Spinal Cord Injury

My wife has spina bifida and we are considering getting tether cord surgery. when she had surgery in the past she lost a little sensation each time. Can someone who perhaps had this surgery tell me about their experience and the possible riski associated with it.

Well, like many Spina Bifida cases my age (I think, anyway) I underwent tethered cord surgery early on. These days it is usually done not too long after diagnosis/birth to prevent further damage and stress on the nerves, but if she hasn't had it done yet, you might find that she might actually improve her sensation and body control - albeit slightly - by reducing the stretching exercised on the nerves by the tethering.

Well, does she have symptoms? Can she live with the symptoms? Is she in a wheelchair? I have only had one tether cord surgery and that will be my last one. I do not care if I am in a ton of pain. I will never have another one again. I was 12. I went in because of a small bladder problem that they thought could be fixed by the surgery. I was paralyzed from about the hips down. I could move my legs a little. I came out paralyzed from the chest down. The doctor 3 days later after he finally showed his face said "Well, you are lucky you didn't lose you hand function." Huh? My parents and I were never told that paralysis could be a risk. The bladder problem didn't get better and 6 months later I had to have a bladder augmentation which caused a shunt infection and 10 other surgeries. I also now have myocolonic seizures in my stomach, that up until a year ago were undiagnosed. I am now 26. I regained some feeling in my back, but very little. All of those questions I asked are what determines if she needs surgery. If she is in a wheelchair, then there really is no reason to do the surgery, unless her symptoms are bad. Hope I helped and didn't scare you too much.

 Summer

Oh forgot to mention. It doesn't actually make the tether cord go away. It is meant to stop the symptoms. She will always have a tether cord if she has myelo.

 Summer

Summer24:

Oh forgot to mention. It doesn't actually make the tether cord go away. It is meant to stop the symptoms. She will always have a tether cord if she has myelo.

 Summer

 

Umh, what do you mean by that? While it's true that there is no certainty of improved function or sensation after surgery, once the scar tissue is removed and the cord detached from it, the cord is by definition untethered.

I'm sorry to hear what happened to you. An untethering surgery - like all surgeries - has risks associated to it. We're talking about very fragile fibers here and surgeons - like all other humans on the planet - can make mistakes. If the spinal cord is further damaged during surgery, then loss of function rather than restoration might occurr, and I agree that patients should always be informed about the possible risks. That said, an untethering surgery can in principle - and does in many, if not most, cases - improve things.

 I've had three untetherings, each one providing slightly less relief.  The first one lasted a few years before the new scar tissue buildup made symptoms unbearable.  The second lasted about a year, and the last one maybe 4-6 months.  After that, my neuro refused to do another surgery, since the risk of further damage increases with each surgery.  I think the decision whether or not to do another surgery largely depends on what function one has, the number of previous untetherings, and one's ability to endure the symptoms experienced.  In my situation, although I would like to have another one, I've learned to live with my symptoms.  Also, since my SB (L5-S1 myelo) did not paralyze me, it would probably be best for me not to undergo another untethering.  The risk of extra damage is just too high.

Wishmaster:

Summer24:

Oh forgot to mention. It doesn't actually make the tether cord go away. It is meant to stop the symptoms. She will always have a tether cord if she has myelo.

 Summer

 

Umh, what do you mean by that? While it's true that there is no certainty of improved function or sensation after surgery, once the scar tissue is removed and the cord detached from it, the cord is by definition untethered.

I'm sorry to hear what happened to you. An untethering surgery - like all surgeries - has risks associated to it. We're talking about very fragile fibers here and surgeons - like all other humans on the planet - can make mistakes. If the spinal cord is further damaged during surgery, then loss of function rather than restoration might occurr, and I agree that patients should always be informed about the possible risks. That said, an untethering surgery can in principle - and does in many, if not most, cases - improve things.

A person with myelomeningocele WILL ALWAYS have a tether cord. It may fix it for a while, but it will not stay untethered. That is why once you have one tether cord surgery, you usually will have multiple in your life. I have known several people that have had at least 3. Once surgery is performed in an area scar tissue will grow, which is what causes the tether cord to begin with. I also have seen tether cord do a lot more harm in many people then good.

Summer

 I have to disagree. I've only had one untethering as a kid and that did it. I was too young to remember whether there was any improvement in sensation or function, but no further surgery was required in order to untether the spinal cord and remove the stress on it. Statistically only a minority of myelomeningocele cases have to undergo multiple untetherings. Where did you read a tethering is bound to reform over time?