Guest guest Posted October 4, 2011 Report Share Posted October 4, 2011 lindsay, was your first surgeon a pediatric neuro? What part of the country do you live in? I met 3 great surgeons in the NY,NJ area and had my surgery done at NYU. I didn't know I had a tethered cord until well after I had both of my children, but I certainly felt much worse for the wear after giving birth. I just chalked it up as being normal, and my doctors didn't think any differently. Looking back, I'm soooo glad I refused the epidural. How long was it after your surgery until you got pregnant? Did you have any problems during your pregnancy or only after?  sue  To: " tetheredspinalcord " <tetheredspinalcord > Sent: Monday, October 3, 2011 9:32 PM Subject: Re: Re: how many times  I am on Opana 20mgs every 12 hours and I am on diludid 4mg every six hours as needed for break thru pain, thy also will give me soma 350mgs because sometimes I get horrible back spasms where I can fall from a standing position to my knees and it takes a few days to recover. I am desperately trying to find a dr who will try surgery again. I was so happy after my first surgery it was amazing! No meds pain free bladder got better and bowel got better too! Then I had a baby and now I'm worse then the frat time. I have a very very high pain tolerance but I do feel the the meds they have me on at the moment atleast let me get out of bed most days, and take care of m daughter the best that I can. The Opana ER is great I feel cause I lasts about 12 hours and I don't have any high feelings from it. Sometimes if I'm out though and can't get to take it right away it can give a runny nose and nasty headache with withdrawal symptoms. But that's it. I'm actually walking really funny lately and have horrible horrible pain from my spine thru my hip down to my knee and rest of my right leg. I've been told by a few people it turns in when I walk. This message was sent from s' iPhone. Apologies if it does not format corectly. > > > What are you taking for the pain? And how is it helping you? Are you waiting for surgery? Or are you trying to find a doctor to do the surgery? > > Michele > > ________________________________ > > To: " tetheredspinalcord " <tetheredspinalcord > > Sent: Monday, October 3, 2011 7:06 PM > Subject: Re: Re: how many times > > > My normal primary dr also is my prescribing dr of my narcotics. I still have to take pee tests and such but she understands how much I'm suffering and is just trying to get me buy till maybe a surgery works to fix it. > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > > > How lucky you are, Michele, that someone is willing to prescribe a narcotic > > med for you. My daughter suffers with weight gain from neurontin (now on > > Lyrica, but don't see how that would be any different) and at age 21 this > > is very hard for her as it is, I would guess, about 40 pounds. She still has > > pain as well though she says that without the meds, she doesn't think she > > would get out of bed in the morning. Please keep us posted regarding > > surgery for you and good wishes for another great success! > > Randee > > > > > > In a message dated 10/1/2011 8:53:42 P.M. Central Daylight Time, > > micheled723@... writes: > > > > Hello > > > > Yes you are right it is difficult to know when to have surgery, I have had > > 2 already, but each time I do I feel great all my symptoms go away > > totally. I can tell that I am at that point of surgery. I do know of a person > > that waited too long and one day went to stand up and fell down and never > > walked again. I don't want that to happen to me. I am a nurse and I try to > > stay active. I am taking oxycontin 2 times a day and that helps me with the > > pain, for me its all the other symptoms that I struggle with. > > The leg weakness and tightness. > > > > I do have a wonderful NS in Denver Colorado and he does these surgeries > > alot.. > > He never suggests waiting if I am having symptoms and since I have had > > such great results from the past surgery. I hope that I make the right choice > > and that this will be the last time. > > > > ________________________________ > > From: " _Randeejae@..._ (mailto:Randeejae@...) " > > <_Randeejae@..._ (mailto:Randeejae@...) > > > To: _tetheredspinalcord _ > > (mailto:tetheredspinalcord ) > > Sent: Saturday, October 1, 2011 5:24 AM > > Subject: Re: Re: how many times > > > > Hi Michele, > > It is a tough call at your age and having already had one surgery when/if > > to do another. I know you are frightened of developing new problems though > > one has to balance that with the fact that surgery can cause problems as > > well...with new scar tissue etc. I think the NSGs turning you down are > > trying to be responsible and know that surgery for pain is usually not > > recommended as the odds are low of it helping. The " weakness " may be what > > they > > told my daughter was " perceived " weakness in that she had normal strength > > in > > her legs but she felt " weak " .. She had three surgeries for those > > issues..our fourth NSG didn't operate until she had had a couple of > > episodes of > > incontinence and difficult issues with constipation along with the > > feelings you > > mentioned. She hasn't had a return of incontinence but the other issues > > remain. I am just grateful she didn't come out worse than she went in as I > > thought this last surgery was not a great idea. > > > > Good luck in making these very very difficult decisions. > > Randee > > > > In a message dated 9/30/2011 10:55:35 P.M. Central Daylight Time, > > _micheled723@..._ (mailto:micheled723@...) writes: > > > > Thank you for responding to me. I must say I am so sorry for what you > > have been through. I can tell when I am tehtered because I get tightness > > in my > > back with pain, leg wekness, I also have heard that if you are having > > symptoms than you should have the surgery to prevent serious issues, loss > > of > > bowel, bladder. I have not experienced that yet. > > > > I am tethered at the sacrum area, which that area usually tends to cause > > kidney stones I have had 4 kidney stone surgeries and I never do get rid > > of > > them. > > > > I give you such respect for dealing with your condition the way you do and > > I only hope that I will be as brave and forgiving if my outcome would be > > as yours. > > > > I would like to know the condition you were in before your first surgery? > > What symptoms did you have and why is your spine tethered. For me I was > > born with spina bifida occulta. > > > > Take care and I hope only good things for you. > > > > ________________________________ > > From: JBobin <__jlbobin@..._ (mailto:_jlbobin@...) _ > > (mailto:_jlbobin@..._ (mailto:jlbobin@...) ) > > > To: __tetheredspinalcord _ > > (mailto:_tetheredspinalcord ) _ > > (mailto:_tetheredspinalcord _ > > (mailto:tetheredspinalcord ) ) > > Sent: Friday, September 30, 2011 1:01 AM > > Subject: Re: Re: how many times > > > > I think the max # of surgeries is really dependent on the person and what > > condition their back is in. For me, it was 3, and the end result of the > > final one was complete paralysis @ T12. While the total number of surgeries > > someone can have is dependent on the person, regardless, the risk of > > complications increases with each subsequent surgery. Only your MD can tell > > you how much he or she feels the risk has increased and then its up to you > > and your MD to decide if the potential benefits are worth the risks. For > > me, > > I knew there was a fairly significant increase in risk (compared to the two > > previous surgeries) with my last one. But I was seriously depressed (even > > suicidal) going into my third surgery. I had lost significant function in a > > very short period of time (a couple months). I could no longer drive. I was > > still walking with bilateral AFOs and forearm crutches, but even that was > > marginal. I was essentially paralyzed below my knees at that point. My legs > > would give out whenever they felt like it sending me crashing to the > > ground. > > I knew, whether I did the surgery or not, I would be in a wheelchair and > > wouldn't be walking for long and felt that whatever the risk, I had to take > > the chance that I could get better. While I didn't improve neurologically > > (and even got worse than when I went into surgery), my life got much > > better. > > Because of the surgical outcome, I got the opportunity to go to the best > > neuro rehab in the SE which changed my life. > > > > Its just something you are going to have to discuss with your MD and then > > decide if that risk is something you can live with. Medicine is more of an > > art than a science and your MD is making an educated guess when it comes to > > risk and %s. I'm always asked - I have no animosity towards my neurosurg. I > > don't think there was any malpractice or did anything wrong. Its just > > something we knew could (but didn't think) would happen. I still think he > > is > > a very talented neurosurgeon and would highly recommend him. He has a > > fabulous bedside manner (hard to find in neurosurgeons). > > > > Its a difficult decision. I've made it 3 times. None of the decisions came > > easily (well, I think the first one came a little too easily, because I > > wasn't educated as I should have been. I knew him to be a highly skilled > > neurosurgeon and took his word as gospel). > > > > Best wishes > > > > Jenn > > > > On Fri, Sep 30, 2011 at 1:29 AM, Michele Casey <__micheled723@..._ > > (mailto:_micheled723@...) _ > > (mailto:_micheled723@..._ (mailto:micheled723@...) ) >wrote: > > > > > ** > > > > > > > > > I have had 2 de-tetherings in 2 years and I believe I need another one. > > > Does anyone know how many times a person can do this? I do know if you > > are > > > having symtoms then the surgery should not be put off due to > > complications > > > that cannot be reversed. I would like to know how many surgeries one can > > > handle? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2011 Report Share Posted October 4, 2011 I hate feeling that I don't want my daughter to get pregnant! That is a horrible thing to say but so many of you became far worse after pregnancy which is certainly an inopportune time to decline!! Randee In a message dated 10/4/2011 6:26:13 A.M. Central Daylight Time, sueradz@... writes: lindsay, was your first surgeon a pediatric neuro? What part of the country do you live in? I met 3 great surgeons in the NY,NJ area and had my surgery done at NYU. I didn't know I had a tethered cord until well after I had both of my children, but I certainly felt much worse for the wear after giving birth. I just chalked it up as being normal, and my doctors didn't think any differently. Looking back, I'm soooo glad I refused the epidural. How long was it after your surgery until you got pregnant? Did you have any problems during your pregnancy or only after? sue From: <_ltbunny192@..._ (mailto:ltbunny192@...) > To: " _tetheredspinalcord _ (mailto:tetheredspinalcord ) " <_tetheredspinalcord _ (mailto:tetheredspinalcord ) > Sent: Monday, October 3, 2011 9:32 PM Subject: Re: Re: how many times I am on Opana 20mgs every 12 hours and I am on diludid 4mg every six hours as needed for break thru pain, thy also will give me soma 350mgs because sometimes I get horrible back spasms where I can fall from a standing position to my knees and it takes a few days to recover. I am desperately trying to find a dr who will try surgery again. I was so happy after my first surgery it was amazing! No meds pain free bladder got better and bowel got better too! Then I had a baby and now I'm worse then the frat time. I have a very very high pain tolerance but I do feel the the meds they have me on at the moment atleast let me get out of bed most days, and take care of m daughter the best that I can. The Opana ER is great I feel cause I lasts about 12 hours and I don't have any high feelings from it. Sometimes if I'm out though and can't get to take it right away it can give a runny nose and nasty headache with withdrawal symptoms. But that's it. I'm actually walking really funny lately and have horrible horrible pain from my spine thru my hip down to my knee and rest of my right leg. I've been told by a few people it turns in when I walk. This message was sent from s' iPhone. Apologies if it does not format corectly. On Oct 3, 2011, at 9:19 PM, Michele Casey <_micheled723@..._ (mailto:micheled723@...) > wrote: > > > What are you taking for the pain? And how is it helping you? Are you waiting for surgery? Or are you trying to find a doctor to do the surgery? > > Michele > > ________________________________ > From: <_ltbunny192@..._ (mailto:ltbunny192@...) > > To: " _tetheredspinalcord _ (mailto:tetheredspinalcord ) " <_tetheredspinalcord _ (mailto:tetheredspinalcord ) > > Sent: Monday, October 3, 2011 7:06 PM > Subject: Re: Re: how many times > > > My normal primary dr also is my prescribing dr of my narcotics. I still have to take pee tests and such but she understands how much I'm suffering and is just trying to get me buy till maybe a surgery works to fix it. > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > On Oct 2, 2011, at 9:23 AM, _Randeejae@..._ (mailto:Randeejae@...) wrote: > > > How lucky you are, Michele, that someone is willing to prescribe a narcotic > > med for you. My daughter suffers with weight gain from neurontin (now on > > Lyrica, but don't see how that would be any different) and at age 21 this > > is very hard for her as it is, I would guess, about 40 pounds. She still has > > pain as well though she says that without the meds, she doesn't think she > > would get out of bed in the morning. Please keep us posted regarding > > surgery for you and good wishes for another great success! > > Randee > > > > > > In a message dated 10/1/2011 8:53:42 P.M. Central Daylight Time, > > _micheled723@..._ (mailto:micheled723@...) writes: > > > > Hello > > > > Yes you are right it is difficult to know when to have surgery, I have had > > 2 already, but each time I do I feel great all my symptoms go away > > totally. I can tell that I am at that point of surgery. I do know of a person > > that waited too long and one day went to stand up and fell down and never > > walked again. I don't want that to happen to me. I am a nurse and I try to > > stay active. I am taking oxycontin 2 times a day and that helps me with the > > pain, for me its all the other symptoms that I struggle with. > > The leg weakness and tightness. > > > > I do have a wonderful NS in Denver Colorado and he does these surgeries > > alot.. > > He never suggests waiting if I am having symptoms and since I have had > > such great results from the past surgery. I hope that I make the right choice > > and that this will be the last time. > > > > ________________________________ > > From: " __Randeejae@..._ (mailto:_Randeejae@...) _ (mailto:_Randeejae@..._ (mailto:Randeejae@...) ) " > > <__Randeejae@..._ (mailto:_Randeejae@...) _ (mailto:_Randeejae@..._ (mailto:Randeejae@...) ) > > > To: __tetheredspinalcord _ (mailto:_tetheredspinalcord ) _ > > (mailto:_tetheredspinalcord _ (mailto:tetheredspinalcord ) ) > > Sent: Saturday, October 1, 2011 5:24 AM > > Subject: Re: Re: how many times > > > > Hi Michele, > > It is a tough call at your age and having already had one surgery when/if > > to do another. I know you are frightened of developing new problems though > > one has to balance that with the fact that surgery can cause problems as > > well...with new scar tissue etc. I think the NSGs turning you down are > > trying to be responsible and know that surgery for pain is usually not > > recommended as the odds are low of it helping. The " weakness " may be what > > they > > told my daughter was " perceived " weakness in that she had normal strength > > in > > her legs but she felt " weak " .. She had three surgeries for those > > issues..our fourth NSG didn't operate until she had had a couple of > > episodes of > > incontinence and difficult issues with constipation along with the > > feelings you > > mentioned. She hasn't had a return of incontinence but the other issues > > remain. I am just grateful she didn't come out worse than she went in as I > > thought this last surgery was not a great idea. > > > > Good luck in making these very very difficult decisions. > > Randee > > > > In a message dated 9/30/2011 10:55:35 P.M. Central Daylight Time, > > __micheled723@..._ (mailto:_micheled723@...) _ (mailto:_micheled723@..._ (mailto:micheled723@...) ) writes: > > > > Thank you for responding to me. I must say I am so sorry for what you > > have been through. I can tell when I am tehtered because I get tightness > > in my > > back with pain, leg wekness, I also have heard that if you are having > > symptoms than you should have the surgery to prevent serious issues, loss > > of > > bowel, bladder. I have not experienced that yet. > > > > I am tethered at the sacrum area, which that area usually tends to cause > > kidney stones I have had 4 kidney stone surgeries and I never do get rid > > of > > them. > > > > I give you such respect for dealing with your condition the way you do and > > I only hope that I will be as brave and forgiving if my outcome would be > > as yours. > > > > I would like to know the condition you were in before your first surgery? > > What symptoms did you have and why is your spine tethered. For me I was > > born with spina bifida occulta. > > > > Take care and I hope only good things for you. > > > > ________________________________ > > From: JBobin <___jlbobin@..._ (mailto:__jlbobin@...) _ (mailto:__jlbobin@..._ (mailto:_jlbobin@...) ) _ > > (mailto:__jlbobin@..._ (mailto:_jlbobin@...) _ (mailto:_jlbobin@..._ (mailto:jlbobin@...) ) ) > > > To: ___tetheredspinalcord _ (mailto:__tetheredspinalcord ) _ > > (mailto:__tetheredspinalcord _ (mailto:_tetheredspinalcord ) ) _ > > (mailto:__tetheredspinalcord _ (mailto:_tetheredspinalcord ) _ > > (mailto:_tetheredspinalcord _ (mailto:tetheredspinalcord ) ) ) > > Sent: Friday, September 30, 2011 1:01 AM > > Subject: Re: Re: how many times > > > > I think the max # of surgeries is really dependent on the person and what > > condition their back is in. For me, it was 3, and the end result of the > > final one was complete paralysis @ T12. While the total number of surgeries > > someone can have is dependent on the person, regardless, the risk of > > complications increases with each subsequent surgery. Only your MD can tell > > you how much he or she feels the risk has increased and then its up to you > > and your MD to decide if the potential benefits are worth the risks. For > > me, > > I knew there was a fairly significant increase in risk (compared to the two > > previous surgeries) with my last one. But I was seriously depressed (even > > suicidal) going into my third surgery. I had lost significant function in a > > very short period of time (a couple months). I could no longer drive. I was > > still walking with bilateral AFOs and forearm crutches, but even that was > > marginal. I was essentially paralyzed below my knees at that point. My legs > > would give out whenever they felt like it sending me crashing to the > > ground. > > I knew, whether I did the surgery or not, I would be in a wheelchair and > > wouldn't be walking for long and felt that whatever the risk, I had to take > > the chance that I could get better. While I didn't improve neurologically > > (and even got worse than when I went into surgery), my life got much > > better. > > Because of the surgical outcome, I got the opportunity to go to the best > > neuro rehab in the SE which changed my life. > > > > Its just something you are going to have to discuss with your MD and then > > decide if that risk is something you can live with. Medicine is more of an > > art than a science and your MD is making an educated guess when it comes to > > risk and %s. I'm always asked - I have no animosity towards my neurosurg. I > > don't think there was any malpractice or did anything wrong. Its just > > something we knew could (but didn't think) would happen. I still think he > > is > > a very talented neurosurgeon and would highly recommend him. He has a > > fabulous bedside manner (hard to find in neurosurgeons). > > > > Its a difficult decision. I've made it 3 times. None of the decisions came > > easily (well, I think the first one came a little too easily, because I > > wasn't educated as I should have been. I knew him to be a highly skilled > > neurosurgeon and took his word as gospel). > > > > Best wishes > > > > Jenn > > > > On Fri, Sep 30, 2011 at 1:29 AM, Michele Casey <___micheled723@..._ (mailto:__micheled723@...) _ > > (mailto:__micheled723@..._ (mailto:_micheled723@...) ) _ > > (mailto:__micheled723@..._ (mailto:_micheled723@...) _ (mailto:_micheled723@..._ (mailto:micheled723@...) ) ) >wrote: > > > > > ** > > > > > > > > > I have had 2 de-tetherings in 2 years and I believe I need another one. > > > Does anyone know how many times a person can do this? I do know if you > > are > > > having symtoms then the surgery should not be put off due to > > complications > > > that cannot be reversed. I would like to know how many surgeries one can > > > handle? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2011 Report Share Posted October 4, 2011 I see that turning in foot on my daughter when she is retethered as well, Lindsey. I don't know if she is at all aware of it..I think not. Randee In a message dated 10/3/2011 8:33:14 P.M. Central Daylight Time, ltbunny192@... writes: I am on Opana 20mgs every 12 hours and I am on diludid 4mg every six hours as needed for break thru pain, thy also will give me soma 350mgs because sometimes I get horrible back spasms where I can fall from a standing position to my knees and it takes a few days to recover. I am desperately trying to find a dr who will try surgery again. I was so happy after my first surgery it was amazing! No meds pain free bladder got better and bowel got better too! Then I had a baby and now I'm worse then the frat time. I have a very very high pain tolerance but I do feel the the meds they have me on at the moment atleast let me get out of bed most days, and take care of m daughter the best that I can. The Opana ER is great I feel cause I lasts about 12 hours and I don't have any high feelings from it. Sometimes if I'm out though and can't get to take it right away it can give a runny nose and nasty headache with withdrawal symptoms. But that's it. I'm actually walking really f unny lately and have horrible horrible pain from my spine thru my hip down to my knee and rest of my right leg. I've been told by a few people it turns in when I walk. This message was sent from s' iPhone. Apologies if it does not format corectly. On Oct 3, 2011, at 9:19 PM, Michele Casey <_micheled723@..._ (mailto:micheled723@...) > wrote: > > > What are you taking for the pain? And how is it helping you? Are you waiting for surgery? Or are you trying to find a doctor to do the surgery? > > Michele > > ________________________________ > From: <_ltbunny192@..._ (mailto:ltbunny192@...) > > To: " _tetheredspinalcord _ (mailto:tetheredspinalcord ) " <_tetheredspinalcord _ (mailto:tetheredspinalcord ) > > Sent: Monday, October 3, 2011 7:06 PM > Subject: Re: Re: how many times > > > My normal primary dr also is my prescribing dr of my narcotics. I still have to take pee tests and such but she understands how much I'm suffering and is just trying to get me buy till maybe a surgery works to fix it. > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > On Oct 2, 2011, at 9:23 AM, _Randeejae@..._ (mailto:Randeejae@...) wrote: > > > How lucky you are, Michele, that someone is willing to prescribe a narcotic > > med for you. My daughter suffers with weight gain from neurontin (now on > > Lyrica, but don't see how that would be any different) and at age 21 this > > is very hard for her as it is, I would guess, about 40 pounds. She still has > > pain as well though she says that without the meds, she doesn't think she > > would get out of bed in the morning. Please keep us posted regarding > > surgery for you and good wishes for another great success! > > Randee > > > > > > In a message dated 10/1/2011 8:53:42 P.M. Central Daylight Time, > > _micheled723@..._ (mailto:micheled723@...) writes: > > > > Hello > > > > Yes you are right it is difficult to know when to have surgery, I have had > > 2 already, but each time I do I feel great all my symptoms go away > > totally. I can tell that I am at that point of surgery. I do know of a person > > that waited too long and one day went to stand up and fell down and never > > walked again. I don't want that to happen to me. I am a nurse and I try to > > stay active. I am taking oxycontin 2 times a day and that helps me with the > > pain, for me its all the other symptoms that I struggle with. > > The leg weakness and tightness. > > > > I do have a wonderful NS in Denver Colorado and he does these surgeries > > alot.. > > He never suggests waiting if I am having symptoms and since I have had > > such great results from the past surgery. I hope that I make the right choice > > and that this will be the last time. > > > > ________________________________ > > From: " __Randeejae@..._ (mailto:_Randeejae@...) _ (mailto:_Randeejae@..._ (mailto:Randeejae@...) ) " > > <__Randeejae@..._ (mailto:_Randeejae@...) _ (mailto:_Randeejae@..._ (mailto:Randeejae@...) ) > > > To: __tetheredspinalcord _ (mailto:_tetheredspinalcord ) _ > > (mailto:_tetheredspinalcord _ (mailto:tetheredspinalcord ) ) > > Sent: Saturday, October 1, 2011 5:24 AM > > Subject: Re: Re: how many times > > > > Hi Michele, > > It is a tough call at your age and having already had one surgery when/if > > to do another. I know you are frightened of developing new problems though > > one has to balance that with the fact that surgery can cause problems as > > well...with new scar tissue etc. I think the NSGs turning you down are > > trying to be responsible and know that surgery for pain is usually not > > recommended as the odds are low of it helping. The " weakness " may be what > > they > > told my daughter was " perceived " weakness in that she had normal strength > > in > > her legs but she felt " weak " .. She had three surgeries for those > > issues..our fourth NSG didn't operate until she had had a couple of > > episodes of > > incontinence and difficult issues with constipation along with the > > feelings you > > mentioned. She hasn't had a return of incontinence but the other issues > > remain. I am just grateful she didn't come out worse than she went in as I > > thought this last surgery was not a great idea. > > > > Good luck in making these very very difficult decisions. > > Randee > > > > In a message dated 9/30/2011 10:55:35 P.M. Central Daylight Time, > > __micheled723@..._ (mailto:_micheled723@...) _ (mailto:_micheled723@..._ (mailto:micheled723@...) ) writes: > > > > Thank you for responding to me. I must say I am so sorry for what you > > have been through. I can tell when I am tehtered because I get tightness > > in my > > back with pain, leg wekness, I also have heard that if you are having > > symptoms than you should have the surgery to prevent serious issues, loss > > of > > bowel, bladder. I have not experienced that yet. > > > > I am tethered at the sacrum area, which that area usually tends to cause > > kidney stones I have had 4 kidney stone surgeries and I never do get rid > > of > > them. > > > > I give you such respect for dealing with your condition the way you do and > > I only hope that I will be as brave and forgiving if my outcome would be > > as yours. > > > > I would like to know the condition you were in before your first surgery? > > What symptoms did you have and why is your spine tethered. For me I was > > born with spina bifida occulta. > > > > Take care and I hope only good things for you. > > > > ________________________________ > > From: JBobin <___jlbobin@..._ (mailto:__jlbobin@...) _ (mailto:__jlbobin@..._ (mailto:_jlbobin@...) ) _ > > (mailto:__jlbobin@..._ (mailto:_jlbobin@...) _ (mailto:_jlbobin@..._ (mailto:jlbobin@...) ) ) > > > To: ___tetheredspinalcord _ (mailto:__tetheredspinalcord ) _ > > (mailto:__tetheredspinalcord _ (mailto:_tetheredspinalcord ) ) _ > > (mailto:__tetheredspinalcord _ (mailto:_tetheredspinalcord ) _ > > (mailto:_tetheredspinalcord _ (mailto:tetheredspinalcord ) ) ) > > Sent: Friday, September 30, 2011 1:01 AM > > Subject: Re: Re: how many times > > > > I think the max # of surgeries is really dependent on the person and what > > condition their back is in. For me, it was 3, and the end result of the > > final one was complete paralysis @ T12. While the total number of surgeries > > someone can have is dependent on the person, regardless, the risk of > > complications increases with each subsequent surgery. Only your MD can tell > > you how much he or she feels the risk has increased and then its up to you > > and your MD to decide if the potential benefits are worth the risks. For > > me, > > I knew there was a fairly significant increase in risk (compared to the two > > previous surgeries) with my last one. But I was seriously depressed (even > > suicidal) going into my third surgery. I had lost significant function in a > > very short period of time (a couple months). I could no longer drive. I was > > still walking with bilateral AFOs and forearm crutches, but even that was > > marginal. I was essentially paralyzed below my knees at that point. My legs > > would give out whenever they felt like it sending me crashing to the > > ground. > > I knew, whether I did the surgery or not, I would be in a wheelchair and > > wouldn't be walking for long and felt that whatever the risk, I had to take > > the chance that I could get better. While I didn't improve neurologically > > (and even got worse than when I went into surgery), my life got much > > better. > > Because of the surgical outcome, I got the opportunity to go to the best > > neuro rehab in the SE which changed my life. > > > > Its just something you are going to have to discuss with your MD and then > > decide if that risk is something you can live with. Medicine is more of an > > art than a science and your MD is making an educated guess when it comes to > > risk and %s. I'm always asked - I have no animosity towards my neurosurg. I > > don't think there was any malpractice or did anything wrong. Its just > > something we knew could (but didn't think) would happen. I still think he > > is > > a very talented neurosurgeon and would highly recommend him. He has a > > fabulous bedside manner (hard to find in neurosurgeons). > > > > Its a difficult decision. I've made it 3 times. None of the decisions came > > easily (well, I think the first one came a little too easily, because I > > wasn't educated as I should have been. I knew him to be a highly skilled > > neurosurgeon and took his word as gospel). > > > > Best wishes > > > > Jenn > > > > On Fri, Sep 30, 2011 at 1:29 AM, Michele Casey <___micheled723@..._ (mailto:__micheled723@...) _ > > (mailto:__micheled723@..._ (mailto:_micheled723@...) ) _ > > (mailto:__micheled723@..._ (mailto:_micheled723@...) _ (mailto:_micheled723@..._ (mailto:micheled723@...) ) ) >wrote: > > > > > ** > > > > > > > > > I have had 2 de-tetherings in 2 years and I believe I need another one. > > > Does anyone know how many times a person can do this? I do know if you > > are > > > having symtoms then the surgery should not be put off due to > > complications > > > that cannot be reversed. I would like to know how many surgeries one can > > > handle? > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2011 Report Share Posted October 5, 2011 Yes my first dr was a pedi dr Feildstein at Columbia presbyterian. I had problems during the pregnancy I did IVF to get pregnant sugary was Jan 08. I got preg aug. And was all down hill after. Thank god I knew about the tsc though cause I did have a csection so atleast I didn't have to worry about those problems because the neuro warned me. This message was sent from s' iPhone. Apologies if it does not format corectly. > lindsay, was your first surgeon a pediatric neuro? What part of the country do you live in? I met 3 great surgeons in the NY,NJ area and had my surgery done at NYU. I didn't know I had a tethered cord until well after I had both of my children, but I certainly felt much worse for the wear after giving birth. I just chalked it up as being normal, and my doctors didn't think any differently. Looking back, I'm soooo glad I refused the epidural. How long was it after your surgery until you got pregnant? Did you have any problems during your pregnancy or only after? > > sue > > > > > To: " tetheredspinalcord " <tetheredspinalcord > > Sent: Monday, October 3, 2011 9:32 PM > Subject: Re: Re: how many times > > > I am on Opana 20mgs every 12 hours and I am on diludid 4mg every six hours as needed for break thru pain, thy also will give me soma 350mgs because sometimes I get horrible back spasms where I can fall from a standing position to my knees and it takes a few days to recover. I am desperately trying to find a dr who will try surgery again. I was so happy after my first surgery it was amazing! No meds pain free bladder got better and bowel got better too! Then I had a baby and now I'm worse then the frat time. I have a very very high pain tolerance but I do feel the the meds they have me on at the moment atleast let me get out of bed most days, and take care of m daughter the best that I can. The Opana ER is great I feel cause I lasts about 12 hours and I don't have any high feelings from it. Sometimes if I'm out though and can't get to take it right away it can give a runny nose and nasty headache with withdrawal symptoms. But that's it. I'm actually > walking really funny lately and have horrible horrible pain from my spine thru my hip down to my knee and rest of my right leg. I've been told by a few people it turns in when I walk. > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > > > > > > > What are you taking for the pain? And how is it helping you? Are you waiting for surgery? Or are you trying to find a doctor to do the surgery? > > > > Michele > > > > ________________________________ > > > > To: " tetheredspinalcord " <tetheredspinalcord > > > Sent: Monday, October 3, 2011 7:06 PM > > Subject: Re: Re: how many times > > > > > > My normal primary dr also is my prescribing dr of my narcotics. I still have to take pee tests and such but she understands how much I'm suffering and is just trying to get me buy till maybe a surgery works to fix it. > > > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > > > > > > > How lucky you are, Michele, that someone is willing to prescribe a narcotic > > > med for you. My daughter suffers with weight gain from neurontin (now on > > > Lyrica, but don't see how that would be any different) and at age 21 this > > > is very hard for her as it is, I would guess, about 40 pounds. She still has > > > pain as well though she says that without the meds, she doesn't think she > > > would get out of bed in the morning. Please keep us posted regarding > > > surgery for you and good wishes for another great success! > > > Randee > > > > > > > > > In a message dated 10/1/2011 8:53:42 P.M. Central Daylight Time, > > > micheled723@... writes: > > > > > > Hello > > > > > > Yes you are right it is difficult to know when to have surgery, I have had > > > 2 already, but each time I do I feel great all my symptoms go away > > > totally. I can tell that I am at that point of surgery. I do know of a person > > > that waited too long and one day went to stand up and fell down and never > > > walked again. I don't want that to happen to me. I am a nurse and I try to > > > stay active. I am taking oxycontin 2 times a day and that helps me with the > > > pain, for me its all the other symptoms that I struggle with. > > > The leg weakness and tightness. > > > > > > I do have a wonderful NS in Denver Colorado and he does these surgeries > > > alot.. > > > He never suggests waiting if I am having symptoms and since I have had > > > such great results from the past surgery. I hope that I make the right choice > > > and that this will be the last time. > > > > > > ________________________________ > > > From: " _Randeejae@..._ (mailto:Randeejae@...) " > > > <_Randeejae@..._ (mailto:Randeejae@...) > > > > To: _tetheredspinalcord _ > > > (mailto:tetheredspinalcord ) > > > Sent: Saturday, October 1, 2011 5:24 AM > > > Subject: Re: Re: how many times > > > > > > Hi Michele, > > > It is a tough call at your age and having already had one surgery when/if > > > to do another. I know you are frightened of developing new problems though > > > one has to balance that with the fact that surgery can cause problems as > > > well...with new scar tissue etc. I think the NSGs turning you down are > > > trying to be responsible and know that surgery for pain is usually not > > > recommended as the odds are low of it helping. The " weakness " may be what > > > they > > > told my daughter was " perceived " weakness in that she had normal strength > > > in > > > her legs but she felt " weak " .. She had three surgeries for those > > > issues..our fourth NSG didn't operate until she had had a couple of > > > episodes of > > > incontinence and difficult issues with constipation along with the > > > feelings you > > > mentioned. She hasn't had a return of incontinence but the other issues > > > remain. I am just grateful she didn't come out worse than she went in as I > > > thought this last surgery was not a great idea. > > > > > > Good luck in making these very very difficult decisions. > > > Randee > > > > > > In a message dated 9/30/2011 10:55:35 P.M. Central Daylight Time, > > > _micheled723@..._ (mailto:micheled723@...) writes: > > > > > > Thank you for responding to me. I must say I am so sorry for what you > > > have been through. I can tell when I am tehtered because I get tightness > > > in my > > > back with pain, leg wekness, I also have heard that if you are having > > > symptoms than you should have the surgery to prevent serious issues, loss > > > of > > > bowel, bladder. I have not experienced that yet. > > > > > > I am tethered at the sacrum area, which that area usually tends to cause > > > kidney stones I have had 4 kidney stone surgeries and I never do get rid > > > of > > > them. > > > > > > I give you such respect for dealing with your condition the way you do and > > > I only hope that I will be as brave and forgiving if my outcome would be > > > as yours. > > > > > > I would like to know the condition you were in before your first surgery? > > > What symptoms did you have and why is your spine tethered. For me I was > > > born with spina bifida occulta. > > > > > > Take care and I hope only good things for you. > > > > > > ________________________________ > > > From: JBobin <__jlbobin@..._ (mailto:_jlbobin@...) _ > > > (mailto:_jlbobin@..._ (mailto:jlbobin@...) ) > > > > To: __tetheredspinalcord _ > > > (mailto:_tetheredspinalcord ) _ > > > (mailto:_tetheredspinalcord _ > > > (mailto:tetheredspinalcord ) ) > > > Sent: Friday, September 30, 2011 1:01 AM > > > Subject: Re: Re: how many times > > > > > > I think the max # of surgeries is really dependent on the person and what > > > condition their back is in. For me, it was 3, and the end result of the > > > final one was complete paralysis @ T12. While the total number of surgeries > > > someone can have is dependent on the person, regardless, the risk of > > > complications increases with each subsequent surgery. Only your MD can tell > > > you how much he or she feels the risk has increased and then its up to you > > > and your MD to decide if the potential benefits are worth the risks. For > > > me, > > > I knew there was a fairly significant increase in risk (compared to the two > > > previous surgeries) with my last one. But I was seriously depressed (even > > > suicidal) going into my third surgery. I had lost significant function in a > > > very short period of time (a couple months). I could no longer drive. I was > > > still walking with bilateral AFOs and forearm crutches, but even that was > > > marginal. I was essentially paralyzed below my knees at that point. My legs > > > would give out whenever they felt like it sending me crashing to the > > > ground. > > > I knew, whether I did the surgery or not, I would be in a wheelchair and > > > wouldn't be walking for long and felt that whatever the risk, I had to take > > > the chance that I could get better. While I didn't improve neurologically > > > (and even got worse than when I went into surgery), my life got much > > > better. > > > Because of the surgical outcome, I got the opportunity to go to the best > > > neuro rehab in the SE which changed my life. > > > > > > Its just something you are going to have to discuss with your MD and then > > > decide if that risk is something you can live with. Medicine is more of an > > > art than a science and your MD is making an educated guess when it comes to > > > risk and %s. I'm always asked - I have no animosity towards my neurosurg. I > > > don't think there was any malpractice or did anything wrong. Its just > > > something we knew could (but didn't think) would happen. I still think he > > > is > > > a very talented neurosurgeon and would highly recommend him. He has a > > > fabulous bedside manner (hard to find in neurosurgeons). > > > > > > Its a difficult decision. I've made it 3 times. None of the decisions came > > > easily (well, I think the first one came a little too easily, because I > > > wasn't educated as I should have been. I knew him to be a highly skilled > > > neurosurgeon and took his word as gospel). > > > > > > Best wishes > > > > > > Jenn > > > > > > On Fri, Sep 30, 2011 at 1:29 AM, Michele Casey <__micheled723@..._ > > > (mailto:_micheled723@...) _ > > > (mailto:_micheled723@..._ (mailto:micheled723@...) ) >wrote: > > > > > > > ** > > > > > > > > > > > > I have had 2 de-tetherings in 2 years and I believe I need another one. > > > > Does anyone know how many times a person can do this? I do know if you > > > are > > > > having symtoms then the surgery should not be put off due to > > > complications > > > > that cannot be reversed. I would like to know how many surgeries one can > > > > handle? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2011 Report Share Posted October 5, 2011 I used a pedi so now because of my age he can't do the surgery. The others I have seen don't feel my symptoms warrant the surgery. I had a MRI a year ago that showed a retether I'm 26 now. I totally agree with the temps and night and day stuff. I tried oxcotin but made me sick to my stomach. This message was sent from s' iPhone. Apologies if it does not format corectly. > Hello > > I have never tried opana, but I do take oxycontin 2 times daily and that helps me, now that the weather is changing I am feeling alittle bit worse in the am and pm when the temp changes. Have you had another MRI? do you know if you are tethered again? Or are you going on how you feel? > > I finally scheduled my MRI for this wk, but I have been tethered 2 times and have had 2 surgeries so I can tell the way my body feels. Like you both times I had surgery I have come home feeling great, night and day results. I am afraid of waiting too long as you know sometimes the symptoms will not go away even after surgery if we wait to long. > > Are you having trouble finding a surgeon who will do the surgery? The surgeon who did your first one does not want to repeat again? Or does he feel it is too risky? Or is he waiting for your symptoms to get worse first? Thats what I don't want to hear----lets wait until it gets worse. As I have said before I know someone who waited too long and when he went to stand up he fell to the floor and never got up again. I will do all I can to prevent that if I can. > > I have had 2 children before I even knew I had a tethered cord, I am so glad you were able to carry a baby, and I am sure it must be hard at times when you are having trouble just getting around yourself. You are very strong and should be very proud of yourself. I am sorry I don't know if I asked you this before or if you mind telling me your age? > > Well until I hear from you take care and my best > Michele > > ________________________________ > > To: " tetheredspinalcord " <tetheredspinalcord > > Sent: Monday, October 3, 2011 7:32 PM > Subject: Re: Re: how many times > > > I am on Opana 20mgs every 12 hours and I am on diludid 4mg every six hours as needed for break thru pain, thy also will give me soma 350mgs because sometimes I get horrible back spasms where I can fall from a standing position to my knees and it takes a few days to recover. I am desperately trying to find a dr who will try surgery again. I was so happy after my first surgery it was amazing! No meds pain free bladder got better and bowel got better too! Then I had a baby and now I'm worse then the frat time. I have a very very high pain tolerance but I do feel the the meds they have me on at the moment atleast let me get out of bed most days, and take care of m daughter the best that I can. The Opana ER is great I feel cause I lasts about 12 hours and I don't have any high feelings from it. Sometimes if I'm out though and can't get to take it right away it can give a runny nose and nasty headache with withdrawal symptoms. But that's it. I'm actually > walking really funny lately and have horrible horrible pain from my spine thru my hip down to my knee and rest of my right leg. I've been told by a few people it turns in when I walk. > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > > > > > > > What are you taking for the pain? And how is it helping you? Are you waiting for surgery? Or are you trying to find a doctor to do the surgery? > > > > Michele > > > > ________________________________ > > > > To: " tetheredspinalcord " <tetheredspinalcord > > > Sent: Monday, October 3, 2011 7:06 PM > > Subject: Re: Re: how many times > > > > > > My normal primary dr also is my prescribing dr of my narcotics. I still have to take pee tests and such but she understands how much I'm suffering and is just trying to get me buy till maybe a surgery works to fix it. > > > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > > > > > > > How lucky you are, Michele, that someone is willing to prescribe a narcotic > > > med for you. My daughter suffers with weight gain from neurontin (now on > > > Lyrica, but don't see how that would be any different) and at age 21 this > > > is very hard for her as it is, I would guess, about 40 pounds. She still has > > > pain as well though she says that without the meds, she doesn't think she > > > would get out of bed in the morning. Please keep us posted regarding > > > surgery for you and good wishes for another great success! > > > Randee > > > > > > > > > In a message dated 10/1/2011 8:53:42 P.M. Central Daylight Time, > > > micheled723@... writes: > > > > > > Hello > > > > > > Yes you are right it is difficult to know when to have surgery, I have had > > > 2 already, but each time I do I feel great all my symptoms go away > > > totally. I can tell that I am at that point of surgery. I do know of a person > > > that waited too long and one day went to stand up and fell down and never > > > walked again. I don't want that to happen to me. I am a nurse and I try to > > > stay active. I am taking oxycontin 2 times a day and that helps me with the > > > pain, for me its all the other symptoms that I struggle with. > > > The leg weakness and tightness. > > > > > > I do have a wonderful NS in Denver Colorado and he does these surgeries > > > alot.. > > > He never suggests waiting if I am having symptoms and since I have had > > > such great results from the past surgery. I hope that I make the right choice > > > and that this will be the last time. > > > > > > ________________________________ > > > From: " _Randeejae@..._ (mailto:Randeejae@...) " > > > <_Randeejae@..._ (mailto:Randeejae@...) > > > > To: _tetheredspinalcord _ > > > (mailto:tetheredspinalcord ) > > > Sent: Saturday, October 1, 2011 5:24 AM > > > Subject: Re: Re: how many times > > > > > > Hi Michele, > > > It is a tough call at your age and having already had one surgery when/if > > > to do another. I know you are frightened of developing new problems though > > > one has to balance that with the fact that surgery can cause problems as > > > well...with new scar tissue etc. I think the NSGs turning you down are > > > trying to be responsible and know that surgery for pain is usually not > > > recommended as the odds are low of it helping. The " weakness " may be what > > > they > > > told my daughter was " perceived " weakness in that she had normal strength > > > in > > > her legs but she felt " weak " .. She had three surgeries for those > > > issues..our fourth NSG didn't operate until she had had a couple of > > > episodes of > > > incontinence and difficult issues with constipation along with the > > > feelings you > > > mentioned. She hasn't had a return of incontinence but the other issues > > > remain. I am just grateful she didn't come out worse than she went in as I > > > thought this last surgery was not a great idea. > > > > > > Good luck in making these very very difficult decisions. > > > Randee > > > > > > In a message dated 9/30/2011 10:55:35 P.M. Central Daylight Time, > > > _micheled723@..._ (mailto:micheled723@...) writes: > > > > > > Thank you for responding to me. I must say I am so sorry for what you > > > have been through. I can tell when I am tehtered because I get tightness > > > in my > > > back with pain, leg wekness, I also have heard that if you are having > > > symptoms than you should have the surgery to prevent serious issues, loss > > > of > > > bowel, bladder. I have not experienced that yet. > > > > > > I am tethered at the sacrum area, which that area usually tends to cause > > > kidney stones I have had 4 kidney stone surgeries and I never do get rid > > > of > > > them. > > > > > > I give you such respect for dealing with your condition the way you do and > > > I only hope that I will be as brave and forgiving if my outcome would be > > > as yours. > > > > > > I would like to know the condition you were in before your first surgery? > > > What symptoms did you have and why is your spine tethered. For me I was > > > born with spina bifida occulta. > > > > > > Take care and I hope only good things for you. > > > > > > ________________________________ > > > From: JBobin <__jlbobin@..._ (mailto:_jlbobin@...) _ > > > (mailto:_jlbobin@..._ (mailto:jlbobin@...) ) > > > > To: __tetheredspinalcord _ > > > (mailto:_tetheredspinalcord ) _ > > > (mailto:_tetheredspinalcord _ > > > (mailto:tetheredspinalcord ) ) > > > Sent: Friday, September 30, 2011 1:01 AM > > > Subject: Re: Re: how many times > > > > > > I think the max # of surgeries is really dependent on the person and what > > > condition their back is in. For me, it was 3, and the end result of the > > > final one was complete paralysis @ T12. While the total number of surgeries > > > someone can have is dependent on the person, regardless, the risk of > > > complications increases with each subsequent surgery. Only your MD can tell > > > you how much he or she feels the risk has increased and then its up to you > > > and your MD to decide if the potential benefits are worth the risks. For > > > me, > > > I knew there was a fairly significant increase in risk (compared to the two > > > previous surgeries) with my last one. But I was seriously depressed (even > > > suicidal) going into my third surgery. I had lost significant function in a > > > very short period of time (a couple months). I could no longer drive. I was > > > still walking with bilateral AFOs and forearm crutches, but even that was > > > marginal. I was essentially paralyzed below my knees at that point. My legs > > > would give out whenever they felt like it sending me crashing to the > > > ground. > > > I knew, whether I did the surgery or not, I would be in a wheelchair and > > > wouldn't be walking for long and felt that whatever the risk, I had to take > > > the chance that I could get better. While I didn't improve neurologically > > > (and even got worse than when I went into surgery), my life got much > > > better. > > > Because of the surgical outcome, I got the opportunity to go to the best > > > neuro rehab in the SE which changed my life. > > > > > > Its just something you are going to have to discuss with your MD and then > > > decide if that risk is something you can live with. Medicine is more of an > > > art than a science and your MD is making an educated guess when it comes to > > > risk and %s. I'm always asked - I have no animosity towards my neurosurg. I > > > don't think there was any malpractice or did anything wrong. Its just > > > something we knew could (but didn't think) would happen. I still think he > > > is > > > a very talented neurosurgeon and would highly recommend him. He has a > > > fabulous bedside manner (hard to find in neurosurgeons). > > > > > > Its a difficult decision. I've made it 3 times. None of the decisions came > > > easily (well, I think the first one came a little too easily, because I > > > wasn't educated as I should have been. I knew him to be a highly skilled > > > neurosurgeon and took his word as gospel). > > > > > > Best wishes > > > > > > Jenn > > > > > > On Fri, Sep 30, 2011 at 1:29 AM, Michele Casey <__micheled723@..._ > > > (mailto:_micheled723@...) _ > > > (mailto:_micheled723@..._ (mailto:micheled723@...) ) >wrote: > > > > > > > ** > > > > > > > > > > > > I have had 2 de-tetherings in 2 years and I believe I need another one. > > > > Does anyone know how many times a person can do this? I do know if you > > > are > > > > having symtoms then the surgery should not be put off due to > > > complications > > > > that cannot be reversed. I would like to know how many surgeries one can > > > > handle? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2011 Report Share Posted October 5, 2011  What symptoms are you having now? Michele ________________________________ To: " tetheredspinalcord " <tetheredspinalcord > Sent: Wednesday, October 5, 2011 12:05 PM Subject: Re: Re: how many times  I used a pedi so now because of my age he can't do the surgery. The others I have seen don't feel my symptoms warrant the surgery. I had a MRI a year ago that showed a retether I'm 26 now. I totally agree with the temps and night and day stuff. I tried oxcotin but made me sick to my stomach. This message was sent from s' iPhone. Apologies if it does not format corectly. > Hello > > I have never tried opana, but I do take oxycontin 2 times daily and that helps me, now that the weather is changing I am feeling alittle bit worse in the am and pm when the temp changes. Have you had another MRI? do you know if you are tethered again? Or are you going on how you feel? > > I finally scheduled my MRI for this wk, but I have been tethered 2 times and have had 2 surgeries so I can tell the way my body feels. Like you both times I had surgery I have come home feeling great, night and day results. I am afraid of waiting too long as you know sometimes the symptoms will not go away even after surgery if we wait to long. > > Are you having trouble finding a surgeon who will do the surgery? The surgeon who did your first one does not want to repeat again? Or does he feel it is too risky? Or is he waiting for your symptoms to get worse first? Thats what I don't want to hear----lets wait until it gets worse. As I have said before I know someone who waited too long and when he went to stand up he fell to the floor and never got up again. I will do all I can to prevent that if I can. > > I have had 2 children before I even knew I had a tethered cord, I am so glad you were able to carry a baby, and I am sure it must be hard at times when you are having trouble just getting around yourself. You are very strong and should be very proud of yourself. I am sorry I don't know if I asked you this before or if you mind telling me your age? > > Well until I hear from you take care and my best > Michele > > ________________________________ > > To: " tetheredspinalcord " <tetheredspinalcord > > Sent: Monday, October 3, 2011 7:32 PM > Subject: Re: Re: how many times > > > I am on Opana 20mgs every 12 hours and I am on diludid 4mg every six hours as needed for break thru pain, thy also will give me soma 350mgs because sometimes I get horrible back spasms where I can fall from a standing position to my knees and it takes a few days to recover. I am desperately trying to find a dr who will try surgery again. I was so happy after my first surgery it was amazing! No meds pain free bladder got better and bowel got better too! Then I had a baby and now I'm worse then the frat time. I have a very very high pain tolerance but I do feel the the meds they have me on at the moment atleast let me get out of bed most days, and take care of m daughter the best that I can. The Opana ER is great I feel cause I lasts about 12 hours and I don't have any high feelings from it. Sometimes if I'm out though and can't get to take it right away it can give a runny nose and nasty headache with withdrawal symptoms. But that's it. I'm actually > walking really funny lately and have horrible horrible pain from my spine thru my hip down to my knee and rest of my right leg. I've been told by a few people it turns in when I walk. > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > > > > > > > What are you taking for the pain? And how is it helping you? Are you waiting for surgery? Or are you trying to find a doctor to do the surgery? > > > > Michele > > > > ________________________________ > > > > To: " tetheredspinalcord " <tetheredspinalcord > > > Sent: Monday, October 3, 2011 7:06 PM > > Subject: Re: Re: how many times > > > > > > My normal primary dr also is my prescribing dr of my narcotics. I still have to take pee tests and such but she understands how much I'm suffering and is just trying to get me buy till maybe a surgery works to fix it. > > > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > > > > > > > How lucky you are, Michele, that someone is willing to prescribe a narcotic > > > med for you. My daughter suffers with weight gain from neurontin (now on > > > Lyrica, but don't see how that would be any different) and at age 21 this > > > is very hard for her as it is, I would guess, about 40 pounds. She still has > > > pain as well though she says that without the meds, she doesn't think she > > > would get out of bed in the morning. Please keep us posted regarding > > > surgery for you and good wishes for another great success! > > > Randee > > > > > > > > > In a message dated 10/1/2011 8:53:42 P.M. Central Daylight Time, > > > micheled723@... writes: > > > > > > Hello > > > > > > Yes you are right it is difficult to know when to have surgery, I have had > > > 2 already, but each time I do I feel great all my symptoms go away > > > totally. I can tell that I am at that point of surgery. I do know of a person > > > that waited too long and one day went to stand up and fell down and never > > > walked again. I don't want that to happen to me. I am a nurse and I try to > > > stay active. I am taking oxycontin 2 times a day and that helps me with the > > > pain, for me its all the other symptoms that I struggle with. > > > The leg weakness and tightness. > > > > > > I do have a wonderful NS in Denver Colorado and he does these surgeries > > > alot.. > > > He never suggests waiting if I am having symptoms and since I have had > > > such great results from the past surgery. I hope that I make the right choice > > > and that this will be the last time. > > > > > > ________________________________ > > > From: " _Randeejae@..._ (mailto:Randeejae@...) " > > > <_Randeejae@..._ (mailto:Randeejae@...) > > > > To: _tetheredspinalcord _ > > > (mailto:tetheredspinalcord ) > > > Sent: Saturday, October 1, 2011 5:24 AM > > > Subject: Re: Re: how many times > > > > > > Hi Michele, > > > It is a tough call at your age and having already had one surgery when/if > > > to do another. I know you are frightened of developing new problems though > > > one has to balance that with the fact that surgery can cause problems as > > > well...with new scar tissue etc. I think the NSGs turning you down are > > > trying to be responsible and know that surgery for pain is usually not > > > recommended as the odds are low of it helping. The " weakness " may be what > > > they > > > told my daughter was " perceived " weakness in that she had normal strength > > > in > > > her legs but she felt " weak " .. She had three surgeries for those > > > issues..our fourth NSG didn't operate until she had had a couple of > > > episodes of > > > incontinence and difficult issues with constipation along with the > > > feelings you > > > mentioned. She hasn't had a return of incontinence but the other issues > > > remain. I am just grateful she didn't come out worse than she went in as I > > > thought this last surgery was not a great idea. > > > > > > Good luck in making these very very difficult decisions. > > > Randee > > > > > > In a message dated 9/30/2011 10:55:35 P.M. Central Daylight Time, > > > _micheled723@..._ (mailto:micheled723@...) writes: > > > > > > Thank you for responding to me. I must say I am so sorry for what you > > > have been through. I can tell when I am tehtered because I get tightness > > > in my > > > back with pain, leg wekness, I also have heard that if you are having > > > symptoms than you should have the surgery to prevent serious issues, loss > > > of > > > bowel, bladder. I have not experienced that yet. > > > > > > I am tethered at the sacrum area, which that area usually tends to cause > > > kidney stones I have had 4 kidney stone surgeries and I never do get rid > > > of > > > them. > > > > > > I give you such respect for dealing with your condition the way you do and > > > I only hope that I will be as brave and forgiving if my outcome would be > > > as yours. > > > > > > I would like to know the condition you were in before your first surgery? > > > What symptoms did you have and why is your spine tethered. For me I was > > > born with spina bifida occulta. > > > > > > Take care and I hope only good things for you. > > > > > > ________________________________ > > > From: JBobin <__jlbobin@..._ (mailto:_jlbobin@...) _ > > > (mailto:_jlbobin@..._ (mailto:jlbobin@...) ) > > > > To: __tetheredspinalcord _ > > > (mailto:_tetheredspinalcord ) _ > > > (mailto:_tetheredspinalcord _ > > > (mailto:tetheredspinalcord ) ) > > > Sent: Friday, September 30, 2011 1:01 AM > > > Subject: Re: Re: how many times > > > > > > I think the max # of surgeries is really dependent on the person and what > > > condition their back is in. For me, it was 3, and the end result of the > > > final one was complete paralysis @ T12. While the total number of surgeries > > > someone can have is dependent on the person, regardless, the risk of > > > complications increases with each subsequent surgery. Only your MD can tell > > > you how much he or she feels the risk has increased and then its up to you > > > and your MD to decide if the potential benefits are worth the risks. For > > > me, > > > I knew there was a fairly significant increase in risk (compared to the two > > > previous surgeries) with my last one. But I was seriously depressed (even > > > suicidal) going into my third surgery. I had lost significant function in a > > > very short period of time (a couple months). I could no longer drive. I was > > > still walking with bilateral AFOs and forearm crutches, but even that was > > > marginal. I was essentially paralyzed below my knees at that point. My legs > > > would give out whenever they felt like it sending me crashing to the > > > ground. > > > I knew, whether I did the surgery or not, I would be in a wheelchair and > > > wouldn't be walking for long and felt that whatever the risk, I had to take > > > the chance that I could get better. While I didn't improve neurologically > > > (and even got worse than when I went into surgery), my life got much > > > better. > > > Because of the surgical outcome, I got the opportunity to go to the best > > > neuro rehab in the SE which changed my life. > > > > > > Its just something you are going to have to discuss with your MD and then > > > decide if that risk is something you can live with. Medicine is more of an > > > art than a science and your MD is making an educated guess when it comes to > > > risk and %s. I'm always asked - I have no animosity towards my neurosurg. I > > > don't think there was any malpractice or did anything wrong. Its just > > > something we knew could (but didn't think) would happen. I still think he > > > is > > > a very talented neurosurgeon and would highly recommend him. He has a > > > fabulous bedside manner (hard to find in neurosurgeons). > > > > > > Its a difficult decision. I've made it 3 times. None of the decisions came > > > easily (well, I think the first one came a little too easily, because I > > > wasn't educated as I should have been. I knew him to be a highly skilled > > > neurosurgeon and took his word as gospel). > > > > > > Best wishes > > > > > > Jenn > > > > > > On Fri, Sep 30, 2011 at 1:29 AM, Michele Casey <__micheled723@..._ > > > (mailto:_micheled723@...) _ > > > (mailto:_micheled723@..._ (mailto:micheled723@...) ) >wrote: > > > > > > > ** > > > > > > > > > > > > I have had 2 de-tetherings in 2 years and I believe I need another one. > > > > Does anyone know how many times a person can do this? I do know if you > > > are > > > > having symtoms then the surgery should not be put off due to > > > complications > > > > that cannot be reversed. I would like to know how many surgeries one can > > > > handle? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011 I saw dr. noel perinn and liked him alot. www.med.nyu.edu/biosketch/perinn1000   I was quite torn between having him do my surgery or the ped neuro. He did an exam and knew right away that I had a problem, did not dismiss my concerns at all.  To: " tetheredspinalcord " <tetheredspinalcord > Sent: Wednesday, October 5, 2011 2:00 PM Subject: Re: Re: how many times  Yes my first dr was a pedi dr Feildstein at Columbia presbyterian. I had problems during the pregnancy I did IVF to get pregnant sugary was Jan 08. I got preg aug. And was all down hill after. Thank god I knew about the tsc though cause I did have a csection so atleast I didn't have to worry about those problems because the neuro warned me. This message was sent from s' iPhone. Apologies if it does not format corectly. > lindsay, was your first surgeon a pediatric neuro? What part of the country do you live in? I met 3 great surgeons in the NY,NJ area and had my surgery in as I > > > thought this last surgery was not a great idea. > > > gmail.com) _ > > > ( Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use .. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011  Please let me know what symptoms you are having? Michele ________________________________ To: " tetheredspinalcord " <tetheredspinalcord > Sent: Wednesday, October 5, 2011 12:05 PM Subject: Re: Re: how many times  I used a pedi so now because of my age he can't do the surgery. The others I have seen don't feel my symptoms warrant the surgery. I had a MRI a year ago that showed a retether I'm 26 now. I totally agree with the temps and night and day stuff. I tried oxcotin but made me sick to my stomach. This message was sent from s' iPhone. Apologies if it does not format corectly. > Hello > > I have never tried opana, but I do take oxycontin 2 times daily and that helps me, now that the weather is changing I am feeling alittle bit worse in the am and pm when the temp changes. Have you had another MRI? do you know if you are tethered again? Or are you going on how you feel? > > I finally scheduled my MRI for this wk, but I have been tethered 2 times and have had 2 surgeries so I can tell the way my body feels. Like you both times I had surgery I have come home feeling great, night and day results. I am afraid of waiting too long as you know sometimes the symptoms will not go away even after surgery if we wait to long. > > Are you having trouble finding a surgeon who will do the surgery? The surgeon who did your first one does not want to repeat again? Or does he feel it is too risky? Or is he waiting for your symptoms to get worse first? Thats what I don't want to hear----lets wait until it gets worse. As I have said before I know someone who waited too long and when he went to stand up he fell to the floor and never got up again. I will do all I can to prevent that if I can. > > I have had 2 children before I even knew I had a tethered cord, I am so glad you were able to carry a baby, and I am sure it must be hard at times when you are having trouble just getting around yourself. You are very strong and should be very proud of yourself. I am sorry I don't know if I asked you this before or if you mind telling me your age? > > Well until I hear from you take care and my best > Michele > > ________________________________ > > To: " tetheredspinalcord " <tetheredspinalcord > > Sent: Monday, October 3, 2011 7:32 PM > Subject: Re: Re: how many times > > > I am on Opana 20mgs every 12 hours and I am on diludid 4mg every six hours as needed for break thru pain, thy also will give me soma 350mgs because sometimes I get horrible back spasms where I can fall from a standing position to my knees and it takes a few days to recover. I am desperately trying to find a dr who will try surgery again. I was so happy after my first surgery it was amazing! No meds pain free bladder got better and bowel got better too! Then I had a baby and now I'm worse then the frat time. I have a very very high pain tolerance but I do feel the the meds they have me on at the moment atleast let me get out of bed most days, and take care of m daughter the best that I can. The Opana ER is great I feel cause I lasts about 12 hours and I don't have any high feelings from it. Sometimes if I'm out though and can't get to take it right away it can give a runny nose and nasty headache with withdrawal symptoms. But that's it. I'm actually > walking really funny lately and have horrible horrible pain from my spine thru my hip down to my knee and rest of my right leg. I've been told by a few people it turns in when I walk. > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > > > > > > > What are you taking for the pain? And how is it helping you? Are you waiting for surgery? Or are you trying to find a doctor to do the surgery? > > > > Michele > > > > ________________________________ > > > > To: " tetheredspinalcord " <tetheredspinalcord > > > Sent: Monday, October 3, 2011 7:06 PM > > Subject: Re: Re: how many times > > > > > > My normal primary dr also is my prescribing dr of my narcotics. I still have to take pee tests and such but she understands how much I'm suffering and is just trying to get me buy till maybe a surgery works to fix it. > > > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > > > > > > > How lucky you are, Michele, that someone is willing to prescribe a narcotic > > > med for you. My daughter suffers with weight gain from neurontin (now on > > > Lyrica, but don't see how that would be any different) and at age 21 this > > > is very hard for her as it is, I would guess, about 40 pounds. She still has > > > pain as well though she says that without the meds, she doesn't think she > > > would get out of bed in the morning. Please keep us posted regarding > > > surgery for you and good wishes for another great success! > > > Randee > > > > > > > > > In a message dated 10/1/2011 8:53:42 P.M. Central Daylight Time, > > > micheled723@... writes: > > > > > > Hello > > > > > > Yes you are right it is difficult to know when to have surgery, I have had > > > 2 already, but each time I do I feel great all my symptoms go away > > > totally. I can tell that I am at that point of surgery. I do know of a person > > > that waited too long and one day went to stand up and fell down and never > > > walked again. I don't want that to happen to me. I am a nurse and I try to > > > stay active. I am taking oxycontin 2 times a day and that helps me with the > > > pain, for me its all the other symptoms that I struggle with. > > > The leg weakness and tightness. > > > > > > I do have a wonderful NS in Denver Colorado and he does these surgeries > > > alot.. > > > He never suggests waiting if I am having symptoms and since I have had > > > such great results from the past surgery. I hope that I make the right choice > > > and that this will be the last time. > > > > > > ________________________________ > > > From: " _Randeejae@..._ (mailto:Randeejae@...) " > > > <_Randeejae@..._ (mailto:Randeejae@...) > > > > To: _tetheredspinalcord _ > > > (mailto:tetheredspinalcord ) > > > Sent: Saturday, October 1, 2011 5:24 AM > > > Subject: Re: Re: how many times > > > > > > Hi Michele, > > > It is a tough call at your age and having already had one surgery when/if > > > to do another. I know you are frightened of developing new problems though > > > one has to balance that with the fact that surgery can cause problems as > > > well...with new scar tissue etc. I think the NSGs turning you down are > > > trying to be responsible and know that surgery for pain is usually not > > > recommended as the odds are low of it helping. The " weakness " may be what > > > they > > > told my daughter was " perceived " weakness in that she had normal strength > > > in > > > her legs but she felt " weak " .. She had three surgeries for those > > > issues..our fourth NSG didn't operate until she had had a couple of > > > episodes of > > > incontinence and difficult issues with constipation along with the > > > feelings you > > > mentioned. She hasn't had a return of incontinence but the other issues > > > remain. I am just grateful she didn't come out worse than she went in as I > > > thought this last surgery was not a great idea. > > > > > > Good luck in making these very very difficult decisions. > > > Randee > > > > > > In a message dated 9/30/2011 10:55:35 P.M. Central Daylight Time, > > > _micheled723@..._ (mailto:micheled723@...) writes: > > > > > > Thank you for responding to me. I must say I am so sorry for what you > > > have been through. I can tell when I am tehtered because I get tightness > > > in my > > > back with pain, leg wekness, I also have heard that if you are having > > > symptoms than you should have the surgery to prevent serious issues, loss > > > of > > > bowel, bladder. I have not experienced that yet. > > > > > > I am tethered at the sacrum area, which that area usually tends to cause > > > kidney stones I have had 4 kidney stone surgeries and I never do get rid > > > of > > > them. > > > > > > I give you such respect for dealing with your condition the way you do and > > > I only hope that I will be as brave and forgiving if my outcome would be > > > as yours. > > > > > > I would like to know the condition you were in before your first surgery? > > > What symptoms did you have and why is your spine tethered. For me I was > > > born with spina bifida occulta. > > > > > > Take care and I hope only good things for you. > > > > > > ________________________________ > > > From: JBobin <__jlbobin@..._ (mailto:_jlbobin@...) _ > > > (mailto:_jlbobin@..._ (mailto:jlbobin@...) ) > > > > To: __tetheredspinalcord _ > > > (mailto:_tetheredspinalcord ) _ > > > (mailto:_tetheredspinalcord _ > > > (mailto:tetheredspinalcord ) ) > > > Sent: Friday, September 30, 2011 1:01 AM > > > Subject: Re: Re: how many times > > > > > > I think the max # of surgeries is really dependent on the person and what > > > condition their back is in. For me, it was 3, and the end result of the > > > final one was complete paralysis @ T12. While the total number of surgeries > > > someone can have is dependent on the person, regardless, the risk of > > > complications increases with each subsequent surgery. Only your MD can tell > > > you how much he or she feels the risk has increased and then its up to you > > > and your MD to decide if the potential benefits are worth the risks. For > > > me, > > > I knew there was a fairly significant increase in risk (compared to the two > > > previous surgeries) with my last one. But I was seriously depressed (even > > > suicidal) going into my third surgery. I had lost significant function in a > > > very short period of time (a couple months). I could no longer drive. I was > > > still walking with bilateral AFOs and forearm crutches, but even that was > > > marginal. I was essentially paralyzed below my knees at that point. My legs > > > would give out whenever they felt like it sending me crashing to the > > > ground. > > > I knew, whether I did the surgery or not, I would be in a wheelchair and > > > wouldn't be walking for long and felt that whatever the risk, I had to take > > > the chance that I could get better. While I didn't improve neurologically > > > (and even got worse than when I went into surgery), my life got much > > > better. > > > Because of the surgical outcome, I got the opportunity to go to the best > > > neuro rehab in the SE which changed my life. > > > > > > Its just something you are going to have to discuss with your MD and then > > > decide if that risk is something you can live with. Medicine is more of an > > > art than a science and your MD is making an educated guess when it comes to > > > risk and %s. I'm always asked - I have no animosity towards my neurosurg. I > > > don't think there was any malpractice or did anything wrong. Its just > > > something we knew could (but didn't think) would happen. I still think he > > > is > > > a very talented neurosurgeon and would highly recommend him. He has a > > > fabulous bedside manner (hard to find in neurosurgeons). > > > > > > Its a difficult decision. I've made it 3 times. None of the decisions came > > > easily (well, I think the first one came a little too easily, because I > > > wasn't educated as I should have been. I knew him to be a highly skilled > > > neurosurgeon and took his word as gospel). > > > > > > Best wishes > > > > > > Jenn > > > > > > On Fri, Sep 30, 2011 at 1:29 AM, Michele Casey <__micheled723@..._ > > > (mailto:_micheled723@...) _ > > > (mailto:_micheled723@..._ (mailto:micheled723@...) ) >wrote: > > > > > > > ** > > > > > > > > > > > > I have had 2 de-tetherings in 2 years and I believe I need another one. > > > > Does anyone know how many times a person can do this? I do know if you > > > are > > > > having symtoms then the surgery should not be put off due to > > > complications > > > > that cannot be reversed. I would like to know how many surgeries one can > > > > handle? > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011 Thank you! I will give his office a call see if they take my insurance or how fast I can get in if they do! This message was sent from s' iPhone. Apologies if it does not format corectly. > I saw dr. noel perinn and liked him alot. www.med.nyu.edu/biosketch/perinn1000 I was quite torn between having him do my surgery or the ped neuro. He did an exam and knew right away that I had a problem, did not dismiss my concerns at all. > > > > > To: " tetheredspinalcord " <tetheredspinalcord > > Sent: Wednesday, October 5, 2011 2:00 PM > Subject: Re: Re: how many times > > > Yes my first dr was a pedi dr Feildstein at Columbia presbyterian. I had problems during the pregnancy I did IVF to get pregnant sugary was Jan 08. I got preg aug. And was all down hill after. Thank god I knew about the tsc though cause I did have a csection so atleast I didn't have to worry about those problems because the neuro warned me. > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > > > lindsay, was your first surgeon a pediatric neuro? What part of the country do you live in? I met 3 great surgeons in the NY,NJ area and had my surgery in as I > > > > thought this last surgery was not a great idea. > > > > > gmail.com) _ > > > > ( > Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use > . > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011 Well besides pain. Horrible constipation which I know the meds are making worse but when I can go it's very difficult to go. My right leg is numb feels like I'm dragging it and turns in. So does my other foot. I can't do much lifting without after a little while needing to lay down or I'll pass out from the pain. Also been have multiply uti and stone problems. And I think the something is getting worse because I'm really starting to look like the hunch back of noter dame. I know bad spelling lol. This message was sent from s' iPhone. Apologies if it does not format corectly. > > > Please let me know what symptoms you are having? > Michele > > ________________________________ > > To: " tetheredspinalcord " <tetheredspinalcord > > Sent: Wednesday, October 5, 2011 12:05 PM > Subject: Re: Re: how many times > > > I used a pedi so now because of my age he can't do the surgery. The others I have seen don't feel my symptoms warrant the surgery. I had a MRI a year ago that showed a retether I'm 26 now. I totally agree with the temps and night and day stuff. I tried oxcotin but made me sick to my stomach. > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > > > Hello > > > > I have never tried opana, but I do take oxycontin 2 times daily and that helps me, now that the weather is changing I am feeling alittle bit worse in the am and pm when the temp changes. Have you had another MRI? do you know if you are tethered again? Or are you going on how you feel? > > > > I finally scheduled my MRI for this wk, but I have been tethered 2 times and have had 2 surgeries so I can tell the way my body feels. Like you both times I had surgery I have come home feeling great, night and day results. I am afraid of waiting too long as you know sometimes the symptoms will not go away even after surgery if we wait to long. > > > > Are you having trouble finding a surgeon who will do the surgery? The surgeon who did your first one does not want to repeat again? Or does he feel it is too risky? Or is he waiting for your symptoms to get worse first? Thats what I don't want to hear----lets wait until it gets worse. As I have said before I know someone who waited too long and when he went to stand up he fell to the floor and never got up again. I will do all I can to prevent that if I can. > > > > I have had 2 children before I even knew I had a tethered cord, I am so glad you were able to carry a baby, and I am sure it must be hard at times when you are having trouble just getting around yourself. You are very strong and should be very proud of yourself. I am sorry I don't know if I asked you this before or if you mind telling me your age? > > > > Well until I hear from you take care and my best > > Michele > > > > ________________________________ > > > > To: " tetheredspinalcord " <tetheredspinalcord > > > Sent: Monday, October 3, 2011 7:32 PM > > Subject: Re: Re: how many times > > > > > > I am on Opana 20mgs every 12 hours and I am on diludid 4mg every six hours as needed for break thru pain, thy also will give me soma 350mgs because sometimes I get horrible back spasms where I can fall from a standing position to my knees and it takes a few days to recover. I am desperately trying to find a dr who will try surgery again. I was so happy after my first surgery it was amazing! No meds pain free bladder got better and bowel got better too! Then I had a baby and now I'm worse then the frat time. I have a very very high pain tolerance but I do feel the the meds they have me on at the moment atleast let me get out of bed most days, and take care of m daughter the best that I can. The Opana ER is great I feel cause I lasts about 12 hours and I don't have any high feelings from it. Sometimes if I'm out though and can't get to take it right away it can give a runny nose and nasty headache with withdrawal symptoms. But that's it. I'm actually > > walking really funny lately and have horrible horrible pain from my spine thru my hip down to my knee and rest of my right leg. I've been told by a few people it turns in when I walk. > > > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > > > > > > > > > > > > > What are you taking for the pain? And how is it helping you? Are you waiting for surgery? Or are you trying to find a doctor to do the surgery? > > > > > > Michele > > > > > > ________________________________ > > > > > > To: " tetheredspinalcord " <tetheredspinalcord > > > > Sent: Monday, October 3, 2011 7:06 PM > > > Subject: Re: Re: how many times > > > > > > > > > My normal primary dr also is my prescribing dr of my narcotics. I still have to take pee tests and such but she understands how much I'm suffering and is just trying to get me buy till maybe a surgery works to fix it. > > > > > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > > > > > > > > > > > How lucky you are, Michele, that someone is willing to prescribe a narcotic > > > > med for you. My daughter suffers with weight gain from neurontin (now on > > > > Lyrica, but don't see how that would be any different) and at age 21 this > > > > is very hard for her as it is, I would guess, about 40 pounds. She still has > > > > pain as well though she says that without the meds, she doesn't think she > > > > would get out of bed in the morning. Please keep us posted regarding > > > > surgery for you and good wishes for another great success! > > > > Randee > > > > > > > > > > > > In a message dated 10/1/2011 8:53:42 P.M. Central Daylight Time, > > > > micheled723@... writes: > > > > > > > > Hello > > > > > > > > Yes you are right it is difficult to know when to have surgery, I have had > > > > 2 already, but each time I do I feel great all my symptoms go away > > > > totally. I can tell that I am at that point of surgery. I do know of a person > > > > that waited too long and one day went to stand up and fell down and never > > > > walked again. I don't want that to happen to me. I am a nurse and I try to > > > > stay active. I am taking oxycontin 2 times a day and that helps me with the > > > > pain, for me its all the other symptoms that I struggle with. > > > > The leg weakness and tightness. > > > > > > > > I do have a wonderful NS in Denver Colorado and he does these surgeries > > > > alot.. > > > > He never suggests waiting if I am having symptoms and since I have had > > > > such great results from the past surgery. I hope that I make the right choice > > > > and that this will be the last time. > > > > > > > > ________________________________ > > > > From: " _Randeejae@..._ (mailto:Randeejae@...) " > > > > <_Randeejae@..._ (mailto:Randeejae@...) > > > > > To: _tetheredspinalcord _ > > > > (mailto:tetheredspinalcord ) > > > > Sent: Saturday, October 1, 2011 5:24 AM > > > > Subject: Re: Re: how many times > > > > > > > > Hi Michele, > > > > It is a tough call at your age and having already had one surgery when/if > > > > to do another. I know you are frightened of developing new problems though > > > > one has to balance that with the fact that surgery can cause problems as > > > > well...with new scar tissue etc. I think the NSGs turning you down are > > > > trying to be responsible and know that surgery for pain is usually not > > > > recommended as the odds are low of it helping. The " weakness " may be what > > > > they > > > > told my daughter was " perceived " weakness in that she had normal strength > > > > in > > > > her legs but she felt " weak " .. She had three surgeries for those > > > > issues..our fourth NSG didn't operate until she had had a couple of > > > > episodes of > > > > incontinence and difficult issues with constipation along with the > > > > feelings you > > > > mentioned. She hasn't had a return of incontinence but the other issues > > > > remain. I am just grateful she didn't come out worse than she went in as I > > > > thought this last surgery was not a great idea. > > > > > > > > Good luck in making these very very difficult decisions. > > > > Randee > > > > > > > > In a message dated 9/30/2011 10:55:35 P.M. Central Daylight Time, > > > > _micheled723@..._ (mailto:micheled723@...) writes: > > > > > > > > Thank you for responding to me. I must say I am so sorry for what you > > > > have been through. I can tell when I am tehtered because I get tightness > > > > in my > > > > back with pain, leg wekness, I also have heard that if you are having > > > > symptoms than you should have the surgery to prevent serious issues, loss > > > > of > > > > bowel, bladder. I have not experienced that yet. > > > > > > > > I am tethered at the sacrum area, which that area usually tends to cause > > > > kidney stones I have had 4 kidney stone surgeries and I never do get rid > > > > of > > > > them. > > > > > > > > I give you such respect for dealing with your condition the way you do and > > > > I only hope that I will be as brave and forgiving if my outcome would be > > > > as yours. > > > > > > > > I would like to know the condition you were in before your first surgery? > > > > What symptoms did you have and why is your spine tethered. For me I was > > > > born with spina bifida occulta. > > > > > > > > Take care and I hope only good things for you. > > > > > > > > ________________________________ > > > > From: JBobin <__jlbobin@..._ (mailto:_jlbobin@...) _ > > > > (mailto:_jlbobin@..._ (mailto:jlbobin@...) ) > > > > > To: __tetheredspinalcord _ > > > > (mailto:_tetheredspinalcord ) _ > > > > (mailto:_tetheredspinalcord _ > > > > (mailto:tetheredspinalcord ) ) > > > > Sent: Friday, September 30, 2011 1:01 AM > > > > Subject: Re: Re: how many times > > > > > > > > I think the max # of surgeries is really dependent on the person and what > > > > condition their back is in. For me, it was 3, and the end result of the > > > > final one was complete paralysis @ T12. While the total number of surgeries > > > > someone can have is dependent on the person, regardless, the risk of > > > > complications increases with each subsequent surgery. Only your MD can tell > > > > you how much he or she feels the risk has increased and then its up to you > > > > and your MD to decide if the potential benefits are worth the risks. For > > > > me, > > > > I knew there was a fairly significant increase in risk (compared to the two > > > > previous surgeries) with my last one. But I was seriously depressed (even > > > > suicidal) going into my third surgery. I had lost significant function in a > > > > very short period of time (a couple months). I could no longer drive. I was > > > > still walking with bilateral AFOs and forearm crutches, but even that was > > > > marginal. I was essentially paralyzed below my knees at that point. My legs > > > > would give out whenever they felt like it sending me crashing to the > > > > ground. > > > > I knew, whether I did the surgery or not, I would be in a wheelchair and > > > > wouldn't be walking for long and felt that whatever the risk, I had to take > > > > the chance that I could get better. While I didn't improve neurologically > > > > (and even got worse than when I went into surgery), my life got much > > > > better. > > > > Because of the surgical outcome, I got the opportunity to go to the best > > > > neuro rehab in the SE which changed my life. > > > > > > > > Its just something you are going to have to discuss with your MD and then > > > > decide if that risk is something you can live with. Medicine is more of an > > > > art than a science and your MD is making an educated guess when it comes to > > > > risk and %s. I'm always asked - I have no animosity towards my neurosurg. I > > > > don't think there was any malpractice or did anything wrong. Its just > > > > something we knew could (but didn't think) would happen. I still think he > > > > is > > > > a very talented neurosurgeon and would highly recommend him. He has a > > > > fabulous bedside manner (hard to find in neurosurgeons). > > > > > > > > Its a difficult decision. I've made it 3 times. None of the decisions came > > > > easily (well, I think the first one came a little too easily, because I > > > > wasn't educated as I should have been. I knew him to be a highly skilled > > > > neurosurgeon and took his word as gospel). > > > > > > > > Best wishes > > > > > > > > Jenn > > > > > > > > On Fri, Sep 30, 2011 at 1:29 AM, Michele Casey <__micheled723@..._ > > > > (mailto:_micheled723@...) _ > > > > (mailto:_micheled723@..._ (mailto:micheled723@...) ) >wrote: > > > > > > > > > ** > > > > > > > > > > > > > > > I have had 2 de-tetherings in 2 years and I believe I need another one. > > > > > Does anyone know how many times a person can do this? I do know if you > > > > are > > > > > having symtoms then the surgery should not be put off due to > > > > complications > > > > > that cannot be reversed. I would like to know how many surgeries one can > > > > > handle? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011 Both Dr. Frim and Dr. Fuchs are pediatric neurosurgeons and will operate on adults. The neurosurg that did my last 2 surgeries was a pediatric MD and did them when I was an adult. His name is Dr. Mapstone. He is now in OK. They will do the surgery @ an adult facility, but the pediatric MD does the surgery. Dr. Mapstone was a MD @ Egleston Children's Hospital @ Emory University, but my surgery was done @ Emory University Hospital. Jenn ~~~Sent from my Samsung Infuse 4G~~~ > I used a pedi so now because of my age he can't do the surgery. The others I have seen don't feel my symptoms warrant the surgery. I had a MRI a year ago that showed a retether I'm 26 now. I totally agree with the temps and night and day stuff. I tried oxcotin but made me sick to my stomach. > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > >> Hello >> >> I have never tried opana, but I do take oxycontin 2 times daily and that helps me, now that the weather is changing I am feeling alittle bit worse in the am and pm when the temp changes. Have you had another MRI? do you know if you are tethered again? Or are you going on how you feel? >> >> I finally scheduled my MRI for this wk, but I have been tethered 2 times and have had 2 surgeries so I can tell the way my body feels. Like you both times I had surgery I have come home feeling great, night and day results. I am afraid of waiting too long as you know sometimes the symptoms will not go away even after surgery if we wait to long. >> >> Are you having trouble finding a surgeon who will do the surgery? The surgeon who did your first one does not want to repeat again? Or does he feel it is too risky? Or is he waiting for your symptoms to get worse first? Thats what I don't want to hear----lets wait until it gets worse. As I have said before I know someone who waited too long and when he went to stand up he fell to the floor and never got up again. I will do all I can to prevent that if I can. >> >> I have had 2 children before I even knew I had a tethered cord, I am so glad you were able to carry a baby, and I am sure it must be hard at times when you are having trouble just getting around yourself. You are very strong and should be very proud of yourself. I am sorry I don't know if I asked you this before or if you mind telling me your age? >> >> Well until I hear from you take care and my best >> Michele >> >> ________________________________ >> >> To: " tetheredspinalcord " < tetheredspinalcord > >> Sent: Monday, October 3, 2011 7:32 PM >> Subject: Re: Re: how many times >> >> >> I am on Opana 20mgs every 12 hours and I am on diludid 4mg every six hours as needed for break thru pain, thy also will give me soma 350mgs because sometimes I get horrible back spasms where I can fall from a standing position to my knees and it takes a few days to recover. I am desperately trying to find a dr who will try surgery again. I was so happy after my first surgery it was amazing! No meds pain free bladder got better and bowel got better too! Then I had a baby and now I'm worse then the frat time. I have a very very high pain tolerance but I do feel the the meds they have me on at the moment atleast let me get out of bed most days, and take care of m daughter the best that I can. The Opana ER is great I feel cause I lasts about 12 hours and I don't have any high feelings from it. Sometimes if I'm out though and can't get to take it right away it can give a runny nose and nasty headache with withdrawal symptoms. But that's it. I'm actually >> walking really funny lately and have horrible horrible pain from my spine thru my hip down to my knee and rest of my right leg. I've been told by a few people it turns in when I walk. >> >> This message was sent from s' iPhone. Apologies if it does not format corectly. >> >> >> >> > >> > >> > What are you taking for the pain? And how is it helping you? Are you waiting for surgery? Or are you trying to find a doctor to do the surgery? >> > >> > Michele >> > >> > ________________________________ >> > >> > To: " tetheredspinalcord " < tetheredspinalcord > >> > Sent: Monday, October 3, 2011 7:06 PM >> > Subject: Re: Re: how many times >> > >> > >> > My normal primary dr also is my prescribing dr of my narcotics. I still have to take pee tests and such but she understands how much I'm suffering and is just trying to get me buy till maybe a surgery works to fix it. >> > >> > This message was sent from s' iPhone. Apologies if it does not format corectly. >> > >> > >> > >> > > How lucky you are, Michele, that someone is willing to prescribe a narcotic >> > > med for you. My daughter suffers with weight gain from neurontin (now on >> > > Lyrica, but don't see how that would be any different) and at age 21 this >> > > is very hard for her as it is, I would guess, about 40 pounds. She still has >> > > pain as well though she says that without the meds, she doesn't think she >> > > would get out of bed in the morning. Please keep us posted regarding >> > > surgery for you and good wishes for another great success! >> > > Randee >> > > >> > > >> > > In a message dated 10/1/2011 8:53:42 P.M. Central Daylight Time, >> > > micheled723@... writes: >> > > >> > > Hello >> > > >> > > Yes you are right it is difficult to know when to have surgery, I have had >> > > 2 already, but each time I do I feel great all my symptoms go away >> > > totally. I can tell that I am at that point of surgery. I do know of a person >> > > that waited too long and one day went to stand up and fell down and never >> > > walked again. I don't want that to happen to me. I am a nurse and I try to >> > > stay active. I am taking oxycontin 2 times a day and that helps me with the >> > > pain, for me its all the other symptoms that I struggle with. >> > > The leg weakness and tightness. >> > > >> > > I do have a wonderful NS in Denver Colorado and he does these surgeries >> > > alot.. >> > > He never suggests waiting if I am having symptoms and since I have had >> > > such great results from the past surgery. I hope that I make the right choice >> > > and that this will be the last time. >> > > >> > > ________________________________ >> > > From: " _Randeejae@..._ (mailto:Randeejae@...) " >> > > <_Randeejae@..._ (mailto:Randeejae@...) > >> > > To: _tetheredspinalcord _ >> > > (mailto:tetheredspinalcord ) >> > > Sent: Saturday, October 1, 2011 5:24 AM >> > > Subject: Re: Re: how many times >> > > >> > > Hi Michele, >> > > It is a tough call at your age and having already had one surgery when/if >> > > to do another. I know you are frightened of developing new problems though >> > > one has to balance that with the fact that surgery can cause problems as >> > > well...with new scar tissue etc. I think the NSGs turning you down are >> > > trying to be responsible and know that surgery for pain is usually not >> > > recommended as the odds are low of it helping. The " weakness " may be what >> > > they >> > > told my daughter was " perceived " weakness in that she had normal strength >> > > in >> > > her legs but she felt " weak " .. She had three surgeries for those >> > > issues..our fourth NSG didn't operate until she had had a couple of >> > > episodes of >> > > incontinence and difficult issues with constipation along with the >> > > feelings you >> > > mentioned. She hasn't had a return of incontinence but the other issues >> > > remain. I am just grateful she didn't come out worse than she went in as I >> > > thought this last surgery was not a great idea. >> > > >> > > Good luck in making these very very difficult decisions. >> > > Randee >> > > >> > > In a message dated 9/30/2011 10:55:35 P.M. Central Daylight Time, >> > > _micheled723@..._ (mailto:micheled723@...) writes: >> > > >> > > Thank you for responding to me. I must say I am so sorry for what you >> > > have been through. I can tell when I am tehtered because I get tightness >> > > in my >> > > back with pain, leg wekness, I also have heard that if you are having >> > > symptoms than you should have the surgery to prevent serious issues, loss >> > > of >> > > bowel, bladder. I have not experienced that yet. >> > > >> > > I am tethered at the sacrum area, which that area usually tends to cause >> > > kidney stones I have had 4 kidney stone surgeries and I never do get rid >> > > of >> > > them. >> > > >> > > I give you such respect for dealing with your condition the way you do and >> > > I only hope that I will be as brave and forgiving if my outcome would be >> > > as yours. >> > > >> > > I would like to know the condition you were in before your first surgery? >> > > What symptoms did you have and why is your spine tethered. For me I was >> > > born with spina bifida occulta. >> > > >> > > Take care and I hope only good things for you. >> > > >> > > ________________________________ >> > > From: JBobin <__jlbobin@..._ (mailto:_jlbobin@...) _ >> > > (mailto:_jlbobin@..._ (mailto:jlbobin@...) ) > >> > > To: __tetheredspinalcord _ >> > > (mailto:_tetheredspinalcord ) _ >> > > (mailto:_tetheredspinalcord _ >> > > (mailto:tetheredspinalcord ) ) >> > > Sent: Friday, September 30, 2011 1:01 AM >> > > Subject: Re: Re: how many times >> > > >> > > I think the max # of surgeries is really dependent on the person and what >> > > condition their back is in. For me, it was 3, and the end result of the >> > > final one was complete paralysis @ T12. While the total number of surgeries >> > > someone can have is dependent on the person, regardless, the risk of >> > > complications increases with each subsequent surgery. Only your MD can tell >> > > you how much he or she feels the risk has increased and then its up to you >> > > and your MD to decide if the potential benefits are worth the risks. For >> > > me, >> > > I knew there was a fairly significant increase in risk (compared to the two >> > > previous surgeries) with my last one. But I was seriously depressed (even >> > > suicidal) going into my third surgery. I had lost significant function in a >> > > very short period of time (a couple months). I could no longer drive. I was >> > > still walking with bilateral AFOs and forearm crutches, but even that was >> > > marginal. I was essentially paralyzed below my knees at that point. My legs >> > > would give out whenever they felt like it sending me crashing to the >> > > ground. >> > > I knew, whether I did the surgery or not, I would be in a wheelchair and >> > > wouldn't be walking for long and felt that whatever the risk, I had to take >> > > the chance that I could get better. While I didn't improve neurologically >> > > (and even got worse than when I went into surgery), my life got much >> > > better. >> > > Because of the surgical outcome, I got the opportunity to go to the best >> > > neuro rehab in the SE which changed my life. >> > > >> > > Its just something you are going to have to discuss with your MD and then >> > > decide if that risk is something you can live with. Medicine is more of an >> > > art than a science and your MD is making an educated guess when it comes to >> > > risk and %s. I'm always asked - I have no animosity towards my neurosurg. I >> > > don't think there was any malpractice or did anything wrong. Its just >> > > something we knew could (but didn't think) would happen. I still think he >> > > is >> > > a very talented neurosurgeon and would highly recommend him. He has a >> > > fabulous bedside manner (hard to find in neurosurgeons). >> > > >> > > Its a difficult decision. I've made it 3 times. None of the decisions came >> > > easily (well, I think the first one came a little too easily, because I >> > > wasn't educated as I should have been. I knew him to be a highly skilled >> > > neurosurgeon and took his word as gospel). >> > > >> > > Best wishes >> > > >> > > Jenn >> > > >> > > On Fri, Sep 30, 2011 at 1:29 AM, Michele Casey <__micheled723@..._ >> > > (mailto:_micheled723@...) _ >> > > (mailto:_micheled723@..._ (mailto:micheled723@...) ) >wrote: >> > > >> > > > ** >> > > > >> > > > >> > > > I have had 2 de-tetherings in 2 years and I believe I need another one. >> > > > Does anyone know how many times a person can do this? I do know if you >> > > are >> > > > having symtoms then the surgery should not be put off due to >> > > complications >> > > > that cannot be reversed. I would like to know how many surgeries one can >> > > > handle? >> > > > >> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011 Linsay  I also have a lot of low back pain, my legs are very weak and they seem to get weaker daily. I also have problems with kidney stones it seems I can never get rid of them. I already have had 4 lithos. When I bend at the waist it seems my legs want to give out on me, and I get floaters in my eyes. I am not woeking since my last surgery,I am a nurse and the sitting to charrt then getting up and bending down just seemed to make my symptoms worse. Not to mention the fatigue. Now that I am home atleast I can go lay down and be still for awhile. I have 2 great kids who help me around the house, I am blessed to have them. The beginning of summer I was able to mow my lawn it wasn't easy, but I did it, now I cannot make it, my legs are too weak. And from what my NS says the symptoms can get worse as fast as over night and I worry once we lose continence even after the surgery that will not correct itself. I don't want to be in a diaper so when the weakness and pain get bad I would rather have the surgery. OH and yes, me too with the constipation. Plus as I said the weather is changing and I hurt worse when its cold.  Michele ________________________________ To: " tetheredspinalcord " <tetheredspinalcord > Sent: Wednesday, October 5, 2011 9:21 PM Subject: Re: Re: how many times  Well besides pain. Horrible constipation which I know the meds are making worse but when I can go it's very difficult to go. My right leg is numb feels like I'm dragging it and turns in. So does my other foot. I can't do much lifting without after a little while needing to lay down or I'll pass out from the pain. Also been have multiply uti and stone problems. And I think the something is getting worse because I'm really starting to look like the hunch back of noter dame. I know bad spelling lol. This message was sent from s' iPhone. Apologies if it does not format corectly. > > > Please let me know what symptoms you are having? > Michele > > ________________________________ > > To: " tetheredspinalcord " <tetheredspinalcord > > Sent: Wednesday, October 5, 2011 12:05 PM > Subject: Re: Re: how many times > > > I used a pedi so now because of my age he can't do the surgery. The others I have seen don't feel my symptoms warrant the surgery. I had a MRI a year ago that showed a retether I'm 26 now. I totally agree with the temps and night and day stuff. I tried oxcotin but made me sick to my stomach. > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > > > Hello > > > > I have never tried opana, but I do take oxycontin 2 times daily and that helps me, now that the weather is changing I am feeling alittle bit worse in the am and pm when the temp changes. Have you had another MRI? do you know if you are tethered again? Or are you going on how you feel? > > > > I finally scheduled my MRI for this wk, but I have been tethered 2 times and have had 2 surgeries so I can tell the way my body feels. Like you both times I had surgery I have come home feeling great, night and day results. I am afraid of waiting too long as you know sometimes the symptoms will not go away even after surgery if we wait to long. > > > > Are you having trouble finding a surgeon who will do the surgery? The surgeon who did your first one does not want to repeat again? Or does he feel it is too risky? Or is he waiting for your symptoms to get worse first? Thats what I don't want to hear----lets wait until it gets worse. As I have said before I know someone who waited too long and when he went to stand up he fell to the floor and never got up again. I will do all I can to prevent that if I can. > > > > I have had 2 children before I even knew I had a tethered cord, I am so glad you were able to carry a baby, and I am sure it must be hard at times when you are having trouble just getting around yourself. You are very strong and should be very proud of yourself. I am sorry I don't know if I asked you this before or if you mind telling me your age? > > > > Well until I hear from you take care and my best > > Michele > > > > ________________________________ > > > > To: " tetheredspinalcord " <tetheredspinalcord > > > Sent: Monday, October 3, 2011 7:32 PM > > Subject: Re: Re: how many times > > > > > > I am on Opana 20mgs every 12 hours and I am on diludid 4mg every six hours as needed for break thru pain, thy also will give me soma 350mgs because sometimes I get horrible back spasms where I can fall from a standing position to my knees and it takes a few days to recover. I am desperately trying to find a dr who will try surgery again. I was so happy after my first surgery it was amazing! No meds pain free bladder got better and bowel got better too! Then I had a baby and now I'm worse then the frat time. I have a very very high pain tolerance but I do feel the the meds they have me on at the moment atleast let me get out of bed most days, and take care of m daughter the best that I can. The Opana ER is great I feel cause I lasts about 12 hours and I don't have any high feelings from it. Sometimes if I'm out though and can't get to take it right away it can give a runny nose and nasty headache with withdrawal symptoms. But that's it. I'm actually > > walking really funny lately and have horrible horrible pain from my spine thru my hip down to my knee and rest of my right leg. I've been told by a few people it turns in when I walk. > > > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > > > > > > > > > > > > > What are you taking for the pain? And how is it helping you? Are you waiting for surgery? Or are you trying to find a doctor to do the surgery? > > > > > > Michele > > > > > > ________________________________ > > > > > > To: " tetheredspinalcord " <tetheredspinalcord > > > > Sent: Monday, October 3, 2011 7:06 PM > > > Subject: Re: Re: how many times > > > > > > > > > My normal primary dr also is my prescribing dr of my narcotics. I still have to take pee tests and such but she understands how much I'm suffering and is just trying to get me buy till maybe a surgery works to fix it. > > > > > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > > > > > > > > > > > How lucky you are, Michele, that someone is willing to prescribe a narcotic > > > > med for you. My daughter suffers with weight gain from neurontin (now on > > > > Lyrica, but don't see how that would be any different) and at age 21 this > > > > is very hard for her as it is, I would guess, about 40 pounds. She still has > > > > pain as well though she says that without the meds, she doesn't think she > > > > would get out of bed in the morning. Please keep us posted regarding > > > > surgery for you and good wishes for another great success! > > > > Randee > > > > > > > > > > > > In a message dated 10/1/2011 8:53:42 P.M. Central Daylight Time, > > > > micheled723@... writes: > > > > > > > > Hello > > > > > > > > Yes you are right it is difficult to know when to have surgery, I have had > > > > 2 already, but each time I do I feel great all my symptoms go away > > > > totally. I can tell that I am at that point of surgery. I do know of a person > > > > that waited too long and one day went to stand up and fell down and never > > > > walked again. I don't want that to happen to me. I am a nurse and I try to > > > > stay active. I am taking oxycontin 2 times a day and that helps me with the > > > > pain, for me its all the other symptoms that I struggle with. > > > > The leg weakness and tightness. > > > > > > > > I do have a wonderful NS in Denver Colorado and he does these surgeries > > > > alot.. > > > > He never suggests waiting if I am having symptoms and since I have had > > > > such great results from the past surgery. I hope that I make the right choice > > > > and that this will be the last time. > > > > > > > > ________________________________ > > > > From: " _Randeejae@..._ (mailto:Randeejae@...) " > > > > <_Randeejae@..._ (mailto:Randeejae@...) > > > > > To: _tetheredspinalcord _ > > > > (mailto:tetheredspinalcord ) > > > > Sent: Saturday, October 1, 2011 5:24 AM > > > > Subject: Re: Re: how many times > > > > > > > > Hi Michele, > > > > It is a tough call at your age and having already had one surgery when/if > > > > to do another. I know you are frightened of developing new problems though > > > > one has to balance that with the fact that surgery can cause problems as > > > > well...with new scar tissue etc. I think the NSGs turning you down are > > > > trying to be responsible and know that surgery for pain is usually not > > > > recommended as the odds are low of it helping. The " weakness " may be what > > > > they > > > > told my daughter was " perceived " weakness in that she had normal strength > > > > in > > > > her legs but she felt " weak " .. She had three surgeries for those > > > > issues..our fourth NSG didn't operate until she had had a couple of > > > > episodes of > > > > incontinence and difficult issues with constipation along with the > > > > feelings you > > > > mentioned. She hasn't had a return of incontinence but the other issues > > > > remain. I am just grateful she didn't come out worse than she went in as I > > > > thought this last surgery was not a great idea. > > > > > > > > Good luck in making these very very difficult decisions. > > > > Randee > > > > > > > > In a message dated 9/30/2011 10:55:35 P.M. Central Daylight Time, > > > > _micheled723@..._ (mailto:micheled723@...) writes: > > > > > > > > Thank you for responding to me. I must say I am so sorry for what you > > > > have been through. I can tell when I am tehtered because I get tightness > > > > in my > > > > back with pain, leg wekness, I also have heard that if you are having > > > > symptoms than you should have the surgery to prevent serious issues, loss > > > > of > > > > bowel, bladder. I have not experienced that yet. > > > > > > > > I am tethered at the sacrum area, which that area usually tends to cause > > > > kidney stones I have had 4 kidney stone surgeries and I never do get rid > > > > of > > > > them. > > > > > > > > I give you such respect for dealing with your condition the way you do and > > > > I only hope that I will be as brave and forgiving if my outcome would be > > > > as yours. > > > > > > > > I would like to know the condition you were in before your first surgery? > > > > What symptoms did you have and why is your spine tethered. For me I was > > > > born with spina bifida occulta. > > > > > > > > Take care and I hope only good things for you. > > > > > > > > ________________________________ > > > > From: JBobin <__jlbobin@..._ (mailto:_jlbobin@...) _ > > > > (mailto:_jlbobin@..._ (mailto:jlbobin@...) ) > > > > > To: __tetheredspinalcord _ > > > > (mailto:_tetheredspinalcord ) _ > > > > (mailto:_tetheredspinalcord _ > > > > (mailto:tetheredspinalcord ) ) > > > > Sent: Friday, September 30, 2011 1:01 AM > > > > Subject: Re: Re: how many times > > > > > > > > I think the max # of surgeries is really dependent on the person and what > > > > condition their back is in. For me, it was 3, and the end result of the > > > > final one was complete paralysis @ T12. While the total number of surgeries > > > > someone can have is dependent on the person, regardless, the risk of > > > > complications increases with each subsequent surgery. Only your MD can tell > > > > you how much he or she feels the risk has increased and then its up to you > > > > and your MD to decide if the potential benefits are worth the risks. For > > > > me, > > > > I knew there was a fairly significant increase in risk (compared to the two > > > > previous surgeries) with my last one. But I was seriously depressed (even > > > > suicidal) going into my third surgery. I had lost significant function in a > > > > very short period of time (a couple months). I could no longer drive. I was > > > > still walking with bilateral AFOs and forearm crutches, but even that was > > > > marginal. I was essentially paralyzed below my knees at that point. My legs > > > > would give out whenever they felt like it sending me crashing to the > > > > ground. > > > > I knew, whether I did the surgery or not, I would be in a wheelchair and > > > > wouldn't be walking for long and felt that whatever the risk, I had to take > > > > the chance that I could get better. While I didn't improve neurologically > > > > (and even got worse than when I went into surgery), my life got much > > > > better. > > > > Because of the surgical outcome, I got the opportunity to go to the best > > > > neuro rehab in the SE which changed my life. > > > > > > > > Its just something you are going to have to discuss with your MD and then > > > > decide if that risk is something you can live with. Medicine is more of an > > > > art than a science and your MD is making an educated guess when it comes to > > > > risk and %s. I'm always asked - I have no animosity towards my neurosurg. I > > > > don't think there was any malpractice or did anything wrong. Its just > > > > something we knew could (but didn't think) would happen. I still think he > > > > is > > > > a very talented neurosurgeon and would highly recommend him. He has a > > > > fabulous bedside manner (hard to find in neurosurgeons). > > > > > > > > Its a difficult decision. I've made it 3 times. None of the decisions came > > > > easily (well, I think the first one came a little too easily, because I > > > > wasn't educated as I should have been. I knew him to be a highly skilled > > > > neurosurgeon and took his word as gospel). > > > > > > > > Best wishes > > > > > > > > Jenn > > > > > > > > On Fri, Sep 30, 2011 at 1:29 AM, Michele Casey <__micheled723@..._ > > > > (mailto:_micheled723@...) _ > > > > (mailto:_micheled723@..._ (mailto:micheled723@...) ) >wrote: > > > > > > > > > ** > > > > > > > > > > > > > > > I have had 2 de-tetherings in 2 years and I believe I need another one. > > > > > Does anyone know how many times a person can do this? I do know if you > > > > are > > > > > having symtoms then the surgery should not be put off due to > > > > complications > > > > > that cannot be reversed. I would like to know how many surgeries one can > > > > > handle? > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011 Michele Even if u lose continence, u wouldn't b in a diaper. U would b cathing and doing a bowel program. No diapers. I think that is a huge misconception about neurogenic bowel & bladder and incontinence associated with them. In fact, diapers are one of the worst things someone with incontinence and altered sensation can do. It is just a recipe for skin breakdown that gets infected and doesn't heal. So put diaper-wearing-nursing home patient-sitting in the hallway in a Wheelchair image outta ur mind. I think a lot a ppl have it and its simply not the case. I promise, its not as bad as one would imagine. Personally I would rather Cath... at least until I'm able to squat over a public john :-) lord knows I have a BM mote frequently with my program than before I was even DC and dealt with constipation. Jenn PS sorry I can't edit the message I'm responding to. My phone wont let me .... r maybe I just can't figure it out. I could on my iPhone, but can't seem to on my Droid. ~~~Sent from my Samsung Infuse 4G~~~ > Linsay > > I also have a lot of low back pain, my legs are very weak and they seem to get weaker daily. I also have problems with kidney stones it seems I can never get rid of them. I already have had 4 lithos. When I bend at the waist it seems my legs want to give out on me, and I get floaters in my eyes. I am not woeking since my last surgery,I am a nurse and the sitting to charrt then getting up and bending down just seemed to make my symptoms worse. Not to mention the fatigue. Now that I am home atleast I can go lay down and be still for awhile. I have 2 great kids who help me around the house, I am blessed to have them. The beginning of summer I was able to mow my lawn it wasn't easy, but I did it, now I cannot make it, my legs are too weak. And from what my NS says the symptoms can get worse as fast as over night and I worry once we lose continence even after the surgery that will not correct itself. I don't want to be in a diaper so when > the weakness and pain get bad I would rather have the surgery. OH and yes, me too with the constipation. Plus as I said the weather is changing and I hurt worse when its cold. > > Michele > > > ________________________________ > > To: " tetheredspinalcord " < tetheredspinalcord > > Sent: Wednesday, October 5, 2011 9:21 PM > Subject: Re: Re: how many times > > > > Well besides pain. Horrible constipation which I know the meds are making worse but when I can go it's very difficult to go. My right leg is numb feels like I'm dragging it and turns in. So does my other foot. I can't do much lifting without after a little while needing to lay down or I'll pass out from the pain. Also been have multiply uti and stone problems. And I think the something is getting worse because I'm really starting to look like the hunch back of noter dame. I know bad spelling lol. > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > >> >> >> Please let me know what symptoms you are having? >> Michele >> >> ________________________________ >> >> To: " tetheredspinalcord " < tetheredspinalcord > >> Sent: Wednesday, October 5, 2011 12:05 PM >> Subject: Re: Re: how many times >> >> >> I used a pedi so now because of my age he can't do the surgery. The others I have seen don't feel my symptoms warrant the surgery. I had a MRI a year ago that showed a retether I'm 26 now. I totally agree with the temps and night and day stuff. I tried oxcotin but made me sick to my stomach. >> >> This message was sent from s' iPhone. Apologies if it does not format corectly. >> >> >> >> > Hello >> > >> > I have never tried opana, but I do take oxycontin 2 times daily and that helps me, now that the weather is changing I am feeling alittle bit worse in the am and pm when the temp changes. Have you had another MRI? do you know if you are tethered again? Or are you going on how you feel? >> > >> > I finally scheduled my MRI for this wk, but I have been tethered 2 times and have had 2 surgeries so I can tell the way my body feels. Like you both times I had surgery I have come home feeling great, night and day results. I am afraid of waiting too long as you know sometimes the symptoms will not go away even after surgery if we wait to long. >> > >> > Are you having trouble finding a surgeon who will do the surgery? The surgeon who did your first one does not want to repeat again? Or does he feel it is too risky? Or is he waiting for your symptoms to get worse first? Thats what I don't want to hear----lets wait until it gets worse. As I have said before I know someone who waited too long and when he went to stand up he fell to the floor and never got up again. I will do all I can to prevent that if I can. >> > >> > I have had 2 children before I even knew I had a tethered cord, I am so glad you were able to carry a baby, and I am sure it must be hard at times when you are having trouble just getting around yourself. You are very strong and should be very proud of yourself. I am sorry I don't know if I asked you this before or if you mind telling me your age? >> > >> > Well until I hear from you take care and my best >> > Michele >> > >> > ________________________________ >> > >> > To: " tetheredspinalcord " < tetheredspinalcord > >> > Sent: Monday, October 3, 2011 7:32 PM >> > Subject: Re: Re: how many times >> > >> > >> > I am on Opana 20mgs every 12 hours and I am on diludid 4mg every six hours as needed for break thru pain, thy also will give me soma 350mgs because sometimes I get horrible back spasms where I can fall from a standing position to my knees and it takes a few days to recover. I am desperately trying to find a dr who will try surgery again. I was so happy after my first surgery it was amazing! No meds pain free bladder got better and bowel got better too! Then I had a baby and now I'm worse then the frat time. I have a very very high pain tolerance but I do feel the the meds they have me on at the moment atleast let me get out of bed most days, and take care of m daughter the best that I can. The Opana ER is great I feel cause I lasts about 12 hours and I don't have any high feelings from it. Sometimes if I'm out though and can't get to take it right away it can give a runny nose and nasty headache with withdrawal symptoms. But that's it. I'm actually >> > walking really funny lately and have horrible horrible pain from my spine thru my hip down to my knee and rest of my right leg. I've been told by a few people it turns in when I walk. >> > >> > This message was sent from s' iPhone. Apologies if it does not format corectly. >> > >> > On Oct 3, 2011, at 9:19 PM, Michele Casey wrote: >> > >> > > >> > > >> > > What are you taking for the pain? And how is it helping you? Are you waiting for surgery? Or are you trying to find a doctor to do the surgery? >> > > >> > > Michele >> > > >> > > ________________________________ >> > > >> > > To: " tetheredspinalcord " < tetheredspinalcord > >> > > Sent: Monday, October 3, 2011 7:06 PM >> > > Subject: Re: Re: how many times >> > > >> > > >> > > My normal primary dr also is my prescribing dr of my narcotics. I still have to take pee tests and such but she understands how much I'm suffering and is just trying to get me buy till maybe a surgery works to fix it. >> > > >> > > This message was sent from s' iPhone. Apologies if it does not format corectly. >> > > >> > > >> > > >> > > > How lucky you are, Michele, that someone is willing to prescribe a narcotic >> > > > med for you. My daughter suffers with weight gain from neurontin (now on >> > > > Lyrica, but don't see how that would be any different) and at age 21 this >> > > > is very hard for her as it is, I would guess, about 40 pounds. She still has >> > > > pain as well though she says that without the meds, she doesn't think she >> > > > would get out of bed in the morning. Please keep us posted regarding >> > > > surgery for you and good wishes for another great success! >> > > > Randee >> > > > >> > > > >> > > > In a message dated 10/1/2011 8:53:42 P.M. Central Daylight Time, >> > > > micheled723@... writes: >> > > > >> > > > Hello >> > > > >> > > > Yes you are right it is difficult to know when to have surgery, I have had >> > > > 2 already, but each time I do I feel great all my symptoms go away >> > > > totally. I can tell that I am at that point of surgery. I do know of a person >> > > > that waited too long and one day went to stand up and fell down and never >> > > > walked again. I don't want that to happen to me. I am a nurse and I try to >> > > > stay active. I am taking oxycontin 2 times a day and that helps me with the >> > > > pain, for me its all the other symptoms that I struggle with. >> > > > The leg weakness and tightness. >> > > > >> > > > I do have a wonderful NS in Denver Colorado and he does these surgeries >> > > > alot.. >> > > > He never suggests waiting if I am having symptoms and since I have had >> > > > such great results from the past surgery. I hope that I make the right choice >> > > > and that this will be the last time. >> > > > >> > > > ________________________________ >> > > > From: " _Randeejae@..._ (mailto:Randeejae@...) " >> > > > <_Randeejae@..._ (mailto:Randeejae@...) > >> > > > To: _tetheredspinalcord _ >> > > > (mailto:tetheredspinalcord ) >> > > > Sent: Saturday, October 1, 2011 5:24 AM >> > > > Subject: Re: Re: how many times >> > > > >> > > > Hi Michele, >> > > > It is a tough call at your age and having already had one surgery when/if >> > > > to do another. I know you are frightened of developing new problems though >> > > > one has to balance that with the fact that surgery can cause problems as >> > > > well...with new scar tissue etc. I think the NSGs turning you down are >> > > > trying to be responsible and know that surgery for pain is usually not >> > > > recommended as the odds are low of it helping. The " weakness " may be what >> > > > they >> > > > told my daughter was " perceived " weakness in that she had normal strength >> > > > in >> > > > her legs but she felt " weak " .. She had three surgeries for those >> > > > issues..our fourth NSG didn't operate until she had had a couple of >> > > > episodes of >> > > > incontinence and difficult issues with constipation along with the >> > > > feelings you >> > > > mentioned. She hasn't had a return of incontinence but the other issues >> > > > remain. I am just grateful she didn't come out worse than she went in as I >> > > > thought this last surgery was not a great idea. >> > > > >> > > > Good luck in making these very very difficult decisions. >> > > > Randee >> > > > >> > > > In a message dated 9/30/2011 10:55:35 P.M. Central Daylight Time, >> > > > _micheled723@..._ (mailto:micheled723@...) writes: >> > > > >> > > > Thank you for responding to me. I must say I am so sorry for what you >> > > > have been through. I can tell when I am tehtered because I get tightness >> > > > in my >> > > > back with pain, leg wekness, I also have heard that if you are having >> > > > symptoms than you should have the surgery to prevent serious issues, loss >> > > > of >> > > > bowel, bladder. I have not experienced that yet. >> > > > >> > > > I am tethered at the sacrum area, which that area usually tends to cause >> > > > kidney stones I have had 4 kidney stone surgeries and I never do get rid >> > > > of >> > > > them. >> > > > >> > > > I give you such respect for dealing with your condition the way you do and >> > > > I only hope that I will be as brave and forgiving if my outcome would be >> > > > as yours. >> > > > >> > > > I would like to know the condition you were in before your first surgery? >> > > > What symptoms did you have and why is your spine tethered. For me I was >> > > > born with spina bifida occulta. >> > > > >> > > > Take care and I hope only good things for you. >> > > > >> > > > ________________________________ >> > > > From: JBobin <__jlbobin@..._ (mailto:_jlbobin@...) _ >> > > > (mailto:_jlbobin@..._ (mailto:jlbobin@...) ) > >> > > > To: __tetheredspinalcord _ >> > > > (mailto:_tetheredspinalcord ) _ >> > > > (mailto:_tetheredspinalcord _ >> > > > (mailto:tetheredspinalcord ) ) >> > > > Sent: Friday, September 30, 2011 1:01 AM >> > > > Subject: Re: Re: how many times >> > > > >> > > > I think the max # of surgeries is really dependent on the person and what >> > > > condition their back is in. For me, it was 3, and the end result of the >> > > > final one was complete paralysis @ T12. While the total number of surgeries >> > > > someone can have is dependent on the person, regardless, the risk of >> > > > complications increases with each subsequent surgery. Only your MD can tell >> > > > you how much he or she feels the risk has increased and then its up to you >> > > > and your MD to decide if the potential benefits are worth the risks. For >> > > > me, >> > > > I knew there was a fairly significant increase in risk (compared to the two >> > > > previous surgeries) with my last one. But I was seriously depressed (even >> > > > suicidal) going into my third surgery. I had lost significant function in a >> > > > very short period of time (a couple months). I could no longer drive. I was >> > > > still walking with bilateral AFOs and forearm crutches, but even that was >> > > > marginal. I was essentially paralyzed below my knees at that point. My legs >> > > > would give out whenever they felt like it sending me crashing to the >> > > > ground. >> > > > I knew, whether I did the surgery or not, I would be in a wheelchair and >> > > > wouldn't be walking for long and felt that whatever the risk, I had to take >> > > > the chance that I could get better. While I didn't improve neurologically >> > > > (and even got worse than when I went into surgery), my life got much >> > > > better. >> > > > Because of the surgical outcome, I got the opportunity to go to the best >> > > > neuro rehab in the SE which changed my life. >> > > > >> > > > Its just something you are going to have to discuss with your MD and then >> > > > decide if that risk is something you can live with. Medicine is more of an >> > > > art than a science and your MD is making an educated guess when it comes to >> > > > risk and %s. I'm always asked - I have no animosity towards my neurosurg. I >> > > > don't think there was any malpractice or did anything wrong. Its just >> > > > something we knew could (but didn't think) would happen. I still think he >> > > > is >> > > > a very talented neurosurgeon and would highly recommend him. He has a >> > > > fabulous bedside manner (hard to find in neurosurgeons). >> > > > >> > > > Its a difficult decision. I've made it 3 times. None of the decisions came >> > > > easily (well, I think the first one came a little too easily, because I >> > > > wasn't educated as I should have been. I knew him to be a highly skilled >> > > > neurosurgeon and took his word as gospel). >> > > > >> > > > Best wishes >> > > > >> > > > Jenn >> > > > >> > > > On Fri, Sep 30, 2011 at 1:29 AM, Michele Casey <__micheled723@..._ >> > > > (mailto:_micheled723@...) _ >> > > > (mailto:_micheled723@..._ (mailto:micheled723@...) ) >wrote: >> > > > >> > > > > ** >> > > > > >> > > > > >> > > > > I have had 2 de-tetherings in 2 years and I believe I need another one. >> > > > > Does anyone know how many times a person can do this? I do know if you >> > > > are >> > > > > having symtoms then the surgery should not be put off due to >> > > > complications >> > > > > that cannot be reversed. I would like to know how many surgeries one can >> > > > > handle? >> > > > > >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011 Jenn  I do understand the misconception of diapers, I do say it lightly. But I do know that with a tethered cord the chance of losing bowel and bladder control can happen and then it does not come back. I actually have bladder retention, but I don't want to wait to long to have surgery and have to cath myself, my surgeon says that if you wait too long there is no going back the damage has been done. I am a nurse and I know it is not a big deal to cath yourself, but if I can prevent it I will. I of course will do what my surgeon advises, he had done my surgeries, I have had 2 now, so I trust my surgeon very much. Also once you lose that control over you bladder cathing will not fix the problem to make it possible to someday go back to using the bathroom as you once did before, and cathing also can cause infection, plus you always have leakage. Michele ________________________________ To: tetheredspinalcord Sent: Thursday, October 6, 2011 9:25 AM Subject: Re: Re: how many times  Michele Even if u lose continence, u wouldn't b in a diaper. U would b cathing and doing a bowel program. No diapers. I think that is a huge misconception about neurogenic bowel & bladder and incontinence associated with them. In fact, diapers are one of the worst things someone with incontinence and altered sensation can do. It is just a recipe for skin breakdown that gets infected and doesn't heal. So put diaper-wearing-nursing home patient-sitting in the hallway in a Wheelchair image outta ur mind. I think a lot a ppl have it and its simply not the case. I promise, its not as bad as one would imagine. Personally I would rather Cath... at least until I'm able to squat over a public john :-) lord knows I have a BM mote frequently with my program than before I was even DC and dealt with constipation. Jenn PS sorry I can't edit the message I'm responding to. My phone wont let me .... r maybe I just can't figure it out. I could on my iPhone, but can't seem to on my Droid. ~~~Sent from my Samsung Infuse 4G~~~ > Linsay > > I also have a lot of low back pain, my legs are very weak and they seem to get weaker daily. I also have problems with kidney stones it seems I can never get rid of them. I already have had 4 lithos. When I bend at the waist it seems my legs want to give out on me, and I get floaters in my eyes. I am not woeking since my last surgery,I am a nurse and the sitting to charrt then getting up and bending down just seemed to make my symptoms worse. Not to mention the fatigue. Now that I am home atleast I can go lay down and be still for awhile. I have 2 great kids who help me around the house, I am blessed to have them. The beginning of summer I was able to mow my lawn it wasn't easy, but I did it, now I cannot make it, my legs are too weak. And from what my NS says the symptoms can get worse as fast as over night and I worry once we lose continence even after the surgery that will not correct itself. I don't want to be in a diaper so when > the weakness and pain get bad I would rather have the surgery. OH and yes, me too with the constipation. Plus as I said the weather is changing and I hurt worse when its cold. > > Michele > > > ________________________________ > > To: " tetheredspinalcord " < tetheredspinalcord > > Sent: Wednesday, October 5, 2011 9:21 PM > Subject: Re: Re: how many times > > > > Well besides pain. Horrible constipation which I know the meds are making worse but when I can go it's very difficult to go. My right leg is numb feels like I'm dragging it and turns in. So does my other foot. I can't do much lifting without after a little while needing to lay down or I'll pass out from the pain. Also been have multiply uti and stone problems. And I think the something is getting worse because I'm really starting to look like the hunch back of noter dame. I know bad spelling lol. > > This message was sent from s' iPhone. Apologies if it does not format corectly. > > > >> >> >> Please let me know what symptoms you are having? >> Michele >> >> ________________________________ >> >> To: " tetheredspinalcord " < tetheredspinalcord > >> Sent: Wednesday, October 5, 2011 12:05 PM >> Subject: Re: Re: how many times >> >> >> I used a pedi so now because of my age he can't do the surgery. The others I have seen don't feel my symptoms warrant the surgery. I had a MRI a year ago that showed a retether I'm 26 now. I totally agree with the temps and night and day stuff. I tried oxcotin but made me sick to my stomach. >> >> This message was sent from s' iPhone. Apologies if it does not format corectly. >> >> >> >> > Hello >> > >> > I have never tried opana, but I do take oxycontin 2 times daily and that helps me, now that the weather is changing I am feeling alittle bit worse in the am and pm when the temp changes. Have you had another MRI? do you know if you are tethered again? Or are you going on how you feel? >> > >> > I finally scheduled my MRI for this wk, but I have been tethered 2 times and have had 2 surgeries so I can tell the way my body feels. Like you both times I had surgery I have come home feeling great, night and day results. I am afraid of waiting too long as you know sometimes the symptoms will not go away even after surgery if we wait to long. >> > >> > Are you having trouble finding a surgeon who will do the surgery? The surgeon who did your first one does not want to repeat again? Or does he feel it is too risky? Or is he waiting for your symptoms to get worse first? Thats what I don't want to hear----lets wait until it gets worse. As I have said before I know someone who waited too long and when he went to stand up he fell to the floor and never got up again. I will do all I can to prevent that if I can. >> > >> > I have had 2 children before I even knew I had a tethered cord, I am so glad you were able to carry a baby, and I am sure it must be hard at times when you are having trouble just getting around yourself. You are very strong and should be very proud of yourself. I am sorry I don't know if I asked you this before or if you mind telling me your age? >> > >> > Well until I hear from you take care and my best >> > Michele >> > >> > ________________________________ >> > >> > To: " tetheredspinalcord " < tetheredspinalcord > >> > Sent: Monday, October 3, 2011 7:32 PM >> > Subject: Re: Re: how many times >> > >> > >> > I am on Opana 20mgs every 12 hours and I am on diludid 4mg every six hours as needed for break thru pain, thy also will give me soma 350mgs because sometimes I get horrible back spasms where I can fall from a standing position to my knees and it takes a few days to recover. I am desperately trying to find a dr who will try surgery again. I was so happy after my first surgery it was amazing! No meds pain free bladder got better and bowel got better too! Then I had a baby and now I'm worse then the frat time. I have a very very high pain tolerance but I do feel the the meds they have me on at the moment atleast let me get out of bed most days, and take care of m daughter the best that I can. The Opana ER is great I feel cause I lasts about 12 hours and I don't have any high feelings from it. Sometimes if I'm out though and can't get to take it right away it can give a runny nose and nasty headache with withdrawal symptoms. But that's it. I'm actually >> > walking really funny lately and have horrible horrible pain from my spine thru my hip down to my knee and rest of my right leg. I've been told by a few people it turns in when I walk. >> > >> > This message was sent from s' iPhone. Apologies if it does not format corectly. >> > >> > On Oct 3, 2011, at 9:19 PM, Michele Casey wrote: >> > >> > > >> > > >> > > What are you taking for the pain? And how is it helping you? Are you waiting for surgery? Or are you trying to find a doctor to do the surgery? >> > > >> > > Michele >> > > >> > > ________________________________ >> > > >> > > To: " tetheredspinalcord " < tetheredspinalcord > >> > > Sent: Monday, October 3, 2011 7:06 PM >> > > Subject: Re: Re: how many times >> > > >> > > >> > > My normal primary dr also is my prescribing dr of my narcotics. I still have to take pee tests and such but she understands how much I'm suffering and is just trying to get me buy till maybe a surgery works to fix it. >> > > >> > > This message was sent from s' iPhone. Apologies if it does not format corectly. >> > > >> > > >> > > >> > > > How lucky you are, Michele, that someone is willing to prescribe a narcotic >> > > > med for you. My daughter suffers with weight gain from neurontin (now on >> > > > Lyrica, but don't see how that would be any different) and at age 21 this >> > > > is very hard for her as it is, I would guess, about 40 pounds. She still has >> > > > pain as well though she says that without the meds, she doesn't think she >> > > > would get out of bed in the morning. Please keep us posted regarding >> > > > surgery for you and good wishes for another great success! >> > > > Randee >> > > > >> > > > >> > > > In a message dated 10/1/2011 8:53:42 P.M. Central Daylight Time, >> > > > micheled723@... writes: >> > > > >> > > > Hello >> > > > >> > > > Yes you are right it is difficult to know when to have surgery, I have had >> > > > 2 already, but each time I do I feel great all my symptoms go away >> > > > totally. I can tell that I am at that point of surgery. I do know of a person >> > > > that waited too long and one day went to stand up and fell down and never >> > > > walked again. I don't want that to happen to me. I am a nurse and I try to >> > > > stay active. I am taking oxycontin 2 times a day and that helps me with the >> > > > pain, for me its all the other symptoms that I struggle with. >> > > > The leg weakness and tightness. >> > > > >> > > > I do have a wonderful NS in Denver Colorado and he does these surgeries >> > > > alot.. >> > > > He never suggests waiting if I am having symptoms and since I have had >> > > > such great results from the past surgery. I hope that I make the right choice >> > > > and that this will be the last time. >> > > > >> > > > ________________________________ >> > > > From: " _Randeejae@..._ (mailto:Randeejae@...) " >> > > > <_Randeejae@..._ (mailto:Randeejae@...) > >> > > > To: _tetheredspinalcord _ >> > > > (mailto:tetheredspinalcord ) >> > > > Sent: Saturday, October 1, 2011 5:24 AM >> > > > Subject: Re: Re: how many times >> > > > >> > > > Hi Michele, >> > > > It is a tough call at your age and having already had one surgery when/if >> > > > to do another. I know you are frightened of developing new problems though >> > > > one has to balance that with the fact that surgery can cause problems as >> > > > well...with new scar tissue etc. I think the NSGs turning you down are >> > > > trying to be responsible and know that surgery for pain is usually not >> > > > recommended as the odds are low of it helping. The " weakness " may be what >> > > > they >> > > > told my daughter was " perceived " weakness in that she had normal strength >> > > > in >> > > > her legs but she felt " weak " .. She had three surgeries for those >> > > > issues..our fourth NSG didn't operate until she had had a couple of >> > > > episodes of >> > > > incontinence and difficult issues with constipation along with the >> > > > feelings you >> > > > mentioned. She hasn't had a return of incontinence but the other issues >> > > > remain. I am just grateful she didn't come out worse than she went in as I >> > > > thought this last surgery was not a great idea. >> > > > >> > > > Good luck in making these very very difficult decisions. >> > > > Randee >> > > > >> > > > In a message dated 9/30/2011 10:55:35 P.M. Central Daylight Time, >> > > > _micheled723@..._ (mailto:micheled723@...) writes: >> > > > >> > > > Thank you for responding to me. I must say I am so sorry for what you >> > > > have been through. I can tell when I am tehtered because I get tightness >> > > > in my >> > > > back with pain, leg wekness, I also have heard that if you are having >> > > > symptoms than you should have the surgery to prevent serious issues, loss >> > > > of >> > > > bowel, bladder. I have not experienced that yet. >> > > > >> > > > I am tethered at the sacrum area, which that area usually tends to cause >> > > > kidney stones I have had 4 kidney stone surgeries and I never do get rid >> > > > of >> > > > them. >> > > > >> > > > I give you such respect for dealing with your condition the way you do and >> > > > I only hope that I will be as brave and forgiving if my outcome would be >> > > > as yours. >> > > > >> > > > I would like to know the condition you were in before your first surgery? >> > > > What symptoms did you have and why is your spine tethered. For me I was >> > > > born with spina bifida occulta. >> > > > >> > > > Take care and I hope only good things for you. >> > > > >> > > > ________________________________ >> > > > From: JBobin <__jlbobin@..._ (mailto:_jlbobin@...) _ >> > > > (mailto:_jlbobin@..._ (mailto:jlbobin@...) ) > >> > > > To: __tetheredspinalcord _ >> > > > (mailto:_tetheredspinalcord ) _ >> > > > (mailto:_tetheredspinalcord _ >> > > > (mailto:tetheredspinalcord ) ) >> > > > Sent: Friday, September 30, 2011 1:01 AM >> > > > Subject: Re: Re: how many times >> > > > >> > > > I think the max # of surgeries is really dependent on the person and what >> > > > condition their back is in. For me, it was 3, and the end result of the >> > > > final one was complete paralysis @ T12. While the total number of surgeries >> > > > someone can have is dependent on the person, regardless, the risk of >> > > > complications increases with each subsequent surgery. Only your MD can tell >> > > > you how much he or she feels the risk has increased and then its up to you >> > > > and your MD to decide if the potential benefits are worth the risks. For >> > > > me, >> > > > I knew there was a fairly significant increase in risk (compared to the two >> > > > previous surgeries) with my last one. But I was seriously depressed (even >> > > > suicidal) going into my third surgery. I had lost significant function in a >> > > > very short period of time (a couple months). I could no longer drive. I was >> > > > still walking with bilateral AFOs and forearm crutches, but even that was >> > > > marginal. I was essentially paralyzed below my knees at that point. My legs >> > > > would give out whenever they felt like it sending me crashing to the >> > > > ground. >> > > > I knew, whether I did the surgery or not, I would be in a wheelchair and >> > > > wouldn't be walking for long and felt that whatever the risk, I had to take >> > > > the chance that I could get better. While I didn't improve neurologically >> > > > (and even got worse than when I went into surgery), my life got much >> > > > better. >> > > > Because of the surgical outcome, I got the opportunity to go to the best >> > > > neuro rehab in the SE which changed my life. >> > > > >> > > > Its just something you are going to have to discuss with your MD and then >> > > > decide if that risk is something you can live with. Medicine is more of an >> > > > art than a science and your MD is making an educated guess when it comes to >> > > > risk and %s. I'm always asked - I have no animosity towards my neurosurg. I >> > > > don't think there was any malpractice or did anything wrong. Its just >> > > > something we knew could (but didn't think) would happen. I still think he >> > > > is >> > > > a very talented neurosurgeon and would highly recommend him. He has a >> > > > fabulous bedside manner (hard to find in neurosurgeons). >> > > > >> > > > Its a difficult decision. I've made it 3 times. None of the decisions came >> > > > easily (well, I think the first one came a little too easily, because I >> > > > wasn't educated as I should have been. I knew him to be a highly skilled >> > > > neurosurgeon and took his word as gospel). >> > > > >> > > > Best wishes >> > > > >> > > > Jenn >> > > > >> > > > On Fri, Sep 30, 2011 at 1:29 AM, Michele Casey <__micheled723@..._ >> > > > (mailto:_micheled723@...) _ >> > > > (mailto:_micheled723@..._ (mailto:micheled723@...) ) >wrote: >> > > > >> > > > > ** >> > > > > >> > > > > >> > > > > I have had 2 de-tetherings in 2 years and I believe I need another one. >> > > > > Does anyone know how many times a person can do this? I do know if you >> > > > are >> > > > > having symtoms then the surgery should not be put off due to >> > > > complications >> > > > > that cannot be reversed. I would like to know how many surgeries one can >> > > > > handle? >> > > > > >> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2011 Report Share Posted October 6, 2011 I agree. If u Chamblee prevent it, all the better. Bc u r right. Once its gone, its unlikely that surgery will reverse it. Although, after multiple surgeries, the surgery itself can cause it. I'm proof of that one. The point if my message was more to dispel that image that most ppl have of incontinence. Most ppl with SCI/D are not in diapers. And its not as bad as one would imagine. I know bc even w my medical background, that was the image that first popped in my mind. Jenn ~~~Sent from my Samsung Infuse 4G~~~ > Jenn > > I do understand the misconception of diapers, I do say it lightly. But I do know that with a tethered cord the chance of losing bowel and bladder control can happen and then it does not come back. I actually have bladder retention, but I don't want to wait to long to have surgery and have to cath myself, my surgeon says that if you wait too long there is no going back the damage has been done. I am a nurse and I know it is not a big deal to cath yourself, but if I can prevent it I will. I of course will do what my surgeon advises, he had done my surgeries, I have had 2 now, so I trust my surgeon very much. Also once you lose that control over you bladder cathing will not fix the problem to make it possible to someday go back to using the bathroom as you once did before, and cathing also can cause infection, plus you always have leakage. > Michele > > > ________________________________ > > To: tetheredspinalcord > Sent: Thursday, October 6, 2011 9:25 AM > Subject: Re: Re: how many times > > > > Michele > > Even if u lose continence, u wouldn't b in a diaper. U would b cathing and > doing a bowel program. No diapers. I think that is a huge misconception > about neurogenic bowel & bladder and incontinence associated with them. In > fact, diapers are one of the worst things someone with incontinence and > altered sensation can do. It is just a recipe for skin breakdown that gets > infected and doesn't heal. So put diaper-wearing-nursing home > patient-sitting in the hallway in a Wheelchair image outta ur mind. I think > a lot a ppl have it and its simply not the case. I promise, its not as bad > as one would imagine. Personally I would rather Cath... at least until I'm > able to squat over a public john :-) lord knows I have a BM mote frequently > with my program than before I was even DC and dealt with constipation. > > Jenn > > PS sorry I can't edit the message I'm responding to. My phone wont let me > ... r maybe I just can't figure it out. I could on my iPhone, but can't seem > to on my Droid. > > ~~~Sent from my Samsung Infuse 4G~~~ > >> Linsay >> >> I also have a lot of low back pain, my legs are very weak and they seem to > get weaker daily. I also have problems with kidney stones it seems I can > never get rid of them. I already have had 4 lithos. When I bend at the > waist it seems my legs want to give out on me, and I get floaters in my > eyes. I am not woeking since my last surgery,I am a nurse and the sitting > to charrt then getting up and bending down just seemed to make my symptoms > worse. Not to mention the fatigue. Now that I am home atleast I can go lay > down and be still for awhile. I have 2 great kids who help me around the > house, I am blessed to have them. The beginning of summer I was able to mow > my lawn it wasn't easy, but I did it, now I cannot make it, my legs are too > weak. And from what my NS says the symptoms can get worse as fast as over > night and I worry once we lose continence even after the surgery that will > not correct itself. I don't want to be in a diaper so when >> the weakness and pain get bad I would rather have the surgery. OH and > yes, me too with the constipation. Plus as I said the weather is changing > and I hurt worse when its cold. >> >> Michele >> >> >> ________________________________ >> >> To: " tetheredspinalcord " < > tetheredspinalcord > >> Sent: Wednesday, October 5, 2011 9:21 PM >> Subject: Re: Re: how many times >> >> >> >> Well besides pain. Horrible constipation which I know the meds are making > worse but when I can go it's very difficult to go. My right leg is numb > feels like I'm dragging it and turns in. So does my other foot. I can't do > much lifting without after a little while needing to lay down or I'll pass > out from the pain. Also been have multiply uti and stone problems. And I > think the something is getting worse because I'm really starting to look > like the hunch back of noter dame. I know bad spelling lol. >> >> This message was sent from s' iPhone. Apologies if it does not > format corectly. >> >> >> >>> >>> >>> Please let me know what symptoms you are having? >>> Michele >>> >>> ________________________________ >>> >>> To: " tetheredspinalcord " < > tetheredspinalcord > >>> Sent: Wednesday, October 5, 2011 12:05 PM >>> Subject: Re: Re: how many times >>> >>> >>> I used a pedi so now because of my age he can't do the surgery. The > others I have seen don't feel my symptoms warrant the surgery. I had a MRI a > year ago that showed a retether I'm 26 now. I totally agree with the temps > and night and day stuff. I tried oxcotin but made me sick to my stomach. >>> >>> This message was sent from s' iPhone. Apologies if it does not > format corectly. >>> >>> >>> >>> > Hello >>> > >>> > I have never tried opana, but I do take oxycontin 2 times daily and > that helps me, now that the weather is changing I am feeling alittle bit > worse in the am and pm when the temp changes. Have you had another MRI? do > you know if you are tethered again? Or are you going on how you feel? >>> > >>> > I finally scheduled my MRI for this wk, but I have been tethered 2 > times and have had 2 surgeries so I can tell the way my body feels. Like you > both times I had surgery I have come home feeling great, night and day > results. I am afraid of waiting too long as you know sometimes the symptoms > will not go away even after surgery if we wait to long. >>> > >>> > Are you having trouble finding a surgeon who will do the surgery? The > surgeon who did your first one does not want to repeat again? Or does he > feel it is too risky? Or is he waiting for your symptoms to get worse first? > Thats what I don't want to hear----lets wait until it gets worse. As I have > said before I know someone who waited too long and when he went to stand up > he fell to the floor and never got up again. I will do all I can to prevent > that if I can. >>> > >>> > I have had 2 children before I even knew I had a tethered cord, I am so > glad you were able to carry a baby, and I am sure it must be hard at times > when you are having trouble just getting around yourself. You are very > strong and should be very proud of yourself. I am sorry I don't know if I > asked you this before or if you mind telling me your age? >>> > >>> > Well until I hear from you take care and my best >>> > Michele >>> > >>> > ________________________________ >>> > >>> > To: " tetheredspinalcord " < > tetheredspinalcord > >>> > Sent: Monday, October 3, 2011 7:32 PM >>> > Subject: Re: Re: how many times >>> > >>> > >>> > I am on Opana 20mgs every 12 hours and I am on diludid 4mg every six > hours as needed for break thru pain, thy also will give me soma 350mgs > because sometimes I get horrible back spasms where I can fall from a > standing position to my knees and it takes a few days to recover. I am > desperately trying to find a dr who will try surgery again. I was so happy > after my first surgery it was amazing! No meds pain free bladder got better > and bowel got better too! Then I had a baby and now I'm worse then the frat > time. I have a very very high pain tolerance but I do feel the the meds they > have me on at the moment atleast let me get out of bed most days, and take > care of m daughter the best that I can. The Opana ER is great I feel cause I > lasts about 12 hours and I don't have any high feelings from it. Sometimes > if I'm out though and can't get to take it right away it can give a runny > nose and nasty headache with withdrawal symptoms. But that's it. I'm > actually >>> > walking really funny lately and have horrible horrible pain from my > spine thru my hip down to my knee and rest of my right leg. I've been told > by a few people it turns in when I walk. >>> > >>> > This message was sent from s' iPhone. Apologies if it does not > format corectly. >>> > >>> > On Oct 3, 2011, at 9:19 PM, Michele Casey > wrote: >>> > >>> > > >>> > > >>> > > What are you taking for the pain? And how is it helping you? Are you > waiting for surgery? Or are you trying to find a doctor to do the surgery? >>> > > >>> > > Michele >>> > > >>> > > ________________________________ >>> > > >>> > > To: " tetheredspinalcord " < > tetheredspinalcord > >>> > > Sent: Monday, October 3, 2011 7:06 PM >>> > > Subject: Re: Re: how many times >>> > > >>> > > >>> > > My normal primary dr also is my prescribing dr of my narcotics. I > still have to take pee tests and such but she understands how much I'm > suffering and is just trying to get me buy till maybe a surgery works to fix > it. >>> > > >>> > > This message was sent from s' iPhone. Apologies if it does not > format corectly. >>> > > >>> > > >>> > > >>> > > > How lucky you are, Michele, that someone is willing to prescribe a > narcotic >>> > > > med for you. My daughter suffers with weight gain from neurontin > (now on >>> > > > Lyrica, but don't see how that would be any different) and at age > 21 this >>> > > > is very hard for her as it is, I would guess, about 40 pounds. She > still has >>> > > > pain as well though she says that without the meds, she doesn't > think she >>> > > > would get out of bed in the morning. Please keep us posted > regarding >>> > > > surgery for you and good wishes for another great success! >>> > > > Randee >>> > > > >>> > > > >>> > > > In a message dated 10/1/2011 8:53:42 P.M. Central Daylight Time, >>> > > > micheled723@... writes: >>> > > > >>> > > > Hello >>> > > > >>> > > > Yes you are right it is difficult to know when to have surgery, I > have had >>> > > > 2 already, but each time I do I feel great all my symptoms go away >>> > > > totally. I can tell that I am at that point of surgery. I do know > of a person >>> > > > that waited too long and one day went to stand up and fell down and > never >>> > > > walked again. I don't want that to happen to me. I am a nurse and I > try to >>> > > > stay active. I am taking oxycontin 2 times a day and that helps me > with the >>> > > > pain, for me its all the other symptoms that I struggle with. >>> > > > The leg weakness and tightness. >>> > > > >>> > > > I do have a wonderful NS in Denver Colorado and he does these > surgeries >>> > > > alot.. >>> > > > He never suggests waiting if I am having symptoms and since I have > had >>> > > > such great results from the past surgery. I hope that I make the > right choice >>> > > > and that this will be the last time. >>> > > > >>> > > > ________________________________ >>> > > > From: " _Randeejae@..._ (mailto:Randeejae@...) " >>> > > > <_Randeejae@..._ (mailto:Randeejae@...) > >>> > > > To: _tetheredspinalcord _ >>> > > > (mailto:tetheredspinalcord ) >>> > > > Sent: Saturday, October 1, 2011 5:24 AM >>> > > > Subject: Re: Re: how many times >>> > > > >>> > > > Hi Michele, >>> > > > It is a tough call at your age and having already had one surgery > when/if >>> > > > to do another. I know you are frightened of developing new problems > though >>> > > > one has to balance that with the fact that surgery can cause > problems as >>> > > > well...with new scar tissue etc. I think the NSGs turning you down > are >>> > > > trying to be responsible and know that surgery for pain is usually > not >>> > > > recommended as the odds are low of it helping. The " weakness " may > be what >>> > > > they >>> > > > told my daughter was " perceived " weakness in that she had normal > strength >>> > > > in >>> > > > her legs but she felt " weak " .. She had three surgeries for those >>> > > > issues..our fourth NSG didn't operate until she had had a couple of > >>> > > > episodes of >>> > > > incontinence and difficult issues with constipation along with the >>> > > > feelings you >>> > > > mentioned. She hasn't had a return of incontinence but the other > issues >>> > > > remain. I am just grateful she didn't come out worse than she went > in as I >>> > > > thought this last surgery was not a great idea. >>> > > > >>> > > > Good luck in making these very very difficult decisions. >>> > > > Randee >>> > > > >>> > > > In a message dated 9/30/2011 10:55:35 P.M. Central Daylight Time, >>> > > > _micheled723@..._ (mailto:micheled723@...) writes: >>> > > > >>> > > > Thank you for responding to me. I must say I am so sorry for what > you >>> > > > have been through. I can tell when I am tehtered because I get > tightness >>> > > > in my >>> > > > back with pain, leg wekness, I also have heard that if you are > having >>> > > > symptoms than you should have the surgery to prevent serious > issues, loss >>> > > > of >>> > > > bowel, bladder. I have not experienced that yet. >>> > > > >>> > > > I am tethered at the sacrum area, which that area usually tends to > cause >>> > > > kidney stones I have had 4 kidney stone surgeries and I never do > get rid >>> > > > of >>> > > > them. >>> > > > >>> > > > I give you such respect for dealing with your condition the way you > do and >>> > > > I only hope that I will be as brave and forgiving if my outcome > would be >>> > > > as yours. >>> > > > >>> > > > I would like to know the condition you were in before your first > surgery? >>> > > > What symptoms did you have and why is your spine tethered. For me I > was >>> > > > born with spina bifida occulta. >>> > > > >>> > > > Take care and I hope only good things for you. >>> > > > >>> > > > ________________________________ >>> > > > From: JBobin <__jlbobin@..._ (mailto:_jlbobin@...) _ >>> > > > (mailto:_jlbobin@..._ (mailto:jlbobin@...) ) > >>> > > > To: __tetheredspinalcord _ >>> > > > (mailto:_tetheredspinalcord ) _ >>> > > > (mailto:_tetheredspinalcord _ >>> > > > (mailto:tetheredspinalcord ) ) >>> > > > Sent: Friday, September 30, 2011 1:01 AM >>> > > > Subject: Re: Re: how many times >>> > > > >>> > > > I think the max # of surgeries is really dependent on the person > and what >>> > > > condition their back is in. For me, it was 3, and the end result of > the >>> > > > final one was complete paralysis @ T12. While the total number of > surgeries >>> > > > someone can have is dependent on the person, regardless, the risk > of >>> > > > complications increases with each subsequent surgery. Only your MD > can tell >>> > > > you how much he or she feels the risk has increased and then its up > to you >>> > > > and your MD to decide if the potential benefits are worth the > risks. For >>> > > > me, >>> > > > I knew there was a fairly significant increase in risk (compared to > the two >>> > > > previous surgeries) with my last one. But I was seriously depressed > (even >>> > > > suicidal) going into my third surgery. I had lost significant > function in a >>> > > > very short period of time (a couple months). I could no longer > drive. I was >>> > > > still walking with bilateral AFOs and forearm crutches, but even > that was >>> > > > marginal. I was essentially paralyzed below my knees at that point. > My legs >>> > > > would give out whenever they felt like it sending me crashing to > the >>> > > > ground. >>> > > > I knew, whether I did the surgery or not, I would be in a > wheelchair and >>> > > > wouldn't be walking for long and felt that whatever the risk, I had > to take >>> > > > the chance that I could get better. While I didn't improve > neurologically >>> > > > (and even got worse than when I went into surgery), my life got > much >>> > > > better. >>> > > > Because of the surgical outcome, I got the opportunity to go to the > best >>> > > > neuro rehab in the SE which changed my life. >>> > > > >>> > > > Its just something you are going to have to discuss with your MD > and then >>> > > > decide if that risk is something you can live with. Medicine is > more of an >>> > > > art than a science and your MD is making an educated guess when it > comes to >>> > > > risk and %s. I'm always asked - I have no animosity towards my > neurosurg. I >>> > > > don't think there was any malpractice or did anything wrong. Its > just >>> > > > something we knew could (but didn't think) would happen. I still > think he >>> > > > is >>> > > > a very talented neurosurgeon and would highly recommend him. He has > a >>> > > > fabulous bedside manner (hard to find in neurosurgeons). >>> > > > >>> > > > Its a difficult decision. I've made it 3 times. None of the > decisions came >>> > > > easily (well, I think the first one came a little too easily, > because I >>> > > > wasn't educated as I should have been. I knew him to be a highly > skilled >>> > > > neurosurgeon and took his word as gospel). >>> > > > >>> > > > Best wishes >>> > > > >>> > > > Jenn >>> > > > >>> > > > On Fri, Sep 30, 2011 at 1:29 AM, Michele Casey > <__micheled723@..._ >>> > > > (mailto:_micheled723@...) _ >>> > > > (mailto:_micheled723@..._ (mailto:micheled723@...) ) >>wrote: >>> > > > >>> > > > > ** >>> > > > > >>> > > > > >>> > > > > I have had 2 de-tetherings in 2 years and I believe I need > another one. >>> > > > > Does anyone know how many times a person can do this? I do know > if you >>> > > > are >>> > > > > having symtoms then the surgery should not be put off due to >>> > > > complications >>> > > > > that cannot be reversed. I would like to know how many surgeries > one can >>> > > > > handle? >>> > > > > >>> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2011 Report Share Posted October 7, 2011 Jenn  How many surgeries have you had??? After one of your surgeries did it cause more problems than you had before the surgery??? Michele ________________________________ To: tetheredspinalcord Sent: Thursday, October 6, 2011 3:09 PM Subject: Re: Re: how many times  I agree. If u Chamblee prevent it, all the better. Bc u r right. Once its gone, its unlikely that surgery will reverse it. Although, after multiple surgeries, the surgery itself can cause it. I'm proof of that one. The point if my message was more to dispel that image that most ppl have of incontinence. Most ppl with SCI/D are not in diapers. And its not as bad as one would imagine. I know bc even w my medical background, that was the image that first popped in my mind. Jenn ~~~Sent from my Samsung Infuse 4G~~~ > Jenn > > I do understand the misconception of diapers, I do say it lightly. But I do know that with a tethered cord the chance of losing bowel and bladder control can happen and then it does not come back. I actually have bladder retention, but I don't want to wait to long to have surgery and have to cath myself, my surgeon says that if you wait too long there is no going back the damage has been done. I am a nurse and I know it is not a big deal to cath yourself, but if I can prevent it I will. I of course will do what my surgeon advises, he had done my surgeries, I have had 2 now, so I trust my surgeon very much. Also once you lose that control over you bladder cathing will not fix the problem to make it possible to someday go back to using the bathroom as you once did before, and cathing also can cause infection, plus you always have leakage. > Michele > > > ________________________________ > > To: tetheredspinalcord > Sent: Thursday, October 6, 2011 9:25 AM > Subject: Re: Re: how many times > > > > Michele > > Even if u lose continence, u wouldn't b in a diaper. U would b cathing and > doing a bowel program. No diapers. I think that is a huge misconception > about neurogenic bowel & bladder and incontinence associated with them. In > fact, diapers are one of the worst things someone with incontinence and > altered sensation can do. It is just a recipe for skin breakdown that gets > infected and doesn't heal. So put diaper-wearing-nursing home > patient-sitting in the hallway in a Wheelchair image outta ur mind. I think > a lot a ppl have it and its simply not the case. I promise, its not as bad > as one would imagine. Personally I would rather Cath... at least until I'm > able to squat over a public john :-) lord knows I have a BM mote frequently > with my program than before I was even DC and dealt with constipation. > > Jenn > > PS sorry I can't edit the message I'm responding to. My phone wont let me > ... r maybe I just can't figure it out. I could on my iPhone, but can't seem > to on my Droid. > > ~~~Sent from my Samsung Infuse 4G~~~ > >> Linsay >> >> I also have a lot of low back pain, my legs are very weak and they seem to > get weaker daily. I also have problems with kidney stones it seems I can > never get rid of them. I already have had 4 lithos. When I bend at the > waist it seems my legs want to give out on me, and I get floaters in my > eyes. I am not woeking since my last surgery,I am a nurse and the sitting > to charrt then getting up and bending down just seemed to make my symptoms > worse. Not to mention the fatigue. Now that I am home atleast I can go lay > down and be still for awhile. I have 2 great kids who help me around the > house, I am blessed to have them. The beginning of summer I was able to mow > my lawn it wasn't easy, but I did it, now I cannot make it, my legs are too > weak. And from what my NS says the symptoms can get worse as fast as over > night and I worry once we lose continence even after the surgery that will > not correct itself. I don't want to be in a diaper so when >> the weakness and pain get bad I would rather have the surgery. OH and > yes, me too with the constipation. Plus as I said the weather is changing > and I hurt worse when its cold. >> >> Michele >> >> >> ________________________________ >> >> To: " tetheredspinalcord " < > tetheredspinalcord > >> Sent: Wednesday, October 5, 2011 9:21 PM >> Subject: Re: Re: how many times >> >> >> >> Well besides pain. Horrible constipation which I know the meds are making > worse but when I can go it's very difficult to go. My right leg is numb > feels like I'm dragging it and turns in. So does my other foot. I can't do > much lifting without after a little while needing to lay down or I'll pass > out from the pain. Also been have multiply uti and stone problems. And I > think the something is getting worse because I'm really starting to look > like the hunch back of noter dame. I know bad spelling lol. >> >> This message was sent from s' iPhone. Apologies if it does not > format corectly. >> >> >> >>> >>> >>> Please let me know what symptoms you are having? >>> Michele >>> >>> ________________________________ >>> >>> To: " tetheredspinalcord " < > tetheredspinalcord > >>> Sent: Wednesday, October 5, 2011 12:05 PM >>> Subject: Re: Re: how many times >>> >>> >>> I used a pedi so now because of my age he can't do the surgery. The > others I have seen don't feel my symptoms warrant the surgery. I had a MRI a > year ago that showed a retether I'm 26 now. I totally agree with the temps > and night and day stuff. I tried oxcotin but made me sick to my stomach. >>> >>> This message was sent from s' iPhone. Apologies if it does not > format corectly. >>> >>> >>> >>> > Hello >>> > >>> > I have never tried opana, but I do take oxycontin 2 times daily and > that helps me, now that the weather is changing I am feeling alittle bit > worse in the am and pm when the temp changes. Have you had another MRI? do > you know if you are tethered again? Or are you going on how you feel? >>> > >>> > I finally scheduled my MRI for this wk, but I have been tethered 2 > times and have had 2 surgeries so I can tell the way my body feels. Like you > both times I had surgery I have come home feeling great, night and day > results. I am afraid of waiting too long as you know sometimes the symptoms > will not go away even after surgery if we wait to long. >>> > >>> > Are you having trouble finding a surgeon who will do the surgery? The > surgeon who did your first one does not want to repeat again? Or does he > feel it is too risky? Or is he waiting for your symptoms to get worse first? > Thats what I don't want to hear----lets wait until it gets worse. As I have > said before I know someone who waited too long and when he went to stand up > he fell to the floor and never got up again. I will do all I can to prevent > that if I can. >>> > >>> > I have had 2 children before I even knew I had a tethered cord, I am so > glad you were able to carry a baby, and I am sure it must be hard at times > when you are having trouble just getting around yourself. You are very > strong and should be very proud of yourself. I am sorry I don't know if I > asked you this before or if you mind telling me your age? >>> > >>> > Well until I hear from you take care and my best >>> > Michele >>> > >>> > ________________________________ >>> > >>> > To: " tetheredspinalcord " < > tetheredspinalcord > >>> > Sent: Monday, October 3, 2011 7:32 PM >>> > Subject: Re: Re: how many times >>> > >>> > >>> > I am on Opana 20mgs every 12 hours and I am on diludid 4mg every six > hours as needed for break thru pain, thy also will give me soma 350mgs > because sometimes I get horrible back spasms where I can fall from a > standing position to my knees and it takes a few days to recover. I am > desperately trying to find a dr who will try surgery again. I was so happy > after my first surgery it was amazing! No meds pain free bladder got better > and bowel got better too! Then I had a baby and now I'm worse then the frat > time. I have a very very high pain tolerance but I do feel the the meds they > have me on at the moment atleast let me get out of bed most days, and take > care of m daughter the best that I can. The Opana ER is great I feel cause I > lasts about 12 hours and I don't have any high feelings from it. Sometimes > if I'm out though and can't get to take it right away it can give a runny > nose and nasty headache with withdrawal symptoms. But that's it. I'm > actually >>> > walking really funny lately and have horrible horrible pain from my > spine thru my hip down to my knee and rest of my right leg. I've been told > by a few people it turns in when I walk. >>> > >>> > This message was sent from s' iPhone. Apologies if it does not > format corectly. >>> > >>> > On Oct 3, 2011, at 9:19 PM, Michele Casey > wrote: >>> > >>> > > >>> > > >>> > > What are you taking for the pain? And how is it helping you? Are you > waiting for surgery? Or are you trying to find a doctor to do the surgery? >>> > > >>> > > Michele >>> > > >>> > > ________________________________ >>> > > >>> > > To: " tetheredspinalcord " < > tetheredspinalcord > >>> > > Sent: Monday, October 3, 2011 7:06 PM >>> > > Subject: Re: Re: how many times >>> > > >>> > > >>> > > My normal primary dr also is my prescribing dr of my narcotics. I > still have to take pee tests and such but she understands how much I'm > suffering and is just trying to get me buy till maybe a surgery works to fix > it. >>> > > >>> > > This message was sent from s' iPhone. Apologies if it does not > format corectly. >>> > > >>> > > >>> > > >>> > > > How lucky you are, Michele, that someone is willing to prescribe a > narcotic >>> > > > med for you. My daughter suffers with weight gain from neurontin > (now on >>> > > > Lyrica, but don't see how that would be any different) and at age > 21 this >>> > > > is very hard for her as it is, I would guess, about 40 pounds. She > still has >>> > > > pain as well though she says that without the meds, she doesn't > think she >>> > > > would get out of bed in the morning. Please keep us posted > regarding >>> > > > surgery for you and good wishes for another great success! >>> > > > Randee >>> > > > >>> > > > >>> > > > In a message dated 10/1/2011 8:53:42 P.M. Central Daylight Time, >>> > > > micheled723@... writes: >>> > > > >>> > > > Hello >>> > > > >>> > > > Yes you are right it is difficult to know when to have surgery, I > have had >>> > > > 2 already, but each time I do I feel great all my symptoms go away >>> > > > totally. I can tell that I am at that point of surgery. I do know > of a person >>> > > > that waited too long and one day went to stand up and fell down and > never >>> > > > walked again. I don't want that to happen to me. I am a nurse and I > try to >>> > > > stay active. I am taking oxycontin 2 times a day and that helps me > with the >>> > > > pain, for me its all the other symptoms that I struggle with. >>> > > > The leg weakness and tightness. >>> > > > >>> > > > I do have a wonderful NS in Denver Colorado and he does these > surgeries >>> > > > alot.. >>> > > > He never suggests waiting if I am having symptoms and since I have > had >>> > > > such great results from the past surgery. I hope that I make the > right choice >>> > > > and that this will be the last time. >>> > > > >>> > > > ________________________________ >>> > > > From: " _Randeejae@..._ (mailto:Randeejae@...) " >>> > > > <_Randeejae@..._ (mailto:Randeejae@...) > >>> > > > To: _tetheredspinalcord _ >>> > > > (mailto:tetheredspinalcord ) >>> > > > Sent: Saturday, October 1, 2011 5:24 AM >>> > > > Subject: Re: Re: how many times >>> > > > >>> > > > Hi Michele, >>> > > > It is a tough call at your age and having already had one surgery > when/if >>> > > > to do another. I know you are frightened of developing new problems > though >>> > > > one has to balance that with the fact that surgery can cause > problems as >>> > > > well...with new scar tissue etc. I think the NSGs turning you down > are >>> > > > trying to be responsible and know that surgery for pain is usually > not >>> > > > recommended as the odds are low of it helping. The " weakness " may > be what >>> > > > they >>> > > > told my daughter was " perceived " weakness in that she had normal > strength >>> > > > in >>> > > > her legs but she felt " weak " .. She had three surgeries for those >>> > > > issues..our fourth NSG didn't operate until she had had a couple of > >>> > > > episodes of >>> > > > incontinence and difficult issues with constipation along with the >>> > > > feelings you >>> > > > mentioned. She hasn't had a return of incontinence but the other > issues >>> > > > remain. I am just grateful she didn't come out worse than she went > in as I >>> > > > thought this last surgery was not a great idea. >>> > > > >>> > > > Good luck in making these very very difficult decisions. >>> > > > Randee >>> > > > >>> > > > In a message dated 9/30/2011 10:55:35 P.M. Central Daylight Time, >>> > > > _micheled723@..._ (mailto:micheled723@...) writes: >>> > > > >>> > > > Thank you for responding to me. I must say I am so sorry for what > you >>> > > > have been through. I can tell when I am tehtered because I get > tightness >>> > > > in my >>> > > > back with pain, leg wekness, I also have heard that if you are > having >>> > > > symptoms than you should have the surgery to prevent serious > issues, loss >>> > > > of >>> > > > bowel, bladder. I have not experienced that yet. >>> > > > >>> > > > I am tethered at the sacrum area, which that area usually tends to > cause >>> > > > kidney stones I have had 4 kidney stone surgeries and I never do > get rid >>> > > > of >>> > > > them. >>> > > > >>> > > > I give you such respect for dealing with your condition the way you > do and >>> > > > I only hope that I will be as brave and forgiving if my outcome > would be >>> > > > as yours. >>> > > > >>> > > > I would like to know the condition you were in before your first > surgery? >>> > > > What symptoms did you have and why is your spine tethered. For me I > was >>> > > > born with spina bifida occulta. >>> > > > >>> > > > Take care and I hope only good things for you. >>> > > > >>> > > > ________________________________ >>> > > > From: JBobin <__jlbobin@..._ (mailto:_jlbobin@...) _ >>> > > > (mailto:_jlbobin@..._ (mailto:jlbobin@...) ) > >>> > > > To: __tetheredspinalcord _ >>> > > > (mailto:_tetheredspinalcord ) _ >>> > > > (mailto:_tetheredspinalcord _ >>> > > > (mailto:tetheredspinalcord ) ) >>> > > > Sent: Friday, September 30, 2011 1:01 AM >>> > > > Subject: Re: Re: how many times >>> > > > >>> > > > I think the max # of surgeries is really dependent on the person > and what >>> > > > condition their back is in. For me, it was 3, and the end result of > the >>> > > > final one was complete paralysis @ T12. While the total number of > surgeries >>> > > > someone can have is dependent on the person, regardless, the risk > of >>> > > > complications increases with each subsequent surgery. Only your MD > can tell >>> > > > you how much he or she feels the risk has increased and then its up > to you >>> > > > and your MD to decide if the potential benefits are worth the > risks. For >>> > > > me, >>> > > > I knew there was a fairly significant increase in risk (compared to > the two >>> > > > previous surgeries) with my last one. But I was seriously depressed > (even >>> > > > suicidal) going into my third surgery. I had lost significant > function in a >>> > > > very short period of time (a couple months). I could no longer > drive. I was >>> > > > still walking with bilateral AFOs and forearm crutches, but even > that was >>> > > > marginal. I was essentially paralyzed below my knees at that point. > My legs >>> > > > would give out whenever they felt like it sending me crashing to > the >>> > > > ground. >>> > > > I knew, whether I did the surgery or not, I would be in a > wheelchair and >>> > > > wouldn't be walking for long and felt that whatever the risk, I had > to take >>> > > > the chance that I could get better. While I didn't improve > neurologically >>> > > > (and even got worse than when I went into surgery), my life got > much >>> > > > better. >>> > > > Because of the surgical outcome, I got the opportunity to go to the > best >>> > > > neuro rehab in the SE which changed my life. >>> > > > >>> > > > Its just something you are going to have to discuss with your MD > and then >>> > > > decide if that risk is something you can live with. Medicine is > more of an >>> > > > art than a science and your MD is making an educated guess when it > comes to >>> > > > risk and %s. I'm always asked - I have no animosity towards my > neurosurg. I >>> > > > don't think there was any malpractice or did anything wrong. Its > just >>> > > > something we knew could (but didn't think) would happen. I still > think he >>> > > > is >>> > > > a very talented neurosurgeon and would highly recommend him. He has > a >>> > > > fabulous bedside manner (hard to find in neurosurgeons). >>> > > > >>> > > > Its a difficult decision. I've made it 3 times. None of the > decisions came >>> > > > easily (well, I think the first one came a little too easily, > because I >>> > > > wasn't educated as I should have been. I knew him to be a highly > skilled >>> > > > neurosurgeon and took his word as gospel). >>> > > > >>> > > > Best wishes >>> > > > >>> > > > Jenn >>> > > > >>> > > > On Fri, Sep 30, 2011 at 1:29 AM, Michele Casey > <__micheled723@..._ >>> > > > (mailto:_micheled723@...) _ >>> > > > (mailto:_micheled723@..._ (mailto:micheled723@...) ) >>wrote: >>> > > > >>> > > > > ** >>> > > > > >>> > > > > >>> > > > > I have had 2 de-tetherings in 2 years and I believe I need > another one. >>> > > > > Does anyone know how many times a person can do this? I do know > if you >>> > > > are >>> > > > > having symtoms then the surgery should not be put off due to >>> > > > complications >>> > > > > that cannot be reversed. I would like to know how many surgeries > one can >>> > > > > handle? >>> > > > > >>> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2011 Report Share Posted October 7, 2011 I have had 3. None of them made me any better. When I was DC with SBO, TC and diastematomyelia I knee he was a skilled neurosurgeon. When he talked abt incontinence it terrified me (enter the diaper-wearing nursing home image I referenced before in my mind) and I did it. My only symptom was pain (aside from a few others I had all my life that I didn't know weren't normal). I retethered in 4 mos. I put off surgery #2 for 1.5 years bc I swore I would never do it again. The original MD said it was " medically impossible " to retether that quickly. Then I found a pediatric neurosurg. He was cool w me putting off surgery as long as I only had pain and didn't have new neuro decline. The second untethering was much worse than my scans indicated. I had also developed arachnoiditis (found when he did the surgery). I lost a little function in my left leg. I went home w a walker. I regained the function, but about 2 mos after the surgery, I started losing function very rapidly in both legs. By 4 mos post-op, I could barely walk even with bilateral AFOs and forearm crutches. A MRI revealed I had developed hydrosyringomyelia. I was given the choice of surgery or no because the decline from a syrinx will often plateau. I had no plateau in sight. The pain and spasms were incredible. I was no longer able to drive and could barely even get around my own home at that point so I did it (an OT would have done wonders at that point). When I woke from the surgery, I was paralyzed @ T12. The MRI doesn't shoe any reason. There are several theories, but all are problems acused by the multiple surgeries to the same area. That's the readers digest version. Jenn ~~~Sent from my Samsung Infuse 4G~~~ > ** > > > Jenn > > How many surgeries have you had??? After one of your surgeries did it > cause more problems than you had before the surgery??? > Michele > > ________________________________ > > To: tetheredspinalcord > Sent: Thursday, October 6, 2011 3:09 PM > Subject: Re: Re: how many times > > > I agree. If u Chamblee prevent it, all the better. Bc u r right. Once its > gone, its unlikely that surgery will reverse it. Although, after multiple > surgeries, the surgery itself can cause it. I'm proof of that one. > > The point if my message was more to dispel that image that most ppl have of > incontinence. Most ppl with SCI/D are not in diapers. And its not as bad as > one would imagine. I know bc even w my medical background, that was the > image that first popped in my mind. > > Jenn > > ~~~Sent from my Samsung Infuse 4G~~~ > > > Jenn > > > > I do understand the misconception of diapers, I do say it lightly. But I > do know that with a tethered cord the chance of losing bowel and bladder > control can happen and then it does not come back. I actually have bladder > retention, but I don't want to wait to long to have surgery and have to > cath > myself, my surgeon says that if you wait too long there is no going back > the > damage has been done. I am a nurse and I know it is not a big deal to cath > yourself, but if I can prevent it I will. I of course will do what my > surgeon advises, he had done my surgeries, I have had 2 now, so I trust my > surgeon very much. Also once you lose that control over you bladder cathing > will not fix the problem to make it possible to someday go back to using > the > bathroom as you once did before, and cathing also can cause infection, plus > you always have leakage. > > Michele > > > > > > ________________________________ > > > > To: tetheredspinalcord > > Sent: Thursday, October 6, 2011 9:25 AM > > Subject: Re: Re: how many times > > > > > > > > Michele > > > > Even if u lose continence, u wouldn't b in a diaper. U would b cathing > and > > doing a bowel program. No diapers. I think that is a huge misconception > > about neurogenic bowel & bladder and incontinence associated with them. > In > > fact, diapers are one of the worst things someone with incontinence and > > altered sensation can do. It is just a recipe for skin breakdown that > gets > > infected and doesn't heal. So put diaper-wearing-nursing home > > patient-sitting in the hallway in a Wheelchair image outta ur mind. I > think > > a lot a ppl have it and its simply not the case. I promise, its not as > bad > > as one would imagine. Personally I would rather Cath... at least until > I'm > > able to squat over a public john :-) lord knows I have a BM mote > frequently > > with my program than before I was even DC and dealt with constipation. > > > > Jenn > > > > PS sorry I can't edit the message I'm responding to. My phone wont let me > > ... r maybe I just can't figure it out. I could on my iPhone, but can't > seem > > to on my Droid. > > > > ~~~Sent from my Samsung Infuse 4G~~~ > > > >> Linsay > >> > >> I also have a lot of low back pain, my legs are very weak and they seem > to > > get weaker daily. I also have problems with kidney stones it seems I can > > never get rid of them. I already have had 4 lithos. When I bend at the > > waist it seems my legs want to give out on me, and I get floaters in my > > eyes. I am not woeking since my last surgery,I am a nurse and the sitting > > to charrt then getting up and bending down just seemed to make my > symptoms > > worse. Not to mention the fatigue. Now that I am home atleast I can go > lay > > down and be still for awhile. I have 2 great kids who help me around the > > house, I am blessed to have them. The beginning of summer I was able to > mow > > my lawn it wasn't easy, but I did it, now I cannot make it, my legs are > too > > weak. And from what my NS says the symptoms can get worse as fast as over > > night and I worry once we lose continence even after the surgery that > will > > not correct itself. I don't want to be in a diaper so when > >> the weakness and pain get bad I would rather have the surgery. OH and > > yes, me too with the constipation. Plus as I said the weather is changing > > and I hurt worse when its cold. > >> > >> Michele > >> > >> > >> ________________________________ > >> > >> To: " tetheredspinalcord " < > > tetheredspinalcord > > >> Sent: Wednesday, October 5, 2011 9:21 PM > >> Subject: Re: Re: how many times > >> > >> > >> > >> Well besides pain. Horrible constipation which I know the meds are > making > > worse but when I can go it's very difficult to go. My right leg is numb > > feels like I'm dragging it and turns in. So does my other foot. I can't > do > > much lifting without after a little while needing to lay down or I'll > pass > > out from the pain. Also been have multiply uti and stone problems. And I > > think the something is getting worse because I'm really starting to look > > like the hunch back of noter dame. I know bad spelling lol. > >> > >> This message was sent from s' iPhone. Apologies if it does not > > format corectly. > >> > >> On Oct 5, 2011, at 10:29 PM, Michele Casey > wrote: > >> > >>> > >>> > >>> Please let me know what symptoms you are having? > >>> Michele > >>> > >>> ________________________________ > >>> > >>> To: " tetheredspinalcord " < > > tetheredspinalcord > > >>> Sent: Wednesday, October 5, 2011 12:05 PM > >>> Subject: Re: Re: how many times > >>> > >>> > >>> I used a pedi so now because of my age he can't do the surgery. The > > others I have seen don't feel my symptoms warrant the surgery. I had a > MRI > a > > year ago that showed a retether I'm 26 now. I totally agree with the > temps > > and night and day stuff. I tried oxcotin but made me sick to my stomach. > >>> > >>> This message was sent from s' iPhone. Apologies if it does not > > format corectly. > >>> > >>> On Oct 3, 2011, at 9:54 PM, Michele Casey > wrote: > >>> > >>> > Hello > >>> > > >>> > I have never tried opana, but I do take oxycontin 2 times daily and > > that helps me, now that the weather is changing I am feeling alittle bit > > worse in the am and pm when the temp changes. Have you had another MRI? > do > > you know if you are tethered again? Or are you going on how you feel? > >>> > > >>> > I finally scheduled my MRI for this wk, but I have been tethered 2 > > times and have had 2 surgeries so I can tell the way my body feels. Like > you > > both times I had surgery I have come home feeling great, night and day > > results. I am afraid of waiting too long as you know sometimes the > symptoms > > will not go away even after surgery if we wait to long. > >>> > > >>> > Are you having trouble finding a surgeon who will do the surgery? The > > surgeon who did your first one does not want to repeat again? Or does he > > feel it is too risky? Or is he waiting for your symptoms to get worse > first? > > Thats what I don't want to hear----lets wait until it gets worse. As I > have > > said before I know someone who waited too long and when he went to stand > up > > he fell to the floor and never got up again. I will do all I can to > prevent > > that if I can. > >>> > > >>> > I have had 2 children before I even knew I had a tethered cord, I am > so > > glad you were able to carry a baby, and I am sure it must be hard at > times > > when you are having trouble just getting around yourself. You are very > > strong and should be very proud of yourself. I am sorry I don't know if I > > asked you this before or if you mind telling me your age? > >>> > > >>> > Well until I hear from you take care and my best > >>> > Michele > >>> > > >>> > ________________________________ > >>> > > >>> > To: " tetheredspinalcord " < > > tetheredspinalcord > > >>> > Sent: Monday, October 3, 2011 7:32 PM > >>> > Subject: Re: Re: how many times > >>> > > >>> > > >>> > I am on Opana 20mgs every 12 hours and I am on diludid 4mg every six > > hours as needed for break thru pain, thy also will give me soma 350mgs > > because sometimes I get horrible back spasms where I can fall from a > > standing position to my knees and it takes a few days to recover. I am > > desperately trying to find a dr who will try surgery again. I was so > happy > > after my first surgery it was amazing! No meds pain free bladder got > better > > and bowel got better too! Then I had a baby and now I'm worse then the > frat > > time. I have a very very high pain tolerance but I do feel the the meds > they > > have me on at the moment atleast let me get out of bed most days, and > take > > care of m daughter the best that I can. The Opana ER is great I feel > cause > I > > lasts about 12 hours and I don't have any high feelings from it. > Sometimes > > if I'm out though and can't get to take it right away it can give a runny > > nose and nasty headache with withdrawal symptoms. But that's it. I'm > > actually > >>> > walking really funny lately and have horrible horrible pain from my > > spine thru my hip down to my knee and rest of my right leg. I've been > told > > by a few people it turns in when I walk. > >>> > > >>> > This message was sent from s' iPhone. Apologies if it does not > > format corectly. > >>> > > >>> > On Oct 3, 2011, at 9:19 PM, Michele Casey > > wrote: > >>> > > >>> > > > >>> > > > >>> > > What are you taking for the pain? And how is it helping you? Are > you > > waiting for surgery? Or are you trying to find a doctor to do the > surgery? > >>> > > > >>> > > Michele > >>> > > > >>> > > ________________________________ > >>> > > > >>> > > To: " tetheredspinalcord " < > > tetheredspinalcord > > >>> > > Sent: Monday, October 3, 2011 7:06 PM > >>> > > Subject: Re: Re: how many times > >>> > > > >>> > > > >>> > > My normal primary dr also is my prescribing dr of my narcotics. I > > still have to take pee tests and such but she understands how much I'm > > suffering and is just trying to get me buy till maybe a surgery works to > fix > > it. > >>> > > > >>> > > This message was sent from s' iPhone. Apologies if it does > not > > format corectly. > >>> > > > >>> > > > >>> > > > >>> > > > How lucky you are, Michele, that someone is willing to prescribe > a > > narcotic > >>> > > > med for you. My daughter suffers with weight gain from neurontin > > (now on > >>> > > > Lyrica, but don't see how that would be any different) and at age > > 21 this > >>> > > > is very hard for her as it is, I would guess, about 40 pounds. > She > > still has > >>> > > > pain as well though she says that without the meds, she doesn't > > think she > >>> > > > would get out of bed in the morning. Please keep us posted > > regarding > >>> > > > surgery for you and good wishes for another great success! > >>> > > > Randee > >>> > > > > >>> > > > > >>> > > > In a message dated 10/1/2011 8:53:42 P.M. Central Daylight Time, > >>> > > > micheled723@... writes: > >>> > > > > >>> > > > Hello > >>> > > > > >>> > > > Yes you are right it is difficult to know when to have surgery, I > > have had > >>> > > > 2 already, but each time I do I feel great all my symptoms go > away > >>> > > > totally. I can tell that I am at that point of surgery. I do know > > of a person > >>> > > > that waited too long and one day went to stand up and fell down > and > > never > >>> > > > walked again. I don't want that to happen to me. I am a nurse and > I > > try to > >>> > > > stay active. I am taking oxycontin 2 times a day and that helps > me > > with the > >>> > > > pain, for me its all the other symptoms that I struggle with. > >>> > > > The leg weakness and tightness. > >>> > > > > >>> > > > I do have a wonderful NS in Denver Colorado and he does these > > surgeries > >>> > > > alot.. > >>> > > > He never suggests waiting if I am having symptoms and since I > have > > had > >>> > > > such great results from the past surgery. I hope that I make the > > right choice > >>> > > > and that this will be the last time. > >>> > > > > >>> > > > ________________________________ > >>> > > > From: " _Randeejae@..._ (mailto:Randeejae@...) " > >>> > > > <_Randeejae@..._ (mailto:Randeejae@...) > > >>> > > > To: _tetheredspinalcord _ > >>> > > > (mailto:tetheredspinalcord ) > >>> > > > Sent: Saturday, October 1, 2011 5:24 AM > >>> > > > Subject: Re: Re: how many times > >>> > > > > >>> > > > Hi Michele, > >>> > > > It is a tough call at your age and having already had one surgery > > when/if > >>> > > > to do another. I know you are frightened of developing new > problems > > though > >>> > > > one has to balance that with the fact that surgery can cause > > problems as > >>> > > > well...with new scar tissue etc. I think the NSGs turning you > down > > are > >>> > > > trying to be responsible and know that surgery for pain is > usually > > not > >>> > > > recommended as the odds are low of it helping. The " weakness " may > > be what > >>> > > > they > >>> > > > told my daughter was " perceived " weakness in that she had normal > > strength > >>> > > > in > >>> > > > her legs but she felt " weak " .. She had three surgeries for those > >>> > > > issues..our fourth NSG didn't operate until she had had a couple > of > > > >>> > > > episodes of > >>> > > > incontinence and difficult issues with constipation along with > the > >>> > > > feelings you > >>> > > > mentioned. She hasn't had a return of incontinence but the other > > issues > >>> > > > remain. I am just grateful she didn't come out worse than she > went > > in as I > >>> > > > thought this last surgery was not a great idea. > >>> > > > > >>> > > > Good luck in making these very very difficult decisions. > >>> > > > Randee > >>> > > > > >>> > > > In a message dated 9/30/2011 10:55:35 P.M. Central Daylight Time, > >>> > > > _micheled723@..._ (mailto:micheled723@...) writes: > >>> > > > > >>> > > > Thank you for responding to me. I must say I am so sorry for what > > you > >>> > > > have been through. I can tell when I am tehtered because I get > > tightness > >>> > > > in my > >>> > > > back with pain, leg wekness, I also have heard that if you are > > having > >>> > > > symptoms than you should have the surgery to prevent serious > > issues, loss > >>> > > > of > >>> > > > bowel, bladder. I have not experienced that yet. > >>> > > > > >>> > > > I am tethered at the sacrum area, which that area usually tends > to > > cause > >>> > > > kidney stones I have had 4 kidney stone surgeries and I never do > > get rid > >>> > > > of > >>> > > > them. > >>> > > > > >>> > > > I give you such respect for dealing with your condition the way > you > > do and > >>> > > > I only hope that I will be as brave and forgiving if my outcome > > would be > >>> > > > as yours. > >>> > > > > >>> > > > I would like to know the condition you were in before your first > > surgery? > >>> > > > What symptoms did you have and why is your spine tethered. For me > I > > was > >>> > > > born with spina bifida occulta. > >>> > > > > >>> > > > Take care and I hope only good things for you. > >>> > > > > >>> > > > ________________________________ > >>> > > > From: JBobin <__jlbobin@..._ (mailto:_jlbobin@...) _ > >>> > > > (mailto:_jlbobin@..._ (mailto:jlbobin@...) ) > > >>> > > > To: __tetheredspinalcord _ > >>> > > > (mailto:_tetheredspinalcord ) _ > >>> > > > (mailto:_tetheredspinalcord _ > >>> > > > (mailto:tetheredspinalcord ) ) > >>> > > > Sent: Friday, September 30, 2011 1:01 AM > >>> > > > Subject: Re: Re: how many times > >>> > > > > >>> > > > I think the max # of surgeries is really dependent on the person > > and what > >>> > > > condition their back is in. For me, it was 3, and the end result > of > > the > >>> > > > final one was complete paralysis @ T12. While the total number of > > surgeries > >>> > > > someone can have is dependent on the person, regardless, the risk > > of > >>> > > > complications increases with each subsequent surgery. Only your > MD > > can tell > >>> > > > you how much he or she feels the risk has increased and then its > up > > to you > >>> > > > and your MD to decide if the potential benefits are worth the > > risks. For > >>> > > > me, > >>> > > > I knew there was a fairly significant increase in risk (compared > to > > the two > >>> > > > previous surgeries) with my last one. But I was seriously > depressed > > (even > >>> > > > suicidal) going into my third surgery. I had lost significant > > function in a > >>> > > > very short period of time (a couple months). I could no longer > > drive. I was > >>> > > > still walking with bilateral AFOs and forearm crutches, but even > > that was > >>> > > > marginal. I was essentially paralyzed below my knees at that > point. > > My legs > >>> > > > would give out whenever they felt like it sending me crashing to > > the > >>> > > > ground. > >>> > > > I knew, whether I did the surgery or not, I would be in a > > wheelchair and > >>> > > > wouldn't be walking for long and felt that whatever the risk, I > had > > to take > >>> > > > the chance that I could get better. While I didn't improve > > neurologically > >>> > > > (and even got worse than when I went into surgery), my life got > > much > >>> > > > better. > >>> > > > Because of the surgical outcome, I got the opportunity to go to > the > > best > >>> > > > neuro rehab in the SE which changed my life. > >>> > > > > >>> > > > Its just something you are going to have to discuss with your MD > > and then > >>> > > > decide if that risk is something you can live with. Medicine is > > more of an > >>> > > > art than a science and your MD is making an educated guess when > it > > comes to > >>> > > > risk and %s. I'm always asked - I have no animosity towards my > > neurosurg. I > >>> > > > don't think there was any malpractice or did anything wrong. Its > > just > >>> > > > something we knew could (but didn't think) would happen. I still > > think he > >>> > > > is > >>> > > > a very talented neurosurgeon and would highly recommend him. He > has > > a > >>> > > > fabulous bedside manner (hard to find in neurosurgeons). > >>> > > > > >>> > > > Its a difficult decision. I've made it 3 times. None of the > > decisions came > >>> > > > easily (well, I think the first one came a little too easily, > > because I > >>> > > > wasn't educated as I should have been. I knew him to be a highly > > skilled > >>> > > > neurosurgeon and took his word as gospel). > >>> > > > > >>> > > > Best wishes > >>> > > > > >>> > > > Jenn > >>> > > > > >>> > > > On Fri, Sep 30, 2011 at 1:29 AM, Michele Casey > > <__micheled723@..._ > >>> > > > (mailto:_micheled723@...) _ > >>> > > > (mailto:_micheled723@..._ (mailto:micheled723@...) ) > >>wrote: > >>> > > > > >>> > > > > ** > >>> > > > > > >>> > > > > > >>> > > > > I have had 2 de-tetherings in 2 years and I believe I need > > another one. > >>> > > > > Does anyone know how many times a person can do this? I do know > > if you > >>> > > > are > >>> > > > > having symtoms then the surgery should not be put off due to > >>> > > > complications > >>> > > > > that cannot be reversed. I would like to know how many > surgeries > > one can > >>> > > > > handle? > >>> > > > > > >>> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2011 Report Share Posted October 8, 2011 Jenn Thanks for your history, I am so sorry the way things turned out for you. I must say for all you have been through you have such a great outlook. I am going on #3, but I get better after each surgery. I did this last time come out with a little bladder retention, but my leg pain and weakness went away. I hope the same this time. I still wonder if it is good to wait or if we should have surgery sooner. Actually my NS said if you are not having symtoms but you are tethered it is best to wait until you have symtoms, by the time I get my MRI I am retethered and I am having back pain and weakness plus daily headaches that are at times debilitating, so I guess I am ready to have the surgery. I guess in the end we never know what is in store for us or what our journey will be we just have to take it and make the most of it, and I am glad I have had the chance to get to know you, I definately have learned from you and you are an inspiration to many. Michele ________________________________ To: tetheredspinalcord Sent: Thursday, October 6, 2011 10:29 PM Subject: Re: Re: how many times I have had 3. None of them made me any better. When I was DC with SBO, TC and diastematomyelia I knee he was a skilled neurosurgeon. When he talked abt incontinence it terrified me (enter the diaper-wearing nursing home image I referenced before in my mind) and I did it. My only symptom was pain (aside from a few others I had all my life that I didn't know weren't normal). I retethered in 4 mos. I put off surgery #2 for 1.5 years bc I swore I would never do it again. The original MD said it was " medically impossible " to retether that quickly. Then I found a pediatric neurosurg. He was cool w me putting off surgery as long as I only had pain and didn't have new neuro decline. The second untethering was much worse than my scans indicated. I had also developed arachnoiditis (found when he did the surgery). I lost a little function in my left leg. I went home w a walker. I regained the function, but about 2 mos after the surgery, I started losing function very rapidly in both legs. By 4 mos post-op, I could barely walk even with bilateral AFOs and forearm crutches. A MRI revealed I had developed hydrosyringomyelia. I was given the choice of surgery or no because the decline from a syrinx will often plateau. I had no plateau in sight. The pain and spasms were incredible. I was no longer able to drive and could barely even get around my own home at that point so I did it (an OT would have done wonders at that point). When I woke from the surgery, I was paralyzed @ T12. The MRI doesn't shoe any reason. There are several theories, but all are problems acused by the multiple surgeries to the same area. That's the readers digest version. Jenn ~~~Sent from my Samsung Infuse 4G~~~ > ** > > > Jenn > > How many surgeries have you had??? After one of your surgeries did it > cause more problems than you had before the surgery??? > Michele > > ________________________________ > > To: tetheredspinalcord > Sent: Thursday, October 6, 2011 3:09 PM > Subject: Re: Re: how many times > > > I agree. If u Chamblee prevent it, all the better. Bc u r right. Once its > gone, its unlikely that surgery will reverse it. Although, after multiple > surgeries, the surgery itself can cause it. I'm proof of that one. > > The point if my message was more to dispel that image that most ppl have of > incontinence. Most ppl with SCI/D are not in diapers. And its not as bad as > one would imagine. I know bc even w my medical background, that was the > image that first popped in my mind. > > Jenn > > ~~~Sent from my Samsung Infuse 4G~~~ > > > Jenn > > > > I do understand the misconception of diapers, I do say it lightly. But I > do know that with a tethered cord the chance of losing bowel and bladder > control can happen and then it does not come back. I actually have bladder > retention, but I don't want to wait to long to have surgery and have to > cath > myself, my surgeon says that if you wait too long there is no going back > the > damage has been done. I am a nurse and I know it is not a big deal to cath > yourself, but if I can prevent it I will. I of course will do what my > surgeon advises, he had done my surgeries, I have had 2 now, so I trust my > surgeon very much. Also once you lose that control over you bladder cathing > will not fix the problem to make it possible to someday go back to using > the > bathroom as you once did before, and cathing also can cause infection, plus > you always have leakage. > > Michele > > > > > > ________________________________ > > > > To: tetheredspinalcord > > Sent: Thursday, October 6, 2011 9:25 AM > > Subject: Re: Re: how many times > > > > > > > > Michele > > > > Even if u lose continence, u wouldn't b in a diaper. U would b cathing > and > > doing a bowel program. No diapers. I think that is a huge misconception > > about neurogenic bowel & bladder and incontinence associated with them. > In > > fact, diapers are one of the worst things someone with incontinence and > > altered sensation can do. It is just a recipe for skin breakdown that > gets > > infected and doesn't heal. So put diaper-wearing-nursing home > > patient-sitting in the hallway in a Wheelchair image outta ur mind. I > think > > a lot a ppl have it and its simply not the case. I promise, its not as > bad > > as one would imagine. Personally I would rather Cath... at least until > I'm > > able to squat over a public john :-) lord knows I have a BM mote > frequently > > with my program than before I was even DC and dealt with constipation. > > > > Jenn > > > > PS sorry I can't edit the message I'm responding to. My phone wont let me > > ... r maybe I just can't figure it out. I could on my iPhone, but can't > seem > > to on my Droid. > > > > ~~~Sent from my Samsung Infuse 4G~~~ > > > >> Linsay > >> > >> I also have a lot of low back pain, my legs are very weak and they seem > to > > get weaker daily. I also have problems with kidney stones it seems I can > > never get rid of them. I already have had 4 lithos. When I bend at the > > waist it seems my legs want to give out on me, and I get floaters in my > > eyes. I am not woeking since my last surgery,I am a nurse and the sitting > > to charrt then getting up and bending down just seemed to make my > symptoms > > worse. Not to mention the fatigue. Now that I am home atleast I can go > lay > > down and be still for awhile. I have 2 great kids who help me around the > > house, I am blessed to have them. The beginning of summer I was able to > mow > > my lawn it wasn't easy, but I did it, now I cannot make it, my legs are > too > > weak. And from what my NS says the symptoms can get worse as fast as over > > night and I worry once we lose continence even after the surgery that > will > > not correct itself. I don't want to be in a diaper so when > >> the weakness and pain get bad I would rather have the surgery. OH and > > yes, me too with the constipation. Plus as I said the weather is changing > > and I hurt worse when its cold. > >> > >> Michele > >> > >> > >> ________________________________ > >> > >> To: " tetheredspinalcord " < > > tetheredspinalcord > > >> Sent: Wednesday, October 5, 2011 9:21 PM > >> Subject: Re: Re: how many times > >> > >> > >> > >> Well besides pain. Horrible constipation which I know the meds are > making > > worse but when I can go it's very difficult to go. My right leg is numb > > feels like I'm dragging it and turns in. So does my other foot. I can't > do > > much lifting without after a little while needing to lay down or I'll > pass > > out from the pain. Also been have multiply uti and stone problems. And I > > think the something is getting worse because I'm really starting to look > > like the hunch back of noter dame. I know bad spelling lol. > >> > >> This message was sent from s' iPhone. Apologies if it does not > > format corectly. > >> > >> On Oct 5, 2011, at 10:29 PM, Michele Casey > wrote: > >> > >>> > >>> > >>> Please let me know what symptoms you are having? > >>> Michele > >>> > >>> ________________________________ > >>> > >>> To: " tetheredspinalcord " < > > tetheredspinalcord > > >>> Sent: Wednesday, October 5, 2011 12:05 PM > >>> Subject: Re: Re: how many times > >>> > >>> > >>> I used a pedi so now because of my age he can't do the surgery. The > > others I have seen don't feel my symptoms warrant the surgery. I had a > MRI > a > > year ago that showed a retether I'm 26 now. I totally agree with the > temps > > and night and day stuff. I tried oxcotin but made me sick to my stomach. > >>> > >>> This message was sent from s' iPhone. Apologies if it does not > > format corectly. > >>> > >>> On Oct 3, 2011, at 9:54 PM, Michele Casey > wrote: > >>> > >>> > Hello > >>> > > >>> > I have never tried opana, but I do take oxycontin 2 times daily and > > that helps me, now that the weather is changing I am feeling alittle bit > > worse in the am and pm when the temp changes. Have you had another MRI? > do > > you know if you are tethered again? Or are you going on how you feel? > >>> > > >>> > I finally scheduled my MRI for this wk, but I have been tethered 2 > > times and have had 2 surgeries so I can tell the way my body feels. Like > you > > both times I had surgery I have come home feeling great, night and day > > results. I am afraid of waiting too long as you know sometimes the > symptoms > > will not go away even after surgery if we wait to long. > >>> > > >>> > Are you having trouble finding a surgeon who will do the surgery? The > > surgeon who did your first one does not want to repeat again? Or does he > > feel it is too risky? Or is he waiting for your symptoms to get worse > first? > > Thats what I don't want to hear----lets wait until it gets worse. As I > have > > said before I know someone who waited too long and when he went to stand > up > > he fell to the floor and never got up again. I will do all I can to > prevent > > that if I can. > >>> > > >>> > I have had 2 children before I even knew I had a tethered cord, I am > so > > glad you were able to carry a baby, and I am sure it must be hard at > times > > when you are having trouble just getting around yourself. You are very > > strong and should be very proud of yourself. I am sorry I don't know if I > > asked you this before or if you mind telling me your age? > >>> > > >>> > Well until I hear from you take care and my best > >>> > Michele > >>> > > >>> > ________________________________ > >>> > > >>> > To: " tetheredspinalcord " < > > tetheredspinalcord > > >>> > Sent: Monday, October 3, 2011 7:32 PM > >>> > Subject: Re: Re: how many times > >>> > > >>> > > >>> > I am on Opana 20mgs every 12 hours and I am on diludid 4mg every six > > hours as needed for break thru pain, thy also will give me soma 350mgs > > because sometimes I get horrible back spasms where I can fall from a > > standing position to my knees and it takes a few days to recover. I am > > desperately trying to find a dr who will try surgery again. I was so > happy > > after my first surgery it was amazing! No meds pain free bladder got > better > > and bowel got better too! Then I had a baby and now I'm worse then the > frat > > time. I have a very very high pain tolerance but I do feel the the meds > they > > have me on at the moment atleast let me get out of bed most days, and > take > > care of m daughter the best that I can. The Opana ER is great I feel > cause > I > > lasts about 12 hours and I don't have any high feelings from it. > Sometimes > > if I'm out though and can't get to take it right away it can give a runny > > nose and nasty headache with withdrawal symptoms. But that's it. I'm > > actually > >>> > walking really funny lately and have horrible horrible pain from my > > spine thru my hip down to my knee and rest of my right leg. I've been > told > > by a few people it turns in when I walk. > >>> > > >>> > This message was sent from s' iPhone. Apologies if it does not > > format corectly. > >>> > > >>> > On Oct 3, 2011, at 9:19 PM, Michele Casey > > wrote: > >>> > > >>> > > > >>> > > > >>> > > What are you taking for the pain? And how is it helping you? Are > you > > waiting for surgery? Or are you trying to find a doctor to do the > surgery? > >>> > > > >>> > > Michele > >>> > > > >>> > > ________________________________ > >>> > > > >>> > > To: " tetheredspinalcord " < > > tetheredspinalcord > > >>> > > Sent: Monday, October 3, 2011 7:06 PM > >>> > > Subject: Re: Re: how many times > >>> > > > >>> > > > >>> > > My normal primary dr also is my prescribing dr of my narcotics. I > > still have to take pee tests and such but she understands how much I'm > > suffering and is just trying to get me buy till maybe a surgery works to > fix > > it. > >>> > > > >>> > > This message was sent from s' iPhone. Apologies if it does > not > > format corectly. > >>> > > > >>> > > > >>> > > > >>> > > > How lucky you are, Michele, that someone is willing to prescribe > a > > narcotic > >>> > > > med for you. My daughter suffers with weight gain from neurontin > > (now on > >>> > > > Lyrica, but don't see how that would be any different) and at age > > 21 this > >>> > > > is very hard for her as it is, I would guess, about 40 pounds. > She > > still has > >>> > > > pain as well though she says that without the meds, she doesn't > > think she > >>> > > > would get out of bed in the morning. Please keep us posted > > regarding > >>> > > > surgery for you and good wishes for another great success! > >>> > > > Randee > >>> > > > > >>> > > > > >>> > > > In a message dated 10/1/2011 8:53:42 P.M. Central Daylight Time, > >>> > > > micheled723@... writes: > >>> > > > > >>> > > > Hello > >>> > > > > >>> > > > Yes you are right it is difficult to know when to have surgery, I > > have had > >>> > > > 2 already, but each time I do I feel great all my symptoms go > away > >>> > > > totally. I can tell that I am at that point of surgery. I do know > > of a person > >>> > > > that waited too long and one day went to stand up and fell down > and > > never > >>> > > > walked again. I don't want that to happen to me. I am a nurse and > I > > try to > >>> > > > stay active. I am taking oxycontin 2 times a day and that helps > me > > with the > >>> > > > pain, for me its all the other symptoms that I struggle with. > >>> > > > The leg weakness and tightness. > >>> > > > > >>> > > > I do have a wonderful NS in Denver Colorado and he does these > > surgeries > >>> > > > alot.. > >>> > > > He never suggests waiting if I am having symptoms and since I > have > > had > >>> > > > such great results from the past surgery. I hope that I make the > > right choice > >>> > > > and that this will be the last time. > >>> > > > > >>> > > > ________________________________ > >>> > > > From: " _Randeejae@..._ (mailto:Randeejae@...) " > >>> > > > <_Randeejae@..._ (mailto:Randeejae@...) > > >>> > > > To: _tetheredspinalcord _ > >>> > > > (mailto:tetheredspinalcord ) > >>> > > > Sent: Saturday, October 1, 2011 5:24 AM > >>> > > > Subject: Re: Re: how many times > >>> > > > > >>> > > > Hi Michele, > >>> > > > It is a tough call at your age and having already had one surgery > > when/if > >>> > > > to do another. I know you are frightened of developing new > problems > > though > >>> > > > one has to balance that with the fact that surgery can cause > > problems as > >>> > > > well...with new scar tissue etc. I think the NSGs turning you > down > > are > >>> > > > trying to be responsible and know that surgery for pain is > usually > > not > >>> > > > recommended as the odds are low of it helping. The " weakness " may > > be what > >>> > > > they > >>> > > > told my daughter was " perceived " weakness in that she had normal > > strength > >>> > > > in > >>> > > > her legs but she felt " weak " .. She had three surgeries for those > >>> > > > issues..our fourth NSG didn't operate until she had had a couple > of > > > >>> > > > episodes of > >>> > > > incontinence and difficult issues with constipation along with > the > >>> > > > feelings you > >>> > > > mentioned. She hasn't had a return of incontinence but the other > > issues > >>> > > > remain. I am just grateful she didn't come out worse than she > went > > in as I > >>> > > > thought this last surgery was not a great idea. > >>> > > > > >>> > > > Good luck in making these very very difficult decisions. > >>> > > > Randee > >>> > > > > >>> > > > In a message dated 9/30/2011 10:55:35 P.M. Central Daylight Time, > >>> > > > _micheled723@..._ (mailto:micheled723@...) writes: > >>> > > > > >>> > > > Thank you for responding to me. I must say I am so sorry for what > > you > >>> > > > have been through. I can tell when I am tehtered because I get > > tightness > >>> > > > in my > >>> > > > back with pain, leg wekness, I also have heard that if you are > > having > >>> > > > symptoms than you should have the surgery to prevent serious > > issues, loss > >>> > > > of > >>> > > > bowel, bladder. I have not experienced that yet. > >>> > > > > >>> > > > I am tethered at the sacrum area, which that area usually tends > to > > cause > >>> > > > kidney stones I have had 4 kidney stone surgeries and I never do > > get rid > >>> > > > of > >>> > > > them. > >>> > > > > >>> > > > I give you such respect for dealing with your condition the way > you > > do and > >>> > > > I only hope that I will be as brave and forgiving if my outcome > > would be > >>> > > > as yours. > >>> > > > > >>> > > > I would like to know the condition you were in before your first > > surgery? > >>> > > > What symptoms did you have and why is your spine tethered. For me > I > > was > >>> > > > born with spina bifida occulta. > >>> > > > > >>> > > > Take care and I hope only good things for you. > >>> > > > > >>> > > > ________________________________ > >>> > > > From: JBobin <__jlbobin@..._ (mailto:_jlbobin@...) _ > >>> > > > (mailto:_jlbobin@..._ (mailto:jlbobin@...) ) > > >>> > > > To: __tetheredspinalcord _ > >>> > > > (mailto:_tetheredspinalcord ) _ > >>> > > > (mailto:_tetheredspinalcord _ > >>> > > > (mailto:tetheredspinalcord ) ) > >>> > > > Sent: Friday, September 30, 2011 1:01 AM > >>> > > > Subject: Re: Re: how many times > >>> > > > > >>> > > > I think the max # of surgeries is really dependent on the person > > and what > >>> > > > condition their back is in. For me, it was 3, and the end result > of > > the > >>> > > > final one was complete paralysis @ T12. While the total number of > > surgeries > >>> > > > someone can have is dependent on the person, regardless, the risk > > of > >>> > > > complications increases with each subsequent surgery. Only your > MD > > can tell > >>> > > > you how much he or she feels the risk has increased and then its > up > > to you > >>> > > > and your MD to decide if the potential benefits are worth the > > risks. For > >>> > > > me, > >>> > > > I knew there was a fairly significant increase in risk (compared > to > > the two > >>> > > > previous surgeries) with my last one. But I was seriously > depressed > > (even > >>> > > > suicidal) going into my third surgery. I had lost significant > > function in a > >>> > > > very short period of time (a couple months). I could no longer > > drive. I was > >>> > > > still walking with bilateral AFOs and forearm crutches, but even > > that was > >>> > > > marginal. I was essentially paralyzed below my knees at that > point. > > My legs > >>> > > > would give out whenever they felt like it sending me crashing to > > the > >>> > > > ground. > >>> > > > I knew, whether I did the surgery or not, I would be in a > > wheelchair and > >>> > > > wouldn't be walking for long and felt that whatever the risk, I > had > > to take > >>> > > > the chance that I could get better. While I didn't improve > > neurologically > >>> > > > (and even got worse than when I went into surgery), my life got > > much > >>> > > > better. > >>> > > > Because of the surgical outcome, I got the opportunity to go to > the > > best > >>> > > > neuro rehab in the SE which changed my life. > >>> > > > > >>> > > > Its just something you are going to have to discuss with your MD > > and then > >>> > > > decide if that risk is something you can live with. Medicine is > > more of an > >>> > > > art than a science and your MD is making an educated guess when > it > > comes to > >>> > > > risk and %s. I'm always asked - I have no animosity towards my > > neurosurg. I > >>> > > > don't think there was any malpractice or did anything wrong. Its > > just > >>> > > > something we knew could (but didn't think) would happen. I still > > think he > >>> > > > is > >>> > > > a very talented neurosurgeon and would highly recommend him. He > has > > a > >>> > > > fabulous bedside manner (hard to find in neurosurgeons). > >>> > > > > >>> > > > Its a difficult decision. I've made it 3 times. None of the > > decisions came > >>> > > > easily (well, I think the first one came a little too easily, > > because I > >>> > > > wasn't educated as I should have been. I knew him to be a highly > > skilled > >>> > > > neurosurgeon and took his word as gospel). > >>> > > > > >>> > > > Best wishes > >>> > > > > >>> > > > Jenn > >>> > > > > >>> > > > On Fri, Sep 30, 2011 at 1:29 AM, Michele Casey > > <__micheled723@..._ > >>> > > > (mailto:_micheled723@...) _ > >>> > > > (mailto:_micheled723@..._ (mailto:micheled723@...) ) > >>wrote: > >>> > > > > >>> > > > > ** > >>> > > > > > >>> > > > > > >>> > > > > I have had 2 de-tetherings in 2 years and I believe I need > > another one. > >>> > > > > Does anyone know how many times a person can do this? I do know > > if you > >>> > > > are > >>> > > > > having symtoms then the surgery should not be put off due to > >>> > > > complications > >>> > > > > that cannot be reversed. I would like to know how many > surgeries > > one can > >>> > > > > handle? > >>> > > > > > >>> > > > > Quote Link to comment Share on other sites More sharing options...
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