The News

I heard back from the specialist who I saw in clinic with my EDS specialist. The news is a bit confusing and complicated. I've discussed earlier the readings of my shoulder MRI, which we had sent to this specialist as well. Shoulder MRIs can be tricky to read because there is a lot going on in the shoulder, this makes it hard to see and be precise about possible damage.

Just to summarize about the reading of this same MRI; the first shoulder surgeon who I saw thought there was no possible tear. He recommended doing more PT and things would get better. The next should surgeon I saw said it was too hard to tell if there was a tear, and that if there was one she thought it was small and that waiting for surgery would not cause any damage. The shoulder surgeon I saw most recently thinks that there is a tear and that I need to have surgery sooner rather than later.

Even with this new news, I still feel as though I am not ready to have surgery. Like I've said before, having surgery as an EDS patient is complicated. There are many possible complications that will occur, understanding that I strongly feel that surgery is absolutely the last resort and I can't come to that until my quality of life is effected on a daily basis.

I will be checking in with the second shoulder specialist I saw to get her opinion once again, but I don't think there will be any changes in our plan. (she's the one who really understands EDS and me as a patient, the other two just don't get it- see "You Win Some, You Loose Some" post explaining what makes a good doctor for EDS patients).

Keep calm and carry on.

It's Waiting Time

After my trip to my EDS specialist a couple of weeks ago, I took another trip that following week to go to a new clinic opening with my EDS specialist and a shoulder orthopedic surgeon. I'm glad I went because it's always a plus to have two heads, with different backgrounds, thinking at the same time. They were both in the room when I was being examined and they were able to bounce idea off of each other- this is the way medicine should be done, as a team. We didn't get any new information on my shoulder, but it was worth it for my EDS specialist to be able to see my shoulder from the orthopedic perspective so he can be more helpful down the road suggesting treatment methods. It is clear that eventually I will have to have surgery on my shoulder, but I'm hoping that I can get another 2 years out of it. Like I've said before, surgery is risky for EDS patients, even more so on the shoulder, and even more so with mulit-directional instability on the shoulder (basically I'm unstable at every direction). Deciding when the right time to have surgery is up to me because I'm the one who lives with it on a daily basis, and I'm not to that point yet- hopefully I won't be to that point for another 2 years or so.