RSD/Dystronia Experts
 

I used to follow this group closely; but unfortunately my daughter's other medical needs became urgent, keeping me "out of the loop" for quite sometime. We are looking for an expert in RSD and Dystonia. At this time, she is not a good candidate for Ketamine because she experiences full-body paralysis following anesthesia. Someone who specializes in never blocks, botox, etc. would seem to be the best option. We will travel to get her where she needs to be. Thanks for any information you can share.

I don't know what part of the country/world you're in & what would be close
for you.
I'm in Arizona & have an amazing P.M. Dr. who is an anesthesiolgist & she has
1st hand knowledge of RSD/CRPS. She has done over 20 nerve blocks
for me with great success. No remission (I'm older) but great pain management.
I was so very lucky to have found her!
My 1st nerve block was done elswhere & was a disaster. Glad I was
brave enough to keep looking & try again.

Dr. Tauben @ the University of Washington Medical Center in Seattle or even Dr. Michele Curatolo also at the UW.

What's your location?

We live near St. Louis but believe that we will need to go elsewhere. A few years ago Dr. Schwartzman recommended a ketamine coma but they were not doing them at the time. That would also be extra scary because she has very painful, full-body paralysis following anesthesia and actually lost the use of her right arm 3 years ago following one of these episodes. Just last week her "good" arm became impaired following anesthesia (likely IV associated); and to me it seems that dystonia is a big factor and needs to be addressed in addition to the pain. I just noticed that you are from NC, Russell. An online friend has suggested that we take her to a pain clinic in Winston Salem and we are considering that option.

Thanks AZ-Di and Zookester. We appreciate any direction.

Since you'r going to Winston-Salem may I suggest checking out Dr. Caress at the Duke University Medical Center there.
I saw him for an evaluation once and he was highly recommened by my neurologist and he did appear to be very good in RSD...
Best of luck to ya...