Welcome to Neuro Talk. Though I know little about your condition, I did look it up before I came by to say hello. Had you undergone spinal fusion? injury that preceeded it? I hope that you are receiving good pain control, and that you have competent doctors who specialize in this painful condition. It said on one of the sites, that not that many doctors know what to do about it. What are your current protocals? I do wish you all the best, and sorry you have this. ginnie