Tethered cord release surgery

[mrsbuboltz]

My son, whom is 13 years of age, was born with spina bifida myelomeningocele and has done VERY well thorughout his life.  In fact doctors have said they have no medical explanation for his bodies capabilities.  He took his first steps at 2.5 without any assistive devices, was continent of urine, does have unshunted hydrocephalus, has full sensation all the way to his toes (can curl them up and down), does have some constipation problems that he is on a program for.  So anyways starting in May 2010 he became incontienent and by September we had to start cathing him.  This was a very difficult time for us.  It was determined that his tethered spinal cord was the issue and surgery was done on 9/27/10.  Since surgery (and I know it's still very early) he has not voided on his own once.  He used to leak or be incontinent between cathing if his urine volume was very high.  Now we are cathing volumes that are 800ml at a time (and we cath every 4hrs) with no leaking, incontinence, or urge to void.  We have also noticed that suppositories no longer effect him...his body doens't react to them at all.  Now I realize that it is early and that maybe his body is in shock? but I was wondering if anyone else had a similiar experience?  I am afraid that the surgery may have made things worse rather then better which is why we had the surgery done.  I have also noticed that at night his legs twitch which they didn't before the surgery either.

[selmaS]

Having the surgery to de-tether can mean more surgery down the road as it can re-tether from scar tissue.

Mrsbuboltz I hope u join u sin the chiari forum.....and I would advise finding a chiari specialist b4 u consider surgery as it could be the reason ur DS is having issues....

My NS had me scheduled for the TC release and changed his mind, I am so glad he did......I still may have to have the surgery, but I am doing so much better with the chiari surgery.

Please keep me posted : )

"selma"

[racheloneill]

Hello, I dont know wether my reply is going to be any help as I feel I am flailing in the wind myself, my child(9) was born with a teratoma which was attached directly onto his spinal cord and not the saccrocogeal area, it was removed at birth and we were informed that no further surgery would be required and he would have a perfectly normal life. 18 months ago he started to wet himself and then progressed to soiling accidents(he had previously had total control) after many trips to the doctors where we were told he was attention seeking I managed to kick up enough of a stinck that they performed an mri at which point they discovered the cord was tethered, he had it de-tethered 6 months later(British NHS waiting lists) and we were told his functions would recover It has now been six months without any improvement and we are about to start the catherterization process. We have now been told by our neurosuggeon and uroligist that detethering only stops the degeneration and the priority should now be improving quality of life and protecting his kidneys, my uroligist has said he is following guidence from recent long term studies from sweden-I hope this helps Rachel

[mrsbuboltz]

Thanks for the reply!!  He does have an arnold chiari malformation...as many with spina bifida do.  It was ruled that that was not the issue as our neurosurgeon thought that his cord was tethering.  My son has always had moderate hydrocephalus and has never been shunted.

[selmaS]

Hi...I too have tethered cord and we do have a forum here that other members do have this condition.
http://www.medhelp.org/forums/Chiari-Malformation/show/257?camp=msc

May I ask  was ur d=son checked for chiari?.....tethered cord can pull down on the brain stem and cause the hydrocephalus....and other issues....

The twitching may be a result of the nerves healing....I had twitching, but I did not have the release surgery yet, only the decompression for the chiari.

I hope we r able to offer u some peace of mind.

"selma"

[Threewheelmobile]

Im sorry have no knowledge in this subject.