Ehlers-Danlos mama trying not to twist things up *too* much!

Wednesday, October 13, 2010

Story of My Right Shoulder

I had my post-op with my surgeon/wound check yesterday. All went well. Last week's cellulitis scare has reduced itself to nothing more than a few scabs where the blasted Tegaderm maimed me. I'm still on antibiotics for the next few days and have lost a few layers of skin near the end of my shoulder incision as well, but I am hopeful that I am heading in the right direction (and away from the Wound Care Center) at this point.

For those of you who are interested, here's the story about the procedure I had: Last year around this time, my right shoulder was very unstable, primarily posteriorly. I'm not sure if an of my fellow EDS-ers have experienced this with their shoulders, but I've always had primary posterior instability, then multi-directional. This has made for some awful interactions with the medical community, especially before my diagnosis. As a teenager, I would end up in the Emergency Room with a posterior shoulder dislocation only to be x-rayed, sent home, then called back once a radiologist viewed the films and realized that my shoulder was out. This led to the total destruction of my left shoulder, but also to my EDS diagnosis once I saw an appropriate specialist.

Back to last year. My right shoulder had been reconstructed 3 times. Each time, my surgeon tightened it to a point where “No normal person would have regained motion.” Each time, I did. Sadly, each time I not only regained my normal motion, but my hypermobility. Shortly after sensing hypermobility, I would subluxate, then dislocate. The surgeries each lasted about 8 months, so after the initial period of immobility, recovery and therapy, I usually had a few months where I felt like a “normal” person. Each time the surgery failed, I felt unlucky, but not necessarily doomed.

That summer day, I was in considerable pain, as I'd just undergone reduction mammoplasty in an effort to alleviate the severe cervical pain I'd suffered since pre-adolescence. Unfortunately, I'd suffered some EDS-related wound closure complications. So, as I sat in the orthopedic surgery office, sweating beneath layers of surgical dressing and my enemy tegaderm, I wasn't having complete clarity of mind. I was expecting to hear that we would have to repeat the shoulder reconstruction, as we had the past few years.

Instead, my usually busy surgeon sat down with us. “Look, “ he said. “There is a spectrum of Ehlers-Danlos. You have proven where you fall on that spectrum. Another soft tissue procedure is not going to work.” If my left shoulder wasn't already fused, he would have recommended fusing my right. Instead, he wanted to try a posterior bone block, a non-anatomical procedure designed to make it anatomically impossible for my shoulder to dislocate posteriorly by adding donor bone to my glenoid. (Building a better socket, where the ball couldn't just slide around at will.) He wanted to use donor bone because the alternative, taking bone from my own hip, is very painful. I remember his words exactly. “I wouldn't want that done to myself. Therefore, I'm not going to do it to you.”

Last November I had the posterior bone block with donor allograft. The recovery wasn't bad at all...little blips here and there, but after a few months, my shoulder worked quite well and didn't cause me any pain. In April, I had my ankle reconstructed and ended up non-weight bearing, on crutches, for 3 weeks. Toward the end of the third week, my right shoulder really started to hurt. I had a cortisone shot, but didn't think much of it. They freed me from the crutches early, so as not to torture my shoulders.

In the months that followed, I had pain in my right shoulder more frequently. I was going to PT for various other joints at the time. I went in one day in so much pain that she said, “You need to tell your ortho about that shoulder.” I made an appointment, thinking that it would be nothing another cortisone shot couldn't fix. I don't know that he was overly worried at the time, either. He injected me and sent me for a CT-scan.

My CT-scan follow-up was grim. Apparently, the allograft bone block had been resorbed by my body, which meant I had extra screw sticking out and presumably catching on my once-again unstable shoulder. I had 3 options: 1. repeat the surgery with the iliac crest autograft 2. reverse shoulder replacement (which has only been done in the US for 8 years—I'm 29 and planning on using my shoulder for longer than that!) 3. shoulder fusion

I obviously went with option 1 and am happy with it today, 13 days out. Should it fail, I probably will have to go with one of the other 2. My biggest concern until recently about shoulder fusion was really pain. I did not have good pain control after my left shoulder fusion in 2000. My doctor is more concerned about how I will manage my life and happiness and personal care, but I think he forgets that 1. I am more flexible than he is and 2. I have adjusted to not being able to do certain things. I'm still adjusting. Losing swimming, for me, was huge, but I moved on.

But today, I don't have to think about bilateral fusion. The shoulder is good. The pain control is good. The weather here in New England is beautiful and I am going to try to get out and enjoy it while my boys are at school.

Have a good day, friends!

1 comment:

  1. Hi, my name is Jenny Millington. I have also have had 3 surgeries tightening my right shoulder, none of which have worked. Now my doctor has also brought up the fusion, I have no idea what to do. I am only 20 years old and I dont want to lose the mobility of my arm. Seeing as you have been through this what are the downfalls of the fusion?