Tethered cord release surgery

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]

Hi and welcome to the Chiari forum.

I am not an expert and this is only a guess, but knowing how our nerves r affected with these surgeries, I think it is possible that ur DS's nerves r in flux...and still healing...while in flux, they just r immobile....stressed from surgery and once the healing process is done or close to being healed....things will begin to flow as b4 or better than b4.....
The flipside of this coin is nerve damage, which is always a possibility with these surgeries too.

I pray it is my first synopsis......
May we ask who did his surgery?.....was he checked for chiari?

"selma"

[mrsbuboltz]

He does have an arnold Chiari malformation as most with spina bifida myelomeningocele do. Doctors have never even brought up the arnold chiari malformation to me.  How I know he has it is from a dictation that I recieved from his neurosurgeon.  I am a nurse and am thankful that I have the ability and the knowledge to research info myself as the only advocate I feel my son has had is me. He also has moderate hydrocephalus that is unshunted but his neurosurgeon felt that it was tethering that was the cause of his lack of bladder function.  His hydrocephalus has been stable since the age of 2 and has not changed on imaging.  Tristan just went through a huge growth spurt  (he is 5 foot 9 inches tall and his neurosurgeon said in his 20 years of practice he has never seen a spina bifida child this tall) which is another reason they figured it was his cord.  Dr. Petronio did his surgery from Gillette Childrens in Minnesota.  The surgery has been very frustrating for us as his mobility is not as good.  He can walk but up and down stairs is tough and his gait has changed.  I know that it is very early as surgery was done on 9/27 and I just pray that it is the healing process that is causing these changes.  We have also now gone to a foley at night and straight cathing during the day.  Before surgery we never used a foley and did not straight cath at night as he would be incontinent at night and the need to do it wasn't there no he doesn't go on his own at all.  

[n40066]

is there any chance the meds he is on could be causing part of this problem?  i know someone else who recently had a similar issue, but not as severe.  just a thought.  i'm really sorry your family is going thru this, but your son sure is lucky to have a nurse for a mom!!
elizabeth

[selmaS]

Hi...Lizzy is right there r meds that can indeed cause these issues.....

And it is highly possible that it is the TC and the release surgery is just as tricky as any major surgery...and it does take time to heal.
During recovery from the  chiari surgery we r told to expect symptoms to resurface.We all heal at different rates....I have Ehlers-Danlos which many chiarians do...this makes us heal even slower.....

I pray the bladder issues clear up as he weans off the meds and continues to heal.

"selma"

[mrsbuboltz]

Thanks!!  He isn't on meds now that he wasn't on before surgery.  He was on percocet for awhile for pain after surgery but he has not been on them now for over a week.  It's sure nice to find others that go through some of the same things.  People that don't have any of these issues don't understand what we all go through.