Clicking Clavicle

My left shoulder continues to be unstable. I'm trying to really hammer my shoulder these next few weeks so that we can see if PT can and would be effective enough to keep my shoulder in place and avoid an operative fix. My shoulder doesn't seem to be getting much stronger. I've been getting more discomfort after doing exercises, so I'm now just focusing on a few simple exercises which will hopefully avoid irritating my shoulder more.

Ever since my dislocation (about 3 weeks ago) it felt like my clavicle was moving around, but since my shoulder was so generally sore it was hard for me to tell exactly what was going on. Now that my shoulder has calmed down from the trauma of a dislocation, it's more clear; my clavicle is moving. Yesterday in PT it was trial and error to try to isolate my movements and instability to see what was going on. It seems that when I have downward pressure (when my PT would push down on my collar bone) there is much less movement and it makes my shoulder feel more stable. To try to limit some of the movement my PT taped my shoulder with McConnell tape (similar to Kinesio) to try to put pressure on my clavicle and avoid excessive movement. I also have foam wedges which I tape to my shoulder to put even more pressure on my clavicle and take up the space that is created around my clavicle when I move my arm.

We'll see how this works these next few days. I'm going to PT twice a week now so that we can see quickly if I'm getting more stable, or able to gain more strength.

You Win Some, You Lose Some

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.