Guest guest Posted August 30, 2004 Report Share Posted August 30, 2004 Name: Sandy Rodgers Country: USA Age: 48 Type of EDS: clinical dx of Vascular type Occupation: Educational Therapist, now on disability Volunteering/Hobbies: Now: writing, medical research, creating/coordinating class action suit against major HMO for its *alleged* refusal to diagnose and treat Chiari Malformations. Before illnesses took over: camping, hiking, sculpting, designing environments, animal rescue, and photography. Current issues/stressors: recovering from 2/20/04 brain surgery for Chiari/Syringomyelia; planning ENT surgery to fix longstanding CSF leak behind sphenoid sinus. Then, due to concentric cervical stenosis, I will have two neck surgeries to remove herniated discs and fuse my cervical vertebrae (front and back separately). I also have suffered from lifelong hemiplegic migraines, plus numerous other diseases, like skin cancer, cervical cancer in situ, lichen sclerosus, Raynaud's, Carpal Tunnel, Chronic Fatigue, Shingles 5 times, etc. EDS makes it all that much worse, so I want to learn more about it and figure out how to manage it really well. (I've applied to be in the NIH study -- hoping they'll include me!) Current joys/announcements: I'm alive and well in beautiful Oregon, after growing up back east and then living in SoCal for 32 years! This place is wonderful! Lots of trees and animals, it's quiet, and there's no smog - -the sky is blue! :-) I'm happy here. And I love my 26-year-old daughter, who is my best friend, and I miss her while she is in law school on the east coast. Life is lovely, even with chronic pain. Thanks to all of you for creating such a good resource! ~Big hellos to and , my Chiari sisters~ hugs, ~Sandy Quote Link to comment Share on other sites More sharing options...
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