Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)

The CafeMom Newcomers Club The CafeMom Newcomers Club

Tethered Spinal Cord Syndrome

Posted by on Feb. 5, 2013 at 6:49 PM
  • 8 Replies

Has anyone had their child diagnosed with this? If so did you do the surgery and what were the results? My dd was diagnosed with this. Her symptoms are urinary and bowel incontinence. I have heard the the surgery does not always resolve all the issues. I want to do what is best for her. My fear is that we do the surgery and she still has incontinence. However I don't want her to have to take medication for the next ten years until she is done growing. 

by on Feb. 5, 2013 at 6:49 PM
Add your quick reply below:
You must be a member to reply to this post.
Replies (1-8):
cjsix
by faith on Feb. 5, 2013 at 6:55 PM

BUMP!

rebecca_tal4
by Member on Feb. 5, 2013 at 9:46 PM
1 mom liked this
My daughter has chiari malformation, which is the only reason I know what TC is, I suggest you search for TC groups on facebook. Chiari and tethered chord go hand-in-hand a lot of times.

Finding chiari groups on facebook gave me huge amounts of first hand info from people who have it.
Posted on CafeMom Mobile
MaMa_Bear_2010
by on Mar. 14, 2013 at 9:48 PM

My daughter was born with a tethered spinal cord.  I didn't know until she was born with a lump of lipoma sticking out on her back.  She had normal bowel and urinary functions.  At 4 months, she had her MRI and immediatley followed with surgery.  There were a few complications with infections, her wound opened up a week later, and loss of urinary function.  Two week stay at the hospital after the surgery.  She came home with a PICC line and the need for catheterization for a couple of months.  She is two now.  She didn't start walking until 18 months.  She does have constipation and has had a couple of UTI's in the past 4 months.  I don't know if her bladder empties all the way and has incontinence.  I just finally found a hospital with myelo clinic, which helps coordinate all the specialists.  Her original neurosurgeon had moved out of state to another hospital and I was left not knowing what to do next when she was 9 months old.  Check out the myelo clinics in your area.  Did the doctor say she has a form of spina bifida?

T-HoneyLuv
by on Mar. 14, 2013 at 9:50 PM
DS has Neurogenic Bowels and Bladder.
Posted on CafeMom Mobile
taniamorse85
by Silver Member on Mar. 14, 2013 at 10:37 PM

I have it. I 've had 3 releases, and although I could use another one, no neuro will touch me because after each subsequent release, the scar tissue from the releases tends to resemble normal cord tissue.   That increases the risk that the surgeon will cut away what he is not supposed to cut away.


Anyway, my bowel and bladder issues were significantly improved with the first surgery.   I do have to cath, but that is because I have a neurogenic bladder thanks to my spina bifida.  As for bowel, I have no issues any more.  


I would definitely suggest that you consider a release.  Additional ones come with risks, as I stated before, but the first one can be very beneficial.  For me, having the incontinence issues resolved has greatly increased my independence.  If you do decide to have a release done on your DD, be sure you do your research on neurosurgeons.  Fortunately, I had ones that had done the surgery multiple times before and were comfortable with doing it, but not all neuros are.

jconney80
by Platinum Member on Mar. 14, 2013 at 11:54 PM
Bump I don't have experience with it
Posted on CafeMom Mobile
JasonsMom2007
by on Mar. 14, 2013 at 11:57 PM
No but my ds does have urinary and sometimes bowel incontinence and doctors can't figure out why.
Posted on the NEW CafeMom Mobile
flowerfunleah
by Silver Member on Mar. 15, 2013 at 12:37 AM

Good luck to you mommas, we'll keep you in our thoughts and prayers!

Add your quick reply below:
You must be a member to reply to this post.
Join the Meeting Place for Moms!
Talk to other moms, share advice, and have fun!

(minimum 6 characters)