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. I also posted this on general health and rare conditions forum. Thank you