[Krbj]

Hi. My daughter is 21 and has Klippel Feil syndrome and is congenitally fused C1-4 and C6-T1 and 3 years ago was surgically fused C4-6. Since her surgery she has had so many new health issues. She has lost all external sensation in her right leg, has chronic lower back and neck pain on narcotics and had falls because she gets sudden severe lower back pain and her right leg gives way. 2 months ago she had one of these falls and since then she either can't walk at all because her right leg does nothing or if it does work it is like jelly. MRI shows nothing new. EEG - no epilepsy. CT shows nothing new., nerve studies ok. The only thing we are told is that for some reason her nerves in her leg are not connecting with her brain. She is in rehab but it is very distressing that there is no improvement. Does anyone know of anything like this or have anything like this. We have seen several neurologists, neurosurgeons, orthopaedic surgeons in last 2 years but no answers. Thank you

[Kitt]

Welcome Krbj.

[Krbj]

Thanks she certainly has some of these symptoms so will talk to neurologist.

[Lara]

Hi Krjb,
Welcome to the NeuroTalk Support Groups.

I had a quick search to see if there were many other members who had posted in the past about Klippel Feil Syndrome. There were only a few posts from a while ago.

If you want you can try the Forum Search Feature yourself.
http://neurotalk.psychcentral.com/search.php

I also wonder if posting on the Spinal Disorders & Back Pain Forum would be helpful as well as here.

I'm sorry your daughter is dealing with all these new symptoms and I truly hope that you are able to find some answers soon.

- The information about CMT that you responded to in your last post is actually in Kitt's signature file and pertains to her own condition. It wasn't posted directly to your questions about your daughter. -

take care.

[Krbj]

thanks for the welcome Kitt and thanks Lara for the welcome and explanation. I did look more at Kitt's and now it makes sense as my daughter doesn't really fit into that syndrome I don't think.
I will look at the other forum you mentioned as well. Thanks for your help