dermal sinus, tcs and spinal lipoma

[joanna hanna]

hello,

      my daughter just had her spinal cord resectioned on 11-29-00 she was almost 3.  after we got her opened we found scarring and a dermal sinus wfich ran up through her muscle, a spinal lipoma in the conus and filum terminal, with a tangled nerve root.  she had to have her cord released in 2 places and we actually found her conus at L5. i have a couple of questions?

1.  after her surgery she was unable to voide at all for 18hrs and was cathed once and should had been a second time (her bladder was distended for 5hrs the second time) once she started to voide she was wetting 2-3times a hour.  this has cleared up a little but 2 weaks after discharge she started to void more freguantly at 2-3times per hour she had also had a growth spurt could this had acrovated the bladder problem again temporarially she did have a ua and it was negative can growth after spinal surgery cause temporary B\B problems?

2.  what are the fiunctions of the 5sacral nerve root since her nuersurgone cant remember which one was tangled what are all htere functions?

3.  is it itrue that there is no way to free the tangled nerve root she has in the lipoma, and if not do ytou know where or how the procedure is done?

5. finally my daughter has a partial sacral agenesis how can she have this and not have SBO?

6.  what are the statistical precentage of retetheres in a double cord release i know all people are different just wondering?

6.  she is suspected of VATERS do you know by any chance what kind of work up she needes she has vertabre,heart, and renal defect?

thanks i know i want alot of info but she is after all my baby:)

joanna hanna
katelynn3 (tcs,spinal lipoma, cong scoliosis, partail sacral agenesis, 13ribs, mild dev delays, seizures, mild hypotonia, si problems, bilateral renal reflux, damaged right kidney)

[CCF Neuro[P] MD, RPS]

Dear Joanna Hanna:

Sorry that your daughter has such major problems.  Most of these questions are difficult to answer and if your neurosurgeon and pediatric neurologist haven't been able to give you good enough answers, then I am afraid that I won't be able to help much either.  I am handicapped by not knowing your daughter, the operation, what was seen during the operation, etc.  We think that VATER syndrome is a congenital problem that likely there was an insult during the development of the fetus.  Likely, there is a genetic component, but what this is and how it causes the syndrome is, for my knowledge, not clear at present.  Your daughter has an occult dysraphism and therefore problems with here spinal cord, and sacral plexus.  Whether or not she has a true VATER syndrome is not crystal clear.  A simple cardiac ECHO would check the heart.  I don't know the history so I can't comment of the kidney problem being primary or the reflux causing the kidney problem.  Yes, surgery can cause some bladder problems, especially immediately after surgery which eventually clear up, but since I don't know exactly what went on during the surgical procedure and the immediate care thereafter, I can't comment.  The functions of S4/S5 are in sensation in the anal area and voluntary anal contractions.  I can't comment on the lipoma question.  Whether a retethering occurs depends on the original lesion and the surgery to correct the problem, so statistically it depends on the etiology and surgeon.  Sorry I am not much help.

Sincerely,

CCF Neuro MD

[joanna hanna]

thank you , youwhere able to at least partially answere some questions i had, katelynn has already had a echo and heart surgery at 6 1\2mo due to paten ductus arteriosis.  i did speak with the NS office this smorning and know he is denying that there is a nerve stuck , how would a good way be to see if this is actually a problem since her NS cant seam to get what he tells us right.  would a mri with contrast work to identify any nerve that may be stuck in the lipoma?  

thanks very much
joanna hanna