Did you ever get any responses? or find an MD on your own? I hope things are going well for you. I was hoping you had found a GREAT MD, in Florida, preferably. I too am a nurse and my son was just diagnosed with a syrinx, T7 - T11. Tallahassee has no one with knowledge to amount to anything. It's extremely frustrating and scary. If you could share any info with me, I'd be very grateful. Thank you.