Guest guest Posted September 30, 2011 Report Share Posted September 30, 2011 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 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 September 30, 2011 Report Share Posted September 30, 2011 Hello, I agree with Jen! My daughter has already had 3 de-tetherings and is having a 4th this coming Tues and she just turned 6 in August :-( she always becomes symptomatic within a few weka after surgery and in the end needs another. We use the # 1 pediatric neuro in the world Dr. Ben Carson at johns Hopkins. He ha told me that they can continue to do the surgery every year until she is fully grown but at that point he will have to say no more because the risk is way to high. He say that a child continues to grow which allows the cord to grow thus leaving a area to cut that has not been touched before but in adults they are fully developed and each time you shave that area down you shorten the spine and the risk of nerve damage becomes higher. My daughter Amani has suffered permanent nerve damage to her Colin which as a result lost 50% of it and is going to lose the other 50% she has spasticity in her legs, muscle spasms, prolapsed urethra and tingling in her lower extremities. While I am aware at some point she will probably be paralyzed I would rather it be when she is an adult then as a child trying to survive in this world. I am old that her case is extremely rare and does not usually happen like this so for you a third surrey may be the charm!! The doctor has to discuss the risks with you and also weigh the pros and cons. Your pain and symptoms vs the risk of surgery. I know that making this decision is not easy to make but I will pray for you and that whatever decision you make is right because you chose it! Sometimes I write down the good things about doing it and the bad and then I decide based off of that. I tilt wish you the best and that everything works out the way you want!!! Corinn > 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 September 30, 2011 Report Share Posted September 30, 2011 My daughter has had four. I don't think she would try again but I was surprised she wanted the fourth. In a message dated 9/30/2011 2:15:06 A.M. Central Daylight Time, micheled723@... writes: 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? [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2011 Report Share Posted October 1, 2011 Thank you for responding to me, I have spina bifida occulta and I know without the surgery there is a chance of irreversible damage. I don't want to take the chance of dealing with those. Thank you once again, and I hope the best for yourr daughter she is very brave. ________________________________ To: tetheredspinalcord Sent: Friday, September 30, 2011 7:47 AM Subject: Re: Re: how many times  My daughter has had four. I don't think she would try again but I was surprised she wanted the fourth. In a message dated 9/30/2011 2:15:06 A.M. Central Daylight Time, micheled723@... writes: 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 1, 2011 Report Share Posted October 1, 2011 Are you having any symptoms? How was the tethered cord discovered? Randee In a message dated 9/30/2011 8:41:13 P.M. Central Daylight Time, micheled723@... writes: Thank you for responding to me, I have spina bifida occulta and I know without the surgery there is a chance of irreversible damage. I don't want to take the chance of dealing with those. Thank you once again, and I hope the best for yourr daughter she is very brave. ________________________________ From: " _Randeejae@..._ (mailto:Randeejae@...) " <_Randeejae@..._ (mailto:Randeejae@...) > To: _tetheredspinalcord _ (mailto:tetheredspinalcord ) Sent: Friday, September 30, 2011 7:47 AM Subject: Re: Re: how many times My daughter has had four. I don't think she would try again but I was surprised she wanted the fourth. In a message dated 9/30/2011 2:15:06 A.M. Central Daylight Time, _micheled723@..._ (mailto:micheled723@...) writes: 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? [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] [Non-text portions of this message have been removed] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2011 Report Share Posted October 1, 2011 Hello , I agree with Jen! My daughter has already had 3 de-tetherings and is having a 4th this coming Tues and she just turned 6 in August :-( she always becomes symptomatic within a few weka after surgery and in the end needs another. We use the # 1 pediatric neuro in the world Dr. Ben Carson at johns Hopkins. He ha told me that they can continue to do the surgery every year until she is fully grown but at that point he will have to say no more because the risk is way to high. He say that a child continues to grow which allows the cord to grow thus leaving a area to cut that has not been touched before but in adults they are fully developed and each time you shave that area down you shorten the spine and the risk of nerve damage becomes higher. My daughter Amani has suffered permanent nerve damage to her Colin which as a result lost 50% of it and is going to lose the other 50% she has spasticity in her legs, muscle spasms, prolapsed urethra and tingling in her lower extremities. While I am aware at some point she will probably be paralyzed I would rather it be when she is an adult then as a child trying to survive in this world. I am old that her case is extremely rare and does not usually happen like this so for you a third surrey may be the charm!! The doctor has to discuss the risks with you and also weigh the pros and cons. Your pain and symptoms vs the risk of surgery. I know that making this decision is not easy to make but I will pray for you and that whatever decision you make is right because you chose it! Sometimes I write down the good things about doing it and the bad and then I decide based off of that. I tilt wish you the best and that everything works out the way you want!!! Corinn > Thank you for responding to me, I have spina bifida occulta and I know without the surgery there is a chance of irreversible damage. I don't want to take the chance of dealing with those. Thank you once again, and I hope the best for yourr daughter she is very brave. > > ________________________________ > > To: tetheredspinalcord > Sent: Friday, September 30, 2011 7:47 AM > Subject: Re: Re: how many times > > > My daughter has had four. I don't think she would try again but I was > surprised she wanted the fourth. > > In a message dated 9/30/2011 2:15:06 A.M. Central Daylight Time, > micheled723@... writes: > > 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 1, 2011 Report Share Posted October 1, 2011 Thank you for responding to me. I am 41 years old and was born with spina bifida occulta. At the time I was born my mother was told the dimple on my back was only a birth mark. Two years ago I started having symptoms, but not up until that point. I have danced and did gymnastics my whole life and also carried 2 children with natural births. So I was surprised to learn of my condition. I have have 2 surgeries and I can tell by my body I am in need of another one. Being an adult my doctor is internal med. and he has never seen this case in the 30 years of practice. I do travel to have my surgeries with a surgeon with experience, at any rate it is still scary. I will pray for your daughter and your family, I can only hope that she can have the best childhood possible. I know how difficult this is for me so I am glad she is blessed with a loving mother. My best to you all. ________________________________ To: " tetheredspinalcord " <tetheredspinalcord > Sent: Friday, September 30, 2011 6:45 AM Subject: Re: Re: how many times  Hello, I agree with Jen! My daughter has already had 3 de-tetherings and is having a 4th this coming Tues and she just turned 6 in August :-( she always becomes symptomatic within a few weka after surgery and in the end needs another. We use the # 1 pediatric neuro in the world Dr. Ben Carson at johns Hopkins. He ha told me that they can continue to do the surgery every year until she is fully grown but at that point he will have to say no more because the risk is way to high. He say that a child continues to grow which allows the cord to grow thus leaving a area to cut that has not been touched before but in adults they are fully developed and each time you shave that area down you shorten the spine and the risk of nerve damage becomes higher. My daughter Amani has suffered permanent nerve damage to her Colin which as a result lost 50% of it and is going to lose the other 50% she has spasticity in her legs, muscle spasms, prolapsed urethra and tingling in her lower extremities. While I am aware at some point she will probably be paralyzed I would rather it be when she is an adult then as a child trying to survive in this world. I am old that her case is extremely rare and does not usually happen like this so for you a third surrey may be the charm!! The doctor has to discuss the risks with you and also weigh the pros and cons. Your pain and symptoms vs the risk of surgery. I know that making this decision is not easy to make but I will pray for you and that whatever decision you make is right because you chose it! Sometimes I write down the good things about doing it and the bad and then I decide based off of that. I tilt wish you the best and that everything works out the way you want!!! Corinn > 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 1, 2011 Report Share Posted October 1, 2011 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. ________________________________ To: 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 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 1, 2011 Report Share Posted October 1, 2011 I've had one. I'm 26 now my first was at 23. I'm desperately trying to find a dr who's willing to do it again. I had a pedi neuro do it in NYC the first time bc he was the only one who believed me and did a MRI to find out why I had all these crazy syptoms and pain after all the years not knowing. Although after I was educated and looked back on my childhood with my parents. Everything made more sense and I suffered due to my idiot pediatricians and all the doctors in my area for that matter. I'm really hoping to Find an adult one soon and that my insurance allows. Im still trying to pay bills from the last one. This message was sent from s' iPhone. Apologies if it does not format corectly. > Thank you for responding to me, I have spina bifida occulta and I know without the surgery there is a chance of irreversible damage. I don't want to take the chance of dealing with those. Thank you once again, and I hope the best for yourr daughter she is very brave. > > ________________________________ > > To: tetheredspinalcord > Sent: Friday, September 30, 2011 7:47 AM > Subject: Re: Re: how many times > > > My daughter has had four. I don't think she would try again but I was > surprised she wanted the fourth. > > In a message dated 9/30/2011 2:15:06 A.M. Central Daylight Time, > micheled723@... writes: > > 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 1, 2011 Report Share Posted October 1, 2011 I was born with SBO, TC, and diastematomyelia (split cord). I found out about the SBO after a car accident when I was 21 and about the others after a MRI when I was 24. The only symptom I had going into my first 2 surgeries was pain in my back, butt & legs. Hence the reason I never would have had the first surgery if I knew then what I know now. Jenn ~~~Sent from my Samsung Infuse 4G~~~ > 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. > > > ________________________________ > > To: 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@... >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 1, 2011 Report Share Posted October 1, 2011 Hello Jen, I realy like to respond on this, First of all you're right. But wath option did you have if you wait longer. On the end you need it anyway. But i agree Do not have a surgery to fast . Maby they should first look to new options like corection surgery. But only do the TC if no other option is avaible. It is just to worse for words that they not try other options first. A orthopedic surgian must have a much bigger place it a SB-team. No Doubt about this. They do not know enough about this now. Just my opinion. Jan Willem -----Oorspronkelijk bericht----- From: JBobin Sent: Saturday, October 01, 2011 8:25 AM To: tetheredspinalcord Subject: Re: Re: how many times I was born with SBO, TC, and diastematomyelia (split cord). I found out about the SBO after a car accident when I was 21 and about the others after a MRI when I was 24. The only symptom I had going into my first 2 surgeries was pain in my back, butt & legs. Hence the reason I never would have had the first surgery if I knew then what I know now. Jenn ~~~Sent from my Samsung Infuse 4G~~~ > 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. > > > ________________________________ > > To: 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@... >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 1, 2011 Report Share Posted October 1, 2011 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@... 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@...) > To: _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@...) >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? > > [Non-text portions of this message have been removed] > > > [Non-text portions of this message have been removed] ------------------------------------ NOT MEDICAL ADVICE. We Are Not Doctors. Need help with list?Email Darlene: _darlene_self@..._ (mailto:darlene_self@...) or : _hollygolightly1916@..._ (mailto:hollygolightly1916@...) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 1, 2011 Report Share Posted October 1, 2011 That's an interesting comment about " perceived " weakness -- that is how I felt, my legs felt so weak and in addition after surgery like " jelly " for a long time. But, whenever I went to my NS he always said my leg strength was " normal " -- my left leg is definately weaker than my good one, but he still says my leg strength is good. He never used that term " perceived weakness " but that makes total sense to me. My left leg is not perceived weakness as when I'm doing physio exercises with single legs there is noticeable difference in strength between the two (and visually they are different). DeeTo: tetheredspinalcord From: Randeejae@... Date: Sat, 1 Oct 2011 07:24:51 -0400 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@... 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@...) > To: _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@...) >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? > > [Non-text portions of this message have been removed] > > > [Non-text portions of this message have been removed] ------------------------------------ NOT MEDICAL ADVICE. We Are Not Doctors. Need help with list?Email Darlene: _darlene_self@..._ (mailto:darlene_self@...) or : _hollygolightly1916@..._ (mailto:hollygolightly1916@...) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2011 Report Share Posted October 2, 2011 I had 2 surgeries for my tethered cord, and I never had any complications from either one. I had relief from both right away, it was like night and day. All my symptoms went away, the leg wweakness, back pain. My neurosurgeon is is in Denver Colorado. He has performed many of these surgeries.  I as well can tell by the way that I feel that I am tethered again. I have researched alot and I have read that you should not wait to have the surgery, because some of the symptoms you may get will not be reversed, I guess you never know. ________________________________ To: tetheredspinalcord Sent: Saturday, October 1, 2011 2:45 PM Subject: Re: how many times  Agree with Jan. I was born with Spina Bifida and began having TC symptoms at age 25. One surgeon wanted to do surgery RIGHT now. I went to another surgeon and he said, " You tell me when the pain is too much and we'll do surgery. "  I had it 4 years later, just shy of my 30th birthday, after my left leg started getting weaker. I ended up in a wheelchair due to complications of recovery but the pain was gone. I was never told TC could come back but I knew what it was when I woke up one morning with pain. Had an MRI but the doctor was reluctant to do surgery since my only symptom was pain. He said I could end up worse that (already) being in a wheelchair. I'm still trying to find a pain med that works (without side effects) but it's better than going through the surgery. I cried the morning the pain started because I remember how horrible the surgery was (for me) the 1st time and I didn't want to go through THAT again. Jodi >Hello Jen, I realy like to respond on this, First of all you're right. But wath option did you have if you wait longer. On the end you need it anyway. But i agree Do not have a surgery to fast . Maby they should first look to new options like corection surgery. But only do the TC if no other option is avaible. It is just to worse for words that they not try other options first. A orthopedic surgian must have a much bigger place it a SB-team. No Doubt about this. They do not know enough about this now. Just my opinion. Jan Willem Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2011 Report Share Posted October 2, 2011 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. ________________________________ To: 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@... 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@...) > To: _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@...) >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 2, 2011 Report Share Posted October 2, 2011 Hello  I do not think that for a tethered cord there is any other options to correct the problem. I know that there is nothing to be done to prevent it from tethering and that the only way to fix it is surgery. Unfortunately they do not know enough to keep the scar tissue from causing much of the re-tethering. ________________________________ To: tetheredspinalcord Sent: Saturday, October 1, 2011 2:11 AM Subject: Re: Re: how many times  Hello Jen, I realy like to respond on this, First of all you're right. But wath option did you have if you wait longer. On the end you need it anyway. But i agree Do not have a surgery to fast . Maby they should first look to new options like corection surgery. But only do the TC if no other option is avaible. It is just to worse for words that they not try other options first. A orthopedic surgian must have a much bigger place it a SB-team. No Doubt about this. They do not know enough about this now. Just my opinion. Jan Willem -----Oorspronkelijk bericht----- From: JBobin Sent: Saturday, October 01, 2011 8:25 AM To: tetheredspinalcord Subject: Re: Re: how many times I was born with SBO, TC, and diastematomyelia (split cord). I found out about the SBO after a car accident when I was 21 and about the others after a MRI when I was 24. The only symptom I had going into my first 2 surgeries was pain in my back, butt & legs. Hence the reason I never would have had the first surgery if I knew then what I know now. Jenn ~~~Sent from my Samsung Infuse 4G~~~ > 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. > > > ________________________________ > > To: 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@... >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 2, 2011 Report Share Posted October 2, 2011 Jbobin  I just wonder why you would not have had the surgery? Both of my surgeries were great and my problems went away the next day. My NS says they don't know enough to keep one from tethering again. I wonder if you are not scared that problems will get worse if you don't have the surgery?? My doctor says if you have symptoms they will only get worse and even then if you wait too long to have surgery then those problems will not reverse. Thats what I am afraid of... ________________________________ To: tetheredspinalcord Sent: Saturday, October 1, 2011 12:25 AM Subject: Re: Re: how many times  I was born with SBO, TC, and diastematomyelia (split cord). I found out about the SBO after a car accident when I was 21 and about the others after a MRI when I was 24. The only symptom I had going into my first 2 surgeries was pain in my back, butt & legs. Hence the reason I never would have had the first surgery if I knew then what I know now. Jenn ~~~Sent from my Samsung Infuse 4G~~~ > 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. > > > ________________________________ > > To: 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@... >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 2, 2011 Report Share Posted October 2, 2011 Hello ,  I have had 2 de-tetherings done with great success right away. I go to Dr.Witt NS in Denver Colorado, and from what I have been told and what I have researched if you are having symptoms you should not wait to have the surgery due to problems you may start to have with bowel and bladder. Then when you have surgery those symptoms will not reverse.  I like you had a list of symptoms that nobody knew what to do with, I was even told it was all in my head, for months this went on until I researched on my own, I am a nurse so I was lucky to have the ability to find the NS I did and he is my hero.  If you need any help of perhaps you would like to get in touch with him please ask, I will get you the information you need. He is very nice and caring.  ________________________________ To: " tetheredspinalcord " <tetheredspinalcord > Sent: Friday, September 30, 2011 10:53 PM Subject: Re: Re: how many times  I've had one. I'm 26 now my first was at 23. I'm desperately trying to find a dr who's willing to do it again. I had a pedi neuro do it in NYC the first time bc he was the only one who believed me and did a MRI to find out why I had all these crazy syptoms and pain after all the years not knowing. Although after I was educated and looked back on my childhood with my parents. Everything made more sense and I suffered due to my idiot pediatricians and all the doctors in my area for that matter. I'm really hoping to Find an adult one soon and that my insurance allows. Im still trying to pay bills from the last one. This message was sent from s' iPhone. Apologies if it does not format corectly. > Thank you for responding to me, I have spina bifida occulta and I know without the surgery there is a chance of irreversible damage. I don't want to take the chance of dealing with those. Thank you once again, and I hope the best for yourr daughter she is very brave. > > ________________________________ > > To: tetheredspinalcord > Sent: Friday, September 30, 2011 7:47 AM > Subject: Re: Re: how many times > > > My daughter has had four. I don't think she would try again but I was > surprised she wanted the fourth. > > In a message dated 9/30/2011 2:15:06 A.M. Central Daylight Time, > micheled723@... writes: > > 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 2, 2011 Report Share Posted October 2, 2011 Hi Jodi and of course everyone in this topic. Like Jodi, I have mostly horrible day's everyday and yes i cry of pain to. Not that i feel myself bad but just because the pain. It is realy strange because i never cry when i am in pain. For me it is walking less than i want. My bladder is worse last months. A strange thing happend last months too. Everytime i need to pee my neck and right arm are hurting more and more. What Jodi said about the scar is correct. I am not a dockter but i ask for a research last week. Just because i am done with it. I want to know what infleuence the cauda equina get on this all. Never read a thing about this. For who not know what it is, it is the area around your tailbone. It seems after surgery something happend with it if you had a surgery around L5 - S1 So i started my own research and found a reseacher of Spina Bifida to set forward this research because ofcourse i do not have the knowledge to do it right. I wil end mij research end of Jan/Febr 2012 and will hand it over to his Neurologistic Center in Amsterdam and also to Univercity of Utrecht in the Netherlands. Ofcourse if i am able to translate it correctly i wil publisch it on my website to. Just read the symtones of this tailbone problem. http://www.coccyx.org/whatisit/symptoms.htm And this: http://www.cure-back-pain.org/cauda-equina.html Why it try to be a smartass ? Because a short feet ore leg < http://www.cure-back-pain.org/short-leg-syndrome.html >has in our case something to do with spina bifida. But symtones like backpain are als related to backpain So tell me do you have pain in you back because your back ore you leg. Ore is your bladder not funtioning because TCS ore damaged Caudal nerves. I just can go on, but it is just complicated. Now these day i think that spinal , hip, feet, ore leg correction can do a lot. Like Chip, Who had i Spine shortning. And also a skyfo/Scoleose correction can solve al lot. If this can make that much space so cutting in the filum terminale is not directly necessary. OK it is just my opinion but personal in beliefe that they are not so smart and based one research of 40 years ago they try to solve for a unknown periodic times bladder and bowel problems. But correction surgery is go further by adults. Note Childeren are stil growing so the need they always need the growth slows down Because there is not so much research in the world about Horse Tail. Lot of symtones are not to indentified and recognized by docktors. At the end I am not a doctor but i try to learn about my own problem. So it keep me buse my whole life i think. Jan Willem -----Oorspronkelijk bericht----- From: J.J. Sent: Saturday, October 01, 2011 10:45 PM To: tetheredspinalcord Subject: Re: how many times Agree with Jan. I was born with Spina Bifida and began having TC symptoms at age 25. One surgeon wanted to do surgery RIGHT now. I went to another surgeon and he said, " You tell me when the pain is too much and we'll do surgery. " I had it 4 years later, just shy of my 30th birthday, after my left leg started getting weaker. I ended up in a wheelchair due to complications of recovery but the pain was gone. I was never told TC could come back but I knew what it was when I woke up one morning with pain. Had an MRI but the doctor was reluctant to do surgery since my only symptom was pain. He said I could end up worse that (already) being in a wheelchair. I'm still trying to find a pain med that works (without side effects) but it's better than going through the surgery. I cried the morning the pain started because I remember how horrible the surgery was (for me) the 1st time and I didn't want to go through THAT again. Jodi >Hello Jen, I realy like to respond on this, First of all you're right. But wath option did you have if you wait longer. On the end you need it anyway. But i agree Do not have a surgery to fast . Maby they should first look to new options like corection surgery. But only do the TC if no other option is avaible. It is just to worse for words that they not try other options first. A orthopedic surgian must have a much bigger place it a SB-team. No Doubt about this. They do not know enough about this now. Just my opinion. Jan Willem Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 2, 2011 Report Share Posted October 2, 2011 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? > > [Non-text portions of this message have been removed] > > > [Non-text portions of this message have been removed] ------------------------------------ NOT MEDICAL ADVICE. We Are Not Doctors. Need help with list?Email Darlene: __darlene_self@..._ (mailto:_darlene_self@...) _ (mailto:_darlene_self@..._ (mailto:darlene_self@...) ) or : __hollygolightly1916@..._ (mailto:_hollygolightly1916@...) _ (mailto:_hollygolightly1916@..._ (mailto:hollygolightly1916@...) ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 3, 2011 Report Share Posted October 3, 2011 Hello  I have had full laminectomies , the last surgery I had the doc had a hard time finding exactly the place I was tethered, but from one year to the next the equipment he had to use changed from a large machine to a hand held device, as he explained to me, much easier for him to use.  The doctor is Dr. Witt. I don't know if you watch baseball, but he did surgery on the Rockies pitcher just this season with great success. The pitcher got hit with a ball so the surgery was on his neck, but that shows how he is respected. He is in Denver Colorado.  Let me know how things are going for you and if I can help in anyway. Michele ________________________________ To: tetheredspinalcord Sent: Sunday, October 2, 2011 5:24 PM Subject: Re: how many times  Hi Michele, I appreciate all the info you are posting. Do you go to Dr. Oro in Colorado? Did you have full open laminectomies or was your surgery done by scope? > > > Thank you for responding to me, I have spina bifida occulta and I know without the surgery there is a chance of irreversible damage. I don't want to take the chance of dealing with those. Thank you once again, and I hope the best for yourr daughter she is very brave. > > > > ________________________________ > > > > To: tetheredspinalcord > > Sent: Friday, September 30, 2011 7:47 AM > > Subject: Re: Re: how many times > > > > > > My daughter has had four. I don't think she would try again but I was > > surprised she wanted the fourth. > > > > In a message dated 9/30/2011 2:15:06 A.M. Central Daylight Time, > > micheled723@... writes: > > > > 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 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  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 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 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...
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