Hi Paul!

Welcome to NeuroTalk!
I'm sorry, but I don't know anything about your condition. However, we do have a great spinal disorders forum where you will surely find others who will know and understand your situation. Feel free to roam around and join in anywhere. I hope you'll get some answers— and a new doc!
Here's a link to our spinal disorders forum:
http://neurotalk.psychcentral.com/forum22.html