Guest guest Posted July 3, 2006 Report Share Posted July 3, 2006 blessedwithmojo said the following on 7/3/2006 10:36 AM: > I'm still trying to figure it all out, but my biggest question / fear > is - is detethering worth it ? I took Dr B's words to be that he could > dethether me and end my low back pain and all my waist down symptoms. > > By reading these posts I'm not so sure.( Don't get me wrong guys, I LOVE > this sites honesty and forthcoming, wouldn't be here if it wasn't that > way, please don't ever change, lol ) I understand scar tissure growing > back and the need for more detethering down the road, but is it just me > or does it seem that its a bit more complicated then just scar tissue > regrowth. > > Is it also that MRI's only show so much and once a surgeon gets in there > they find more wrong so more work is done possibly causing more > recovery, ect ? > > Still having a hard time getting what I want out of my head onto the > screen so hopefully my questions clear. Do you think detethering has > been worth doing ? Should someone wait as long as possible before doing > it ? Or go as soon as possible ? Looking for opinions from those who > have been there before me. Thanks everyone :-). > > The primary purpose of surgery is to prevent continuing deterioration. Continuing deterioration may mean totally paralyzed below the waist. I said MAY, not WILL.I waited 18 months, almost a point beyond no return. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 Hi there You are right to doubt the use of going through a difficult surgery if we are all complaining about our pain and results. Of course, you have asked the million dollar question, is it worth it? Each case is different, that's the best answer I can give you. In my case, I have no doubt that I would be unable to walk more than a few minutes at this point if I hadn't had the surgery b/c I was deteriorating rapidly and my ability to function had gone downhill miserably. Also, in my case, the surgery was felt to be a potential source of improvement given the location of the problem and the duration of my symptoms. I had tight fillum terminale, surgery was section of the fillum with a S1 laminectomy/laminoplasty (cut and patch up the bone at S1). I still have a long way to go but I've improved a lot. Things to take in account would be the type of tether and the duration and severity of symptoms, the surgeon's experience in your particular situation and his/hers best estimate of your chances of improvement. So if you look at the extremes, people with no symptoms at all and the people that have had severe limitations for many years, you might think that in those groups it is not clear IN ADULTS whether surgery would be helpful. Most of us are somewhere in between those extremes and it is hard to interpret the data available since it is limited, the numbers of cases reported are limited and not always classified by type of tether. Dr. Yamada's work divides adult tsc in 2 types, with the groups without open spine defects having better results (I.e. without meningocele). The more complex the case (I.e. if you have several problems in your spinal cord), the harder the surgery, the riskier, etc. SO, basically, you have to take in account your doctor's expertise and opinion and get more than one opinion if needed and consider mainly if you are losing function. As many have said here, pain improvement is not always the case for everyone. The other crucial point to take in account is that in this group you are probably hearing (no offense to anyone) from people that still have symptoms, since those that had excellent results with no residual problems might have moved on and are no longer communicating actively with the group. Good luck! Keep us posted Is detethering worth it ? I'm still trying to figure it all out, but my biggest question / fear is - is detethering worth it ? I took Dr B's words to be that he could dethether me and end my low back pain and all my waist down symptoms. By reading these posts I'm not so sure.( Don't get me wrong guys, I LOVE this sites honesty and forthcoming, wouldn't be here if it wasn't that way, please don't ever change, lol ) I understand scar tissure growing back and the need for more detethering down the road, but is it just me or does it seem that its a bit more complicated then just scar tissue regrowth. Is it also that MRI's only show so much and once a surgeon gets in there they find more wrong so more work is done possibly causing more recovery, ect ? Still having a hard time getting what I want out of my head onto the screen so hopefully my questions clear. Do you think detethering has been worth doing ? Should someone wait as long as possible before doing it ? Or go as soon as possible ? Looking for opinions from those who have been there before me. Thanks everyone :-). Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 Hi, I would say that the detethering was a wonderful thing for me. It gave me so many things which I had never been able to feel or do before in my life; not only that, the neurosurgeon told me that they got there just in time, another six months and my spinal cord, being so stretched, would have snapped, causing my death. Consequently, I now say that I have two birthdays, the second one being the anniversary of my operation 15 years ago, (I'm a lot older than that by my real birthday). You need to get the full opinions of your neurosurgeon to be able to decide whether or not to have the operation, as each case is different, depending on the particular anatomy. I was told that I did have a choice whether or not to have it done, without the other information, but I am very glad that I did have it, and I was so disabled then that it was done almost straightaway. Best wishes to all, , Lincoln, UK Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 4, 2006 Report Share Posted July 4, 2006 ia What a wonderful post, which explains things so well. Mojo: I had a similar tether and surgery to ia - thickened filum terminale with arachnoid adhesions. My scar is L5-S2 but I didn't have a laminoplasty (repair of lamia). Had it 5 years ago at the end of this month I don't regret having the surgery one little bit. I was deteriorating rapidly, the pain was excruciating, and it was severely limiting my activities and work etc. Now I am 98% recovered from the detethering. OK, I have new and extra problems such as the CRPS/EM, facet joint erosion and chronic pain BUT this type of pain in the joints is easier to cope with than the nerve pain Best wishes Nina Bristol, UK -- > Hi there > You are right to doubt the use of going through a difficult surgery if we > are all complaining about our pain and results. Of course, you have asked > the million dollar question, is it worth it? Each case is different, > that's the best answer I can give you. > In my case, I have no doubt that I would be unable to walk more than a > few minutes at this point if I hadn't had the surgery b/c I was > deteriorating rapidly and my ability to function had gone downhill > miserably. Also, in my case, the surgery was felt to be a potential > source of improvement given the location of the problem and the duration > of my symptoms. I had tight fillum terminale, surgery was section of the > fillum with a S1 laminectomy/laminoplasty (cut and patch up the bone at > S1). I still have a long way to go but I've improved a lot. Things to > take in account would be the type of tether and the duration and severity > of symptoms, the surgeon's experience in your particular situation and > his/hers best estimate of your chances of improvement. So if you look at > the extremes, people with no symptoms at all and the people that have had > severe limitations for many years, you might think that in those groups > it is not clear IN ADULTS whether surgery would be helpful. Most of us > are somewhere in between those extremes and it is hard to interpret the > data available since it is limited, the numbers of cases reported are > limited and not always classified by type of tether. Dr. Yamada's work > divides adult tsc in 2 types, with the groups without open spine defects > having better results (I.e. without meningocele). The more complex the > case (I.e. if you have several problems in your spinal cord), the harder > the surgery, the riskier, etc. SO, basically, you have to take in account > your doctor's expertise and opinion and get more than one opinion if > needed and consider mainly if you are losing function. As many have said > here, pain improvement is not always the case for everyone. The other > crucial point to take in account is that in this group you are probably > hearing (no offense to anyone) from people that still have symptoms, > since those that had excellent results with no residual problems might > have moved on and are no longer communicating actively with the group. > Good luck! > Keep us posted > > Is detethering worth it ? > > > > I'm still trying to figure it all out, but my biggest question / fear > is - is detethering worth it ? I took Dr B's words to be that he could > dethether me and end my low back pain and all my waist down symptoms. > > By reading these posts I'm not so sure.( Don't get me wrong guys, I LOVE > this sites honesty and forthcoming, wouldn't be here if it wasn't that > way, please don't ever change, lol ) I understand scar tissure growing > back and the need for more detethering down the road, but is it just me > or does it seem that its a bit more complicated then just scar tissue > regrowth. > > Is it also that MRI's only show so much and once a surgeon gets in there > they find more wrong so more work is done possibly causing more > recovery, ect ? > > Still having a hard time getting what I want out of my head onto the > screen so hopefully my questions clear. Do you think detethering has > been worth doing ? Should someone wait as long as possible before doing > it ? Or go as soon as possible ? Looking for opinions from those who > have been there before me. Thanks everyone :-). > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2006 Report Share Posted July 10, 2006 Hi I'd like to echo your sentiments and reason for your surgery. This too was my one and only reason for my first untethering as I had no pain at all. The other surgeries were also to halt the neuro decline that was happening and if it also helped my pain, then that was a bonus I would take. However, again, any nsg worth his weight will tell you the ultimate goal is to stop further deterioration. I don't know many nsg's that will untether just for pain only because it's such a iffy outcome to suggest would occur. However, again though, in saying the above, we all have to decide what our own standard of quality of life is like. I had two of my surgeries with the ultimate goals of being able to live again as I once had. I never admitted this to my nsg ,but I hoped against hope that a miracle would happen. It didn't, but I also prepared myself for that. Ultimately, we can NEVER say you shouldn't have the surgery for this or that reason and only have it for this reason...only a person's nsg and neuro and doctors can and should say this, never, ever a member...ever. We don't live in that person's body or mind and that is a heavy advice or rather demand to give to another human. Kathy Re: Is detethering worth it ? Hi All, I have to add just one thing to this - I was surprised to read that because some of us have only been a few months out of surgery and in the long term may regret it as pain may return due to retethering that I may be walking on clouds or such. . . . I didn't just have detethering to reduce my pain level and be able to work and spend time w/my family outside of my bed but rather to help prevent further nerve damage that was ocurring and would become permanent had I not taken action. I guess we have to decide as if it's the same as something wrong w/your heart or other life-sustaining organ. . . your spinal cord is so important to your life it amazes me that people seem to think that one is right or wrong or should be regrettful in trying to fix the problem. My advice is that it's a personal decision but find the best doctor to perform it on you through your own research and talking to others. That's just my 2 cents worth - even after a bad pain Sunday. Wyoming Decompressed May 02 Detethered Apr 06 stella o wrote: All of it is all true, which is confusing because we have a rare disorder with a wildly varied outcome. This will give you a lot of different feedback when you look to the one in one thousand, which is us at large then the one in 5 who have a symptomatic retether following that. That's not even considering the many variations of tethered cord and how/why it's tethered. I agonized over the decision. The only thing i can say about it overall is, if you choose to go forward with a first detether, find the best doctor. That's because the second or third detether is much more complicated. This is a huge faith to place in a human being so I just researched it til I was blue in the face then went for it. I asked a lot here and then asked a lot from anyone else who would know. I read medical papers and asked medical evaluators even. Don't be afraid to insist on what you need. That's the biggest thing overall I think in any healthcare situation. I have similar pain and similar symptoms but unlike Nina, have less time to account for since I had surgery 3 months ago. Therefore I find comfort in hearing that she doesn't regret it. She has more history. It's so far a net positive and no regrets for having the surgery. So far, I'm better off. I can do more after 3 months than I could before. I cant feel my foot and I have pain but today I played tennis. I didn't dodge for tough shots but I was able to get some footwork that I couldn't before. I was so happy I almost cried. I can do a lot more than before. Perhaps we should get together and write a casebook for everyone. Nina's diary was the only reference I had for a long term adult case story which was immensely helpful, as was everyone's individual advice. Why don't we do this on a larger scale? Sincerely, --- " AB Bunton, Electrical & Electronic Engineering " wrote: > I feel I must reply to the " sum things up " in this > email and say that this > summing up is very stark and in most cases, not the > right way to > contemplate detethering surgery. > > The argument not to have the detethering due to pain > is, I feel, an > erroneous one. Pain can compromise one's life > activities, enjoyment, > interaction at work, home, keeping fit etc etc. Pain > is also an indication > that something is wrong, and that some damage is > being done to the body. > > I had my detethering when my pain was approximately > 7.5/10 every day. It > progressed some days to 9.5/10 and other days > regressed to approx 2/10. > Despite the good days, my neurosurgeon said I *had* > to have the detethering > to save my good nerves and function. Any reduction > in pain would be a bonus > - and indeed that is how it turned out. > > Being cynical, if anyone can live with pain, and > turn down the opportunity > to have a reduction in that pain, then they are > possibly turning down > prospects of a better outcome in that surgery. > > BTW: I had my detethering 5 years ago on 31st July. > I have ended up with > erythromelalgia, complex regional pain syndrome and > facet joint erosion in > my back - but I would not have missed having the > surgery. It gave me my > life back, albeit with some restrictions, but by now > I would have been in a > wheelchair permanently, would have lost control of > bowel and bladder, and > would have been thoroughly miserable. > > The decision is of course very individualised, but > overall, having a > detethering is worth it. It is not a good thing to > say " what if I > retether " . No-one has a crystal ball to see 5 years > down the line. " What if > I *don't* retether " - that's got to be a good thing > > Regards > > Nina > Bristol, UK > > > --On 07 July 2006 11:33 -0700 christy hylton > wrote: > > > You have most definitely raised a good topic!! In > my experiences and > > opinions..I would have to say that surgery is a > good sollution depending > > on your symptoms and reasons for having the > surgery. Once you have the > > surgey...You are more than likely going to > retether at some point again > > in your life. For some it takes months for others > it can take years. So > > I feel like you should wait until you are really > loosing function of your > > legs. By this I mean that walking is becoming > almost impossible. I only > > mean this for ADULTS. In Children I feel like > they should have it done > > as soon as possible to prevent further nerve > damage. > > My first detethering went very well, and I was > glad at the time that I > > had it done. But all my symptoms came back > bacause I retethered due to > > scar tissue. So I had a second surgery. > Unfortunately for me, things > > were worse after the surgery, compared to what I > was like before I had it > > done. So I do regret the second surgery. If I > had it to do all over > > again.....I would have waited before I had the > very first surgery. I > > thought that my symptoms at the time were pretty > bad before the > > first....but knowing what I know now....they > werent sooo bad. I could > > have lived with them and waited till they got > worse. So in my opinon I > > am totally against multiple surgeries, unless it > is life or death > > situations. > > To Sum things up....If your having the surgery > because of... > > 1. Pain...DONT DO IT > > 2. Bladder or Bowel control...DONT DO IT > > 3. you can barely walk...THEN DO IT!! > > > > This is only my opinion though..and I did notice > reading the other > > replies..the ones that think surgery is worth > it..was the ones that > > recently have had it done..I cant help but wonder > in a few years will > > they think the same thing. So that is something > else you might want to > > take into consideration. > > Love and Prayers to All, > > Christy > > > > blessedwithmojo wrote: > > > > I'm still trying to figure it all out, but my > biggest question / fear > > is - is detethering worth it ? I took Dr B's words > to be that he could > > dethether me and end my low back pain and all my > waist down symptoms. > > > > By reading these posts I'm not so sure.( Don't get > me wrong guys, I LOVE > > this sites honesty and forthcoming, wouldn't be > here if it wasn't that > > way, please don't ever change, lol ) I understand > scar tissure growing > > back and the need for more detethering down the > road, but is it just me > > or does it seem that its a bit more complicated > then just scar tissue > > regrowth. > > > > Is it also that MRI's only show so much and once a > surgeon gets in there > > they find more wrong so more work is done possibly > causing more > > recovery, ect ? > > > > Still having a hard time getting what I want out > of my head onto the > > screen so hopefully my questions clear. Do you > think detethering has > > been worth doing ? Should someone wait as long as > possible before doing > > it ? Or go as soon as possible ? Looking for > opinions from those who > > have been there before me. Thanks everyone :-). > > > > > > > > > > > > > > --------------------------------- > > Yahoo! Music Unlimited - Access over 1 million > songs.Try it free. > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > Not Medical Advice. We Are Not Doctors. > > Need help with the list? Email > > kathy@...,michelle@..., > rick@... > > Quote Link to comment Share on other sites More sharing options...
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