I had an appointment with an orthopedic specialist for my ankle problems today after a gap of 10 years. The staff there was kind and friendly, but I didn't learn anything new. The bilateral ATLF in my ankles is still not intact, and my peroneus tendons still have split tears. The specialist did not suggest reconstructive ankle surgery due to its limited success rate in previous surgeries, and allografts are unlikely to provide a long-term solution in EDS.
This experience felt like most of my other doctor's appointments. I joke about it on Snapchat and probably irritate my friends by talking about it. Still, it's my way of dealing with the defeat of not receiving any new ideas or answers about my Ehlers-Danlos Syndrome. I didn't go there expecting a cure, but it's disheartening to hear the same responses, regardless of my issues constantly. It's always along the lines of "you have EDS, what do you expect?". The worst part is when people say, "but you look normal," EDSers broken body is measured against a healthy one by society, and that plain sucks!
This is an old image; EDNF is now the Ehlers-Danlos Society.
Update: I just got the x-ray report, and the radiologist interpreted the images as unremarkable, aka nothing is wrong. The orthopedic surgeon drew/marked my subluxations and bone misalignments on the actual image on the computer screen to show it to me. Besides that, I could see the misalignments myself. BUT yet radiology calls it unremarkable. No surprise people with EDS don't get any credibility if our radiology reports don't reflect what is happening. By the way, this isn't the first time I noticed this; one time, my vertebrae were misaligned 8mm to one side, and radiology found "no issue." Or even worse, on several cervical x-rays, no radiologist discovered a cervical rib (an extra rib), which a Cleveland clinic physician found. How can you miss a spare rib????
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