Klippel-Feil Syndrome Support Group

Williams latest CT shows Occipital to C-1 still OK, C2 and C3 degenerating, ACDF still stable at C4 to C5-6. Hands on examination shows that he now has no sensitivity to hot and cold in formerly just pins and needles numb areas. Doctor is scheduling a sedated MRI Cerebral Spinal Fluid (CSF) Flow Study.

Hi Grandma, I just wanted to say that sounds a lot to take in for all of you...I really hope things work out & the scan means they're able to help William more....jay x

Grandma- good luck to William. Repeat MRI is always good considering the neuro changes. Glad to hear the atlanto-occipital fusion is not degenerating at least for now. Andi has a C1 fusion too. I worry more about that than any of her other spinal problems. How are William's plantar reflexes (is he positive for a babinski?). Please keep us informed after his scan. Hoping for good news. lisa

William's fusions are at C5-6 and T2-3 with surgical fusion of C4 to C5-6. Doctor is concerned that he has probably developed a syrinx because of the spreading total numbness and lack of sensitivity to heat and cold.

Thinking of you Grandma and of William. As Jay said... thats a lot to take in. So the MRI done that way would show the syrinx, if it was there?

Hugs.

Big hugs to your Grandma, I am thinking you and William and praying for the best possible outcome.

Grandma, Hope it goes wll with William. I have 3 syrinxs and had similar symptoms. There are meds that help ( gabapentin, central nervous system depressants ) Surgery can come with complications, this I know from experience. Wishing the best for you and William. Stay strong. Cathy

Thanks, Cathy. He has been on a low dose of Gabapentin for a while and now is on Mobic, too. I have been reading everything I can find on syrinxs on med blogs, personal stories, medscape, and medline since the doctor mentioned the possibility. I appreciate you sharing with me.

Grandma,

I am thinking of you and William. Please keep us posted, as I know you will. Cathy you are such a fighter...I am honored to know you.

Such wise ones we have here.

Rosie

Wow, don't know where to begin, so will keep it short and to the point-

Rosie, kick-butt research you did there!! Thanks for sharing the bone pain/disease info which is very helpful.

Kaisa- so glad you found us. Nice to have a presence in Finland. We also have folks from UK and Australia in our group. And, MDJ has its roots over in Israel, so we truly have an international presence here. I'm not surprised that nobody in Finland knows about your problem. It is very difficult to get agreement in this country on it even. So stick with us and we will hopefully sort out the problems together!

Grandma- syrinx is not great news but as you know, isn't uncommon with spinal deformities. I do hope the news is good and if he has one, are they considering draining it? Location? Cervical? Good luck and keep us updated please.

Hope everyone is having a lovely day today. Thinking of you all. My daughter had her first good day in several months. She actually drove (which she usually can't do) to her boyfriend's for a real date. She needed that and so did I!!! I slept like I haven't slept in a very long time. I hope the good fortune spreads to everyone at least for awhile. Lisa