Hi All.
It's been a while since I've posted, but I wanted to let you know the latest. I'm working with my Neurologist to try to put off surgery for a couple of years and avoid becoming addicted to all the narcotics everyone seems to throw at Chiari patients. My Neuro Doc suggested we try botox injections for the head pain that has been my biggest and worst symptom.... Constant 24/7 pain in the back of my head.
Anyway, I had the botox injections on Dec 17th. I was warned that it might work, it might not. It can start to work two weeks after the injections are done, but it might not start to work until you go back for the next session three months later... this is still pretty experimental for headaches.
I haven't had a headache for 7 days! At first I was afraid to say anything because I thought I would jinx it... and we're not even sure how long it will last (we're keeping our fingers crossed that it will last until my next session in 3 months). I still get the pain when I sneeze, cough, etc, but the 24/7 headache is gone.. OK. Technically, it isn't gone, but I can't feel it.
The botox works for headaches the same way it works to smooth out wrinkles... it paralizes the nerves. I understand that this in no way cures me or makes me better, but I don't need to take pain meds that I'll need rehab for later (and they didn't work anyway). The process wasn't a lot of fun, it involved 36 injections, they circled my head like a halo, then went down the back of my neck and into my shoulders.
I don't know how long this will work or if we'll be able to hold off surgery (having Cine MRI next week), but I'll keep it posted here.. so far, for me at least, this has been exciting and wonderful. I was able to laugh with my daughter last night and it didn't hurt.. she said it was the first time she had seen me relax and laugh like that in 5 months.
My Neurologist has used the Botox for many migraine and brain injury patients.... I'm the first Chiari patient he's tried it on... Can you say Guinnee Pig? LOL But in this case, I don't mind.
PS: The back of my head is as smooth as a baby's butt... I may shave my head. LOL ;-)
Penny