Posted by James C on February 05, 1999 at 21:27:40:
Hi there,
I am in my sixth month of an unrelenting cluster with 2-5 episodes a day. I've tried every drug my Neurologist can think of with little effect. I've decided it's time to try something a little more definitive. My doc set me up with a Neurosurgeon who agreed that I'm a good candidate for a selective radio frequency rhizotomy. This procedure involves sending a current through the first (and possibly second) division of the trigeminal nerve. The result is killing the sensation in the area around the eye where the cluster pain is focused. This leaves you with a permanent numb sensation in your face, but should hopefully completely mask the cluster pain. This procedure is more common for treatment of Trigeminal Neuralgia, but has seen some success with clusters. I'm looking for anyone who has had this procedure done. I'm curious to know how large an area of numbness you are left with, as well as how uncomfortable the numbness is. Obviously there's no way a little facial numbness could compare with CH pain, but I want to know what I'm getting myself into.
Thanks,
james