Let's be honest, not every doctor is the best, and as an EDS patient, having a good doctor doesn't just mean finding the most talented one. I need a doctor who is going to take time to help develop a plan that makes sense for me. They have to be curious because chances are they've never had a similar case. Most importantly they have to be willing to learn about EDS, because again chances are they haven't seen many patients with EDS.
My favorite doctors, the ones who have truly changed my life, are these kinds of doctors. Maybe they aren't the best, most talented, nationally recognized doctors on the plant, but they are the best doctors for me because they know what they don't know and they're not afraid to say things like, "Madeline, everything about you petrifies me," (which is what my hip surgeon said to me the last time I saw him in clinic before having surgery when we were talking about concerning complications post-op). For many people things like this would make them worried, but it's comforting to me because he's not afraid to be honest and it shows that he understands EDS and how un-expecting treating EDS is.
It takes time to find the right fit with a doctor. Shoulder doctor attempt number one was this afternoon; I saw a shoulder specialist at my Sports Medicine office. Nothing against him and his practice, but he isn't the doctor for me. He hasn't seen many patients like me, and he didn't seem interested in my case or in learning about EDS.
I'm looking into who else I can see for my shoulder, and hoping my PT and my EDS specialist will have some good advise. In the mean time, I'm out of the sling. Being out of the sling is a good thing, but it also means that using my arm more makes a reoccurring dislocation more likely, which of course I'd like to avoid. That being said, being out of the sling is a good thing because it will limit any more atrophy from occurring and hopefully help stabilize my shoulder with more strength from performing daily activities.
Short term goal, keep my shoulder (and all my other joints) in place.
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