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My feet, ankles, back, thumbs, hands, wrists, hips, lumbar spine, side bones of back have been addressed. They are all deformed in one way or another by this disease. Fusions have been done for the joints that can be fused. Poor outcomes keep coming from any treatments. Now, jaw is failing. I am hoping to find a jaw hEDS maxillofacial surgeon/dentist in Salt Lake City. I hope I will find someone who can stabilize a slip/sliding jaw so I can get two diseased molars pulled. In 1986 a maxillofacial surgeon placed Teflon into both sides of my jaw. It is now failing. As connective tissues in hips and back have worn away, I don’t know what they can do anywhere without connective tissue to hold stuff together. Not shoulders or feet. I am thankful the Teflon helped for so long.
I wish my primary doctor was interested in this syndrome. His job so he says is to just order pain meds. He keeps ordering Percocet. I am at a high dose. 30 mg Percocet. I am a 74 yr old woman living alone with her kitty. I hired a disabled man for $18 an hour to drive me to the dentists and doctors. I am thankful I can afford to get food delivered. What’s goin’ on with all my bendy friends? Do any of you know dental surgeons who might help? Any advice about anything