Che'ri
Hi, I too have this painful disease. Diagnosed in 1999. I do not believe that there is a dr. out there that knows a whole lot about this. I have been through so many. I have syrinx in T 6 thru 11. I have an appt. with a neuro-surgeon next week but all he wants to do is surgery to drain the syrinx. I am totally against that. I hope you find someone to help that is also undersstanding about the pain this disease causes. Luckily my M.D. understands the pain issue, he just doesn't know much about the disease. Good luck, Che'ri