Tales of an Uncooperative Shoulder
Hello Readers,
Here is the story of my outright defiant shoulder. I figured it is important to fill you all in since it has been an all-consuming, never-ending event since October. Although I have had countless dislocations in the past, nothing has been quite like my left shoulder. Six years ago, my capsule dislodged and stretched itself out so that nothing was holding my shoulder together. Ultimately, a surgery to tighten the capsule and anchor it down was necessary. I couldn't even get off the couch to go to the bathroom without having my shoulder dangle on the side of my body. The surgery was very successful and after a difficult recovery, my shoulder, for all intents and purposes, stayed in tact. That is until a year and a half ago when I started having scapular dyskinesia. In other words, my scapula started moving in all of the wrong directions and the muscles around it weren't responding to my brain's command to stay the hell in place.
Fast forward to October 2016, my shoulder starts dislocating again out of the blue. Rather than being a fairly straightforward reduction (putting the joint back where it belongs), it was completely uncooperative. My roommate and I tried EVERYTHING to get my darn shoulder back in its place. And then my scapula had the gall to join the party. So then, not only were we having to reduce my shoulder, but also my scapula. This endeavor became increasingly frequent and painful. My parents and sister also had little luck. These reductions could last 2-3 hours with breaks for breathing and small distractions since the pain was so severe. At this point I had already put myself in the bolstered surgical sling. At first it stabilized me, but it wasn't long before my sneaky shoulder found a way to dislocate itself while I was wearing the sling.
November rolls around and I now decide that this is becoming more serious and should consult with my orthopedic surgeon. After the visit, an arthrogram MRI is ordered. I figure I would know my fate soon enough. Dun dun dun. No, just kidding. After sticking a ruler-length needle into my shoulder and injecting some contrast dye, I was off to have magnets take pictures of my shoulder. Fun, right? Results of the MRI were as expected... my shoulder was f***ed up inside. The capsule had stretched out and my labrum was torn and disintegrating. I was told I would need surgery, but that I was "too unstable at this time." Gosh, I don't think I've ever hated a statement more than this one!
Enter the gunslinger brace (pictured above). This brace was the bane of my existence! I had only had this brace for a day when it broke, so we had to MacGyver the heck out of it so that we could get back to the NOPCO shop to fix it.
I spent about 8-10 weeks in this brace, a brace that was actually making it easier for my shoulder to dislocate because it's meant for anterior (forward) dislocations, not posterior (backward) dislocations. We didn't actually know that I was having posterior dislocations at the time, but the conclusion was that my shoulder was probably in a somewhat dislocated or subluxed (partially dislocated) state all the time. This all culminated to a week long hospitalization, ending with a trip to the operating room to get the shoulder where it belonged and then to cast me in a half body Spica cast. I was cast in the most awkward position ever. The picture below was taken right when I got back to my hospital room after the procedure. This lovely pup came to visit me and put a big smile on my face.
Please excuse my pajamas, messy hair, and IV pole. Also, does anyone think I look like Rocky? : )
6 weeks in the prettiest cast on earth and my muscles were offline. Although this was an intended result of the casting so that we could retrain the muscles, rebuilding those muscles has been nothing short of brutal! To top it off, while in the cast, my ulnar nerve ( the nerve that acts up when you hit your 'funny bone') and my wrist were injured. I now have nerve damage from my elbow to my fingertips. As a result I have developed yet another very debilitating syndrome, Complex Regional Pain Syndrome (CRPS), otherwise known as Reflex Sympathetic Dystrophy (RSD). The best way I can put it into words is that my hand is being electrocuted and has caught fire in the process. There is also altered sensation, pins and needles, and major circulation issues. I am used to pretty severe chronic pain, but this pain is new and difficult to ignore.
Since being in the cast, I have been in an airplane brace. Doesn't that sound cool? Well, it's not. I was told that it would increase my mobility and yet I barely could walk because my balance was off and I bumped into everything in sight for the first few weeks. At this point I was still walking with my cane for stabilization. Each week I went to the NOPCO shop at Children's Hospital Boston to get my brace adjusted.
Next steps.... I have been told that I am essentially inoperable at this time. It was devastating to hear because all I wanted was for this stupid joint to be fixed. Instead, I will be continuing physical therapy, occupational therapy, and starting biofeedback to learn which muscles are contracting. In the meantime, it's time to get my life back. So I'll leave you with this last picture of me singing in a recording studio for my acappella group's album.
NEVER STOP FIGHTING! Together, we have the strength to make it through!
