syrinx?

[lwill]

I'm new here and might be posting in the wrong spot.

My now 20 y/o DD was diagnosed with Left Thoracic Idiopathic scoliosis, in 1998, due to there being a 51 degree curve, she had surgery. Rods were placed, and they got a 27 degree correction. At the time we were told left thoracic was rare, usually "caused" by something, and tough to operate on, with small to no corrections. All sorts of test were done to make sure this was idiopathic. Her surgery has been very sucessful, except for some disturbing pains and twitches. Some numbness and tingling. Yesterday we were told she has a syrinx, which is causing all this. Starts in her cervical spine, they can't see much past the rods, and it is large enogh to consider surgery. But the results and/ or complications are not so great. Her rod surgery was bad enough, I never heard of this and frankly to scares me more then the scoliosis, and that surgery. Anyone ever heard of this? And any advice you have!!!!

Thanks
Lori

[Carmell]

Hi Lori,

Yes, I've heard of syrinx. The syrinx would explain the odd sensations and pain/discomfort she is having. Obviously the syrinx repair would have been much easier to correct prior to scoliosis/fusion surgery. I would suggest that you see a very good neurosurgeon and a very good orthopedist who work well together. I know of a handful of neurosurgeons in the country (USA) who are very good at repairing syrinx issues. Hopefully she can be monitored until the right person comes along to do the repair surgery. You are right - its a big deal. Scoliosis surgery is a big deal. Honestly, my son's spinal cord surgery was easier to recover from than the scoliosis surgery, if that's any consolation.

http://www.syringo.org/ this is just one of many websites describing syrinx. If you do a search for Syringomyelia, you will find lots of information.

You have a lot to consider here. Write a list of questions for the docs. Make sure they are specific to your daughter's situation. Hopefully you will find a doc who will be willing to give you a good recommendation. Good luck and keep us posted.

[lwill]

Thanks, I'll check it out. I'm just worried about this thing and whats going on between the rods. Because of the rods, they can't get a good look at it. And yes, this should have been caught and fixed before the rods were put in.

Lori

[lwill]

I checked that out, and WOW! Thanks so much.

Lori