Guest guest Posted October 3, 2011 Report Share Posted October 3, 2011 Hi -- the filum does not necessarily move up when it is cut -- especially if it's been low lying a long time. But the hope is that the cord is " free " . My neurosurgeon said it actually could be detrimental if it moved up too high suddenly after surgery as all nerves would be stressed and possibly damaged as they have been in a certain position for so long (for me, 40 years). My cord is still very low lying after this surgery -- and my nerves did go into major shock after surgery, even though the cord didn't move that much. I was much worse off for over a year, but in the end, have no aching in my legs, but still low back pain with activity. Dee To: tetheredspinalcord From: stvtm@... Date: Mon, 3 Oct 2011 16:24:38 +0000 Subject: Re: Losing weight (Randee) and pain meds Hi Michele, Sorry to hear about your continued problems. Do you know what level your spinal cord was at after your first surgery and what type of tether you first had? Was it the thick filum type or something else? If the first surgery was cutting the filum, I thought the spinal cord jumps up with this, so it would be odd that you were tethered really low in the sacral area the second time. Hope your MRI gives you definite answers. > > Good Morning >  > I have found such a nice bond with you, I have never been a part of this before and I have enjoyed our contact. >  > I stayed up too late last night online and again I found even for adults the surgery should not be put off. I just scheduled my MRI for this Wed. I have been going on how my body feels. >  > I also have trouble with constipation, but when I have had both of my detetherings that problem went away and of course it has come back the same as your daughter. It has been exactly 1 year since my last surgery. >  > I also have a symptom that I have never heard anyone else say they have had, but when I bend at the waist I get floaters in my eyes, my NS cannot explain this, but we know it is somehow connected because when I am detethered that also goes away. I also have a pain in my upper back under my shoulder blade area, that also goes away after surgery. All the symptoms I have go away. Then as time passes they come back again. My surgeon says that my surgeries are successful, but he cannot explain what causes the tether to come back. If the surgeries did not help then he might not want to do the surgery, but because I feel better he thinks we should proceed before one time the symptoms of incontinence or loss of bladder start, then he says even after surgery they cannot be reversed. > My leg weakness also does get better, but gradually along with the constipation and back pain it gets worse. >  > After my first surgery my NS said that my spine was so tight the it was as if you would pull on a rubberband until it is ready to break, he could tap my spine with his finger and there was no give at all. The 2nd time he had to search for the tethering. I was tethered into the sacrum area as low as it could possibly be. The MRI scan cannot even get that far down to see. I had 2 MRI's before my last surgery one done on my back that showed I was tethered. One done laying on my stomach that showed I was not tethered so he asked me what I wanted to do wait? repeat scans at a later date? > I told him if MRI'S did not exist that I felt I was tethered, I went into surgery the next day. > As I have said I have read so much that say don't wait. My NS said he cannot tell me when the symptoms will come back worse so I don't want to be in a diapor at 40 years old or even in a wheelchair. Thank you for always getting back to me the support you have given me has helped me, just knowing I have someone out there with the same issues, I hope I bring the same to you. > > > ________________________________ > > To: tetheredspinalcord > Sent: Monday, October 3, 2011 6:08 AM > Subject: Re: Losing weight (Randee) and pain meds > > >  > Hi Michele, > My heart hurts for you as I know how difficult a decision this would be. > I think the first surgery is clearly indicated in the literature as the way > to go for infants and young children. It seems a bit hazier to me for > adults. With multiple surgeries, so I have been told, the " risk benefit " > ratio shifts is the way our last neurosurgeon explained it. He did however > want to proceed with the last surgery (#4) when my daughter had a couple of > episodes of urinary incontinence and increasing problems with constipation. > It didn't help the pain except for 4 months or so but it did help the > weakness and numbness and there have been no further episodes to my knowledge of > urinary incontinence but the constipation has continued to slowly become > more of an issue. Your NSG wants to operate and you trust him..or was there > a problem with him doing this surgery for some reason. The other option > is to get an opinion from a couple of other well known folks in the field > though you would have to travel .. some will consult via mail. Please feel > free to use my personal email as well which is _randeejae@..._ > (mailto:randeejae@...) ... I believe Dr. Fuchs, at Duke, will consult via > mail. He is extremely well thought of and responded to an email I sent some > years ago that he would be glad to see though we didn't follow up on > that. Dr. Frim in Chicago is also mentioned repeatedly as an expert and > there are two California MDs whose names come up again and again though their > names escape me. Randee > > > In a message dated 10/2/2011 10:10:01 P.M. Central Daylight Time, > micheled723@... writes: > > Randee, > > I did not know that about ultram we still use it here, my daughter works > in a hospital that houses inmates from prison and that is the only pain med > the doctors can use. > > I do understand how tricky meds are.........I however can not understand > why so much advice I have read from people on line that they have been told > to wait to have surgery, I have been online all evening researching > tethered cords and I have read if you have symptoms then have surgery right away, > but I have heard from some that they were told to wait. > > I am so confused..... do you wait or not? My NS has never wanted me to > wait if I was having symptoms but yet I read so many people are told > to............ > > If you ever need any help finding a doctor in my town I can help. My > doctor also who I worked for before my last surgery for 10 years can not > believe how much trouble people are having getting proper pain attention. > > take care > Michele > > ________________________________ > From: " _Randeejae@..._ (mailto:Randeejae@...) " > <_Randeejae@..._ (mailto:Randeejae@...) > > To: _tetheredspinalcord _ > (mailto:tetheredspinalcord ) > Sent: Sunday, October 2, 2011 7:19 PM > Subject: Re: Losing weight (Randee) and pain meds > > Thanks so much, Michele! I remember that Ultram was discontinued from use > at the pain clinic at which I worked in Saint Louis when it was found to > have some addictive qualities though, believe me, if my girl gets to a > point > that she needs narcotics, I will fly all over the country to get her > treatment! She also takes antidepressants which make prescribing certain > meds a > bit trickier I believe. It is a pleasure getting to know you Randee > > In a message dated 10/2/2011 7:19:52 P.M. Central Daylight Time, > _micheled723@..._ (mailto:micheled723@...) writes: > > Wow Randee !!!! > > I am in shock about the pain med problem. Ultram is a pain med that is > non narcotic and is used in the prison system due to drug addiction > problems > there. We also give it to elderly patients that have not ever been on pain > meds before and can not tolerate much. > > I know it takes time to find the right med that will give relief, it is > hard when we have so many different symptoms to try to help. I hope I you > will find the best med for your daughter. I am so upset to learn that in > different parts of this country patients are not getting the pain relief > that > they deserve. > > I wish you the best and I look forward to hearing from you. > Michele > > ________________________________ > From: " __Randeejae@..._ (mailto:_Randeejae@...) _ > (mailto:_Randeejae@..._ (mailto:Randeejae@...) ) " > <__Randeejae@..._ (mailto:_Randeejae@...) _ > (mailto:_Randeejae@..._ (mailto:Randeejae@...) ) > > To: __tetheredspinalcord _ > (mailto:_tetheredspinalcord ) _ > (mailto:_tetheredspinalcord _ > (mailto:tetheredspinalcord ) ) > Sent: Sunday, October 2, 2011 1:45 PM > Subject: Re: Losing weight (Randy) > > How interesting medicine is! I have never known an internist that gives > narcotics long term I don't think my daughter is needing that quite yet > but it is definitely difficult to get. I worked at a multi-disciplinary > pain center in Saint Louis in which the three part time psychiatrists > prescribed narcotics. It closed :/ The multi-disciplinary pain clinic I > worked > at in Kansas City did not prescribe narcotics. For the most part,other > places that call themselves Pain Clinics are often just steroid etc. > injections...as are the ones here in Columbia, MO (home of MU). It > certainly could > be that being a nurse gives the md's more confidence that you will not > abuse your medicines. Thanks for your prayers, Michele..and back at ya! > Randee > > In a message dated 10/2/2011 1:18:22 P.M. Central Daylight Time, > __micheled723@..._ (mailto:_micheled723@...) _ > (mailto:_micheled723@..._ (mailto:micheled723@...) ) writes: > > Hello Randee > > I know how you feel my daughter is type 1 diabetic and I wish that I > could be the one with it instead of her. It is always so hard to watch > your > child suffer. I hope that you find a doctor who will give her a med to > help > with the pain. I am a nurse and I work in an office with 6 doctors all > internal med and I have never seen any of them not give pain med to help a > patient. > > I do understand that age plays a role in it, afraid of addiction, but this > pain will follow us for the rest of our lives and it is not fair no matter > what the age not to give someone relief to have some quality of life. > > I live in Pueblo Colorado and I can't believe how many people are having > trouble getting pain control. > Maybe because I am a nurse and I work (I have not worked since my last > surgery 1 year ago) in the field so it does give me an advantage. > > I wish you the best, and I pray for your daughter. Living with a tethered > cord is not easy and knowing the outcome can be so scary. I have enjoyed > communicating with you and look forward to helping each other through this > time. > > What area are you from? I ask because it seems like so many suffer with > getting pain control. > Please stay in touch. > > ________________________________ > From: " ___Randeejae@..._ (mailto:__Randeejae@...) _ > (mailto:__Randeejae@..._ (mailto:_Randeejae@...) ) _ > (mailto:__Randeejae@..._ (mailto:_Randeejae@...) _ > (mailto:_Randeejae@..._ (mailto:Randeejae@...) ) ) " > <___Randeejae@..._ (mailto:__Randeejae@...) _ > (mailto:__Randeejae@..._ (mailto:_Randeejae@...) ) _ > (mailto:__Randeejae@..._ (mailto:_Randeejae@...) _ > (mailto:_Randeejae@..._ (mailto:Randeejae@...) ) ) > > To: ___tetheredspinalcord _ > (mailto:__tetheredspinalcord ) _ > (mailto:__tetheredspinalcord _ > (mailto:_tetheredspinalcord ) ) _ > (mailto:__tetheredspinalcord _ > (mailto:_tetheredspinalcord ) _ > (mailto:_tetheredspinalcord _ > (mailto:tetheredspinalcord ) ) ) > Sent: Sunday, October 2, 2011 10:04 AM > Subject: Re: Losing weight (Randy) > > Thanks, Michele, > I am a psychologist who has worked in a few different pain clinics. It is > indeed rare to find someone who will prescribe narcotics. We will > continue the search for the best forms of pain relief. It is my daughter, > 21 yo, > not me with the tethered cord..I sure have prayed hard to have it put into > me!! :/ > Randee > > In a message dated 10/2/2011 9:49:02 A.M. Central Daylight Time, > ___micheled723@..._ (mailto:__micheled723@...) _ > (mailto:__micheled723@..._ (mailto:_micheled723@...) ) _ > (mailto:__micheled723@..._ (mailto:_micheled723@...) _ > (mailto:_micheled723@..._ (mailto:micheled723@...) ) ) writes: > > Hello Randee > > I am so confused as to why you can not get anything for pain besides > neurontin, I was never even given that as an option. That may help with > neuropathy, but not for the back pain. I see an internal med doctor and I > am > lucky because I am a nurse so I have more say in what works for me. > > I do see this alot with people trying to explain to the doctors how they > feel, due to my position in my job, I have been able to get more people to > listen to me. > > Lyrica from what I have seen at work is a very hard med to take, not many > people who can handle the side effects. Neurontin does cause weight gain. > I would hope that you can get in with an internal med doctor not family > practice and find one who will listen to you and try to help you get > relief. > > I wish only the best for your daughter, as I do with all of us who are > suffering with this terrible problem, I would have her suggest a small > dose > of a time release pain med and try to get off the neurontin due to the > side > effects it is causing her. I know doctors are worried about younger people > becoming addicted to pain meds but in our condition what choice do we > have. Sometimes you can also find a pain doctor and that is just what he > does > but prescribe med to help people, they will make you sign a pain med > contract to insure that the patient is using her meds as prescribed. Don't > give > up hope and don't settle for what you are given if it is not helping or > causing more problems remember the doctors are working for us and are > there to > help. Please let me know how this goes for you. > > ________________________________ > From: Jan Willem Weijers <____weijers.jw@..._ > (mailto:___weijers.jw@...) _ > (mailto:___weijers.jw@..._ (mailto:__weijers.jw@...) ) _ > (mailto:___weijers.jw@..._ (mailto:__weijers.jw@...) _ > (mailto:__weijers.jw@..._ (mailto:_weijers.jw@...) ) ) _ > (mailto:___weijers.jw@..._ (mailto:__weijers.jw@...) _ > (mailto:__weijers.jw@..._ (mailto:_weijers.jw@...) ) _ > (mailto:__weijers.jw@..._ (mailto:_weijers.jw@...) _ > (mailto:_weijers.jw@..._ (mailto:weijers.jw@...) ) ) ) > > To: ____tetheredspinalcord _ > (mailto:___tetheredspinalcord ) _ > (mailto:___tetheredspinalcord _ > (mailto:__tetheredspinalcord ) ) _ > (mailto:___tetheredspinalcord _ > (mailto:__tetheredspinalcord ) _ > (mailto:__tetheredspinalcord _ > (mailto:_tetheredspinalcord ) ) ) _ > (mailto:___tetheredspinalcord _ > (mailto:__tetheredspinalcord ) _ > (mailto:__tetheredspinalcord _ > (mailto:_tetheredspinalcord ) ) _ > (mailto:__tetheredspinalcord _ > (mailto:_tetheredspinalcord ) _ > (mailto:_tetheredspinalcord _ > (mailto:tetheredspinalcord ) ) ) ) > Sent: Sunday, October 2, 2011 8:22 AM > Subject: Losing weight (Randy) > > Hi Randy, > > That some i had to, > > She need to change type off food smaller proportion. > What helped for me is do it realy slow. > 3 days a week meat (so no fast-food anymore.) > a lot fruit and vegetables. Never eat to much in the begin. > Just take cup of tea in stead off limonade (like coke and 7up) ore other > bubble drink. > cordial is realy a good option, and a good drink for us is something like > strawberry. > And if possible try to exersise, by something like swimming ore if you > able > at least someting where you move you body. > > That made Lyrica a much better medicin then Neurotin for me. > After 5 year i can't eat much more. > > Forget pills and other ways becouse they help on short term. but then you > felt down. > > This take many years but help you whole life. > > Don't go to that weighing scale every week just once a month. > > Good luck for you daughter Randy. > > It helps me a lot. In 5 years i lost 30 pounds. > > Kindly regards. > Jan Willem > > -----Oorspronkelijk bericht----- > From: ____Randeejae@..._ (mailto:___Randeejae@...) _ > (mailto:___Randeejae@..._ (mailto:__Randeejae@...) ) _ > (mailto:___Randeejae@..._ (mailto:__Randeejae@...) _ > (mailto:__Randeejae@..._ (mailto:_Randeejae@...) ) ) _ > (mailto:___Randeejae@..._ (mailto:__Randeejae@...) _ > (mailto:__Randeejae@..._ (mailto:_Randeejae@...) ) _ > (mailto:__Randeejae@..._ (mailto:_Randeejae@...) _ > (mailto:_Randeejae@..._ (mailto:Randeejae@...) ) ) ) > Sent: Sunday, October 02, 2011 3:23 PM > To: ____tetheredspinalcord _ > (mailto:___tetheredspinalcord ) _ > (mailto:___tetheredspinalcord _ > (mailto:__tetheredspinalcord ) ) _ > (mailto:___tetheredspinalcord _ > (mailto:__tetheredspinalcord ) _ > (mailto:__tetheredspinalcord _ > (mailto:_tetheredspinalcord ) ) ) _ > (mailto:___tetheredspinalcord _ > (mailto:__tetheredspinalcord ) _ > (mailto:__tetheredspinalcord _ > (mailto:_tetheredspinalcord ) ) _ > (mailto:__tetheredspinalcord _ > (mailto:_tetheredspinalcord ) _ > (mailto:_tetheredspinalcord _ > (mailto:tetheredspinalcord ) ) ) ) > Subject: Re: Re: how many times > > 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. Randee > > Quote Link to comment Share on other sites More sharing options...
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