Well my Primary last night saw me for the first time since he got the news about this condition, and he said he's not so ready to throw in the towel....He said he was too proud of the progress I've made with my health in every other aspect so he wants me to schedule an appointment for a consult at The Hospital for Special Surgery in New York City....US News and World Reports #1 hospital for spinal surgery, #2 hospital for Rheumatology (in US). He said he recently had another patient who was deformed by the same condition get helped significantly by a trailblazing microsurgery they do there followed by a new drug therapy that involves "off label" use of an anti tumor(?) prescription...
I'll keep you posted.....fingers crossed and prayers welcomed....
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