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.