SBO and detethering.......

[n3rdchik]

So for those with SBO type diagnosises (lipomeningocele etc). How many of you or your children retethered? How long after your surgery?

[sbmama]

She was detethered at 3 months old and started having definite symptoms again around when she was 19 months old. She's scheduled for surgery in November, and her surgeries will be 20 months apart. Her symptoms have been getting progressively worse since the summer. The first change was her constipation got very severe.

[Lifeisgood]

I was detethered at 9 and then by my teenage years they suspected I was tethered again. I have not had surgery for retethering yet. For about 15 years it was stable, but then over the past 18 months I have had progression in my symptoms. The surgeons all feels that right now the risks of having another surgery outweigh the potential benefits, so I am deferring surgery. So for me, none of the poll options fit. I am retethered, but surgery is not advised (different from not being needed).

[LisaJoy]

I've had three detetherings, but each time for a different lesion. Currently retethered and deferring surgery (needed but risks outweigh potential benefits).

[n3rdchik]

Stupid question - what are the risks of a second detethering? Or what makes it so much more intense than a first surgery?

Lifeisgood - sorry about the poll choices :(. It just seems like a ton of peeps on the board are having tethering issues.

[kidsrustx]

Seth had his first surgery 2 years ago when he was almost 13. He has been retethered for several months. I'm suspecting he might need surgery since his urologic status has deteriorated so much.

Second detethers are risky because they have to deal with the scar tissue from the first surgery and because they normally have to get more aggressive to try to avoid a subsequent retether.

[Lifeisgood]

No worries N3rdchik! It is totally okay! I just wanted to clarify. :)

Nicole is right on about why it is risky. My neurosurgeon also said that it is really hard to distinguish between the scar tissue, nerve tissue and the lipoma once a retethering has occured. I am not sure if there are differences in risks between kids and adults. I am starting to get the sense (through reading this board) that neurosurgeons are more aggressive with treating kids and more conservative for treating adults. Maybe because it is harder for adults to heal? Or perhaps because we have stopped growing (height wise, not wide wise ;) ) and we are less likely to have the marked increase in symptoms that kids are? I am not quite sure.