How Did I Get Like This?

How did I get like this? I look back on what my life was like just a couple years ago and I can't believe the way things seem to have just spiraled out of control. I went from a person who was hopeful at the thought of possibly being able to finally get a driver's license and transfer to a different college, to a person who is scared to death that a doctor might say, "I have to learn to live with this because it's too complicated to fix." because that means I'll have minimal use of my arms the rest of my life. It's all so crazy because this time two years ago I had just hit a new stable right shoulder record of 4 months. All that excitement lasted nothing but a few days because I then woke up one random day at the end of July with an unstable shoulder. Still, even with the instability my shoulder at least had some functional motion. Not for long; fast forward to the night of September 22, 2012. My decision to go to the emergency room for a locked anterior (front) shoulder dislocation ended up being life changing. The traction applied to reduce my shoulder was absolutely ridiculous; it was too much. I now know the lining of tissue that surrounds the nerves ripped. My body tried to heal itself by creating a ton of scar tissue. My brachial plexus (bundle of nerves that serves the shoulder) is now significantly scarred down and my nerves have no space to move which means I can barely move my right shoulder.

These are the nerves that are all scarred down in me
Photo courtesy Holladay Physical Therapy

What's so weird is I have had a ton of time to analyze my right shoulder over the past two years. At the end of the day, my conclusion is that a lot of my problems are stemming from nerve compression. Why do I think this? 1.) The "instability" is only on days where I have a ton of nerve pain up my neck and over my shoulder. When this happens the muscles over the front of my shoulder spasm which causes my shoulder to be pulled way forward which mimics a subluxation. 2.) When I bend my neck and "push" it towards the ground I can get my right shoulder to shoulder level STANDING UP!! It has been two years since I have been able to do this. Such a relief to know it is still capable of getting up that high!

Motion with neck neutral

Holy smokes! Look at what
happens when I push my neck towards the ground!
My right shoulder is at shoulder level!!

Motion with neck neutral

Neck "pushed" towards the ground and there's motion!

Now some people may think I have lost my mind to have let doctors operate on me over and over again without adequate proof to show the surgery was successful long term. Sometimes people get fixated on the combined amount of shoulder surgery and think any more surgery is just going to make me worse. There is so much that has occurred between surgeries and there are various aspects where the surgeries have been beneficial. During a doctors appointment though, there isn't enough time to go explain what led up to so much shoulder/scapular surgery and what aspects have improved when you're meeting with the doctor to determine what the heck is going on with your shoulders now. 18 shoulder surgeries sounds like an absurd amount; which it is. In hindsight, I think if I was diagnosed with BJHS  from the get go, I would have had less surgery because I wouldn't have been "piecemealed" back together. I can tell you though right off the bat there were reinjuries in between surgeries and things that occurred that were out of my control.

LEFT SHOULDER:

The left shoulder has had seven surgeries spanning from 2007-2011. Five of them were for my scapula (shoulder blade). You may ask how do you end up with that much surgery. This is how…

• Surgery 1. initial scapular muscle reattachment surgery Nov. 2007
• Surgery 2: slipped down the stairs two months after surgery #1 and retore the scapular  muscle repair
• Surgery 3: I had to draw on my shoulder blade where I was still having pain. My incision wasn’t opened up enough during surgery #2 for detachment to be visualized.
• Surgery 4: I had a muscle tendon transfer done. This was a different procedure than the other three. From 2007-2010 I had muscles that were detached at the very bottom of my shoulder blade. No wonder it never functioned properly and I’ve had continued shoulder joint instability problems.
• Surgery 5: Six months after surgery 4 I got sick and threw-up several times. The throwing-up action tore my lat & serratus tendon transfer.
• At the end of 2011 I choose to have a separate surgery because I was in school and the recovery from the previous time I had the muscle tendon transfer at the bottom of my scapula as well as an open capsular shift on the joint was very difficult. I wanted to wait until I was on winter break to have my joint addressed.

RIGHT SHOULDER:

The right shoulder has had 11 surgeries spanning from 2008-2013. Why so many??? This is why…

• The instability in the shoulder joint was addressed one side at a time between scopes and open procedures. They would tighten the front and I was unstable out the back. Tighten the back and I was unstable out the front. Tighten the front and the back and I was unstable down towards the ground.
• Bicep injury wasn’t in visualization with an arthroscope first time around. Bicep injury also did not show on MRI. I literally drew on myself the morning of surgery where I was having pain. An open procedure was performed and the injury was within visualization. My bicep tendon was moving back and forth like a windshield wiper and was coming out of the bicipital groove.
• Quadrilateral Space Syndrome. I had symptoms in 2008 and did not get diagnosed until 2011. Numerous times I asked my surgeons to open the back of my shoulder and extend the incision. Nobody would. During that time period, my body created its own protective mechanism and altered proper body mechanics. Of course I had continued anterior instability.
• I had an anchor pop out two separate times resulting in two separate surgeries.
• After a surgery in June 2008 I went to physical therapy. I told her not to move my arm any further. She moved my shoulder an extra inch and POP. My labrum detached resulting in another surgery.
• I also had muscles torn at the bottom of this shoulder blade from 2007-2011. If the scapula is unstable and has altered movement patters that is going to put additional stress on the shoulder joint and potentially cause instability issues like it did in my case.

In regards to BOTH shoulders, before any surgery began I was tested and informed by a hospital in Minnesota that I do NOT have a connective tissue disorder. Well surprise, surprise. I actually do. The diagnosis officially came January 7, 2014: Benign Joint Hypermobility Syndrome. If I had been diagnosed before all the surgery initially started I guarantee that things would be not be the way they are now. I wouldn’t have been “piece-mealed together”, I would have been braced longer, more precautions would have been implemented during the rehabilitation phase, certain physical therapists may have actually listened to me when I would say I feel things stretching or it feels like little fibers are ripping.

Hindsight is always better. My instate and out of state surgeons and physical therapists are fantastic; I do not blame them for the shape I am in at all. Each and every one did what they thought was the best thing for me with the information that they had at that time, and every single shoulder surgery was necessary. Should be "fun" to show Dr. W this new shoulder motion discovery on Thursday!