I've decided...
I have decided to hold off on surgery at the moment. I see the specialist at Children's next week. If I am told that I need a fusion by the surgeons in Boston, then I will have the surgery...likely in Boston! I doubt surgery will be scheduled for this summer, in which case it would likely be over winter break! If for some reason the surgeons in Boston say I need a fusion, and can fit me in in a couple of weeks, I will have the surgery this summer. However, seeing as that's not likely...this may just be my first summer without surgery in a LONG time!
My name is Jill and I am 29 years old. I am a former competitive gymnast and I have Ehlers Danlos Syndrome (hEDS), Chiari Malformation- Type 1 (8.5mm herniation), craniocervical instability, Neurocardiogenic Syncope and POTS (forms of Dysautonomia and secondary conditions to EDS), slight/minor Mitral Valve Prolapse, bilateral acetabular hip dysplasia (corrected in a procedure called Periacetabular Osteotomy--PAO), gastroparesis and delayed intestinal motility, Hashimoto's, Graves', Autoimmune Neutropenia, and Complex Regional Pain Syndrome (CRPS).
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