Megan's Bilateral Shoulder Journey 2014-??: Never a Dull Moment

Well, hi there! I have decided to write a separate blog about all the crazy ongoing medical stuff going on now. The past several months have been filled with so much medical and travel so I wanted to have one spot where I can go write to try to keep things organized and I figured writing a blog strictly on present day events would be a good way to keep family & friends informed since I can write from any state.

So here's the scoop:

Next Tuesday I am flying back to Boston to meet with the chief of Harvard Shoulder Services in regards to my left shoulder/scapula. I wish I had some amazing cheery news about things getting better but at this point in time I don't. The past two months have been pretty hard and the hardest that I've had in a long time. Going to Boston in May was so worth the trip but it was also a complete game changer. I was originally sent there for my right shoulder but since the initial bilateral shoulder evaluation, my left side has taken a drastic turn for the worse. At first I thought it was just a normal flare up from being moved around but as the weeks went by I knew I needed to get seen by my orthopedic Dr. K here in IL because my left side has been hurting more than anything on my right side. That's not a good sign when the right side is really messed up. With the left side though I've had swelling on the side of my rib cage, very limited range of motion with increased posterior (back) shoulder subluxations and scapular winging, ton of neck pain, ribs being pulled oddly from the muscle spasms, its been hard to hold my upper body up making it really difficult to walk long distances, sit without some sort of support, and its been a nightmare to do that thing that has become foreign called sleep.

July 1st I met with Dr. K. The very first thing he said when he walked in was, "You look nice today" to which I replied, "Thank you; looks can be deceiving." Dr. K sat down and I told him something is very wrong with my left scapula. He had me stand up and he said, "How long has your shoulder blade been sitting out of position?" I told him since May to which I received a look of horror. Dr. K tried to manipulate my scapula back into place but as soon as he let go it moved back out. From there Dr. K told me I should go back to Boston to meet with Dr. W. Dr. K thinks a scapular fusion, scapular tethering, or scapular muscle reattachment with allograft reinforcement surgery may need to be done. For these types of procedures I'm told by two separate surgeons that Dr. W is the best so I'm hoping he has an idea or two. So send good thoughts/prayers/vibes this way so I hopefully find out what needs to be done for this left side on Thursday.

Left scapula is on the right side due to reflection in the mirror. When I move
my arm a few inches in front of me this is what happens to my scapula.

Left scapular winging from January 2014

Winging has gotten worse since January.
This picture was taken July 24, 2014.
Again L scap on right side due to reflection in mirror.

In regards to the right shoulder I received an email two days ago from Dr. W with very unexpected news. At some point in the near future I will have to go back to Minnesota to meet with an orthopedic at Mayo Clinic who specializes in complex tendon transfers to help resolve functional disabilities in very complex individuals. Both my shoulder joint and scapulothoracic joint are functioning abnormally which makes it hard to treat; "Treatment of either one can be complicated by an inability to the other portion to compensate effectively. Having seen many different individuals, the complexity of your problem is something beyond my abilities to manage in reliable fashion...I think his insight into your complex problem would be a value..." This advice reflects Dr. W's professionalism because he is looking out for my best interest. I respect that he wants me to get another brilliant mind opinion (even though I don't necessarily want to) from a different angle so he can have as much information as possible to make the best proposed treatment plan for me. Thanks Dr. W! I'm still kinda shocked/speechless. With the way my other 3 surgeons spoke so highly of this doctors talents, I really didn't expect to be referred to another surgeon. You have no clue what it's like to be told by the top minds in the country over and over again that they've never seen anyone with this combination of problems put together this way and that you very rarely see someone who has had open bilateral shoulder and open bilateral scapular surgeries for all of these various problems. It's hard to say what to even expect in the future because there's nobody to compare me to. With the way things are now, if my left shoulder & scapula were in perfect condition it would be difficult with this right side but you add in the fact that I can't even address the right side because the left side is a million times worse and that just makes things overwhelming.

Thankfully I have great support from my family, friends, physical therapists, and doctors. They may not be able to make things magically disappear but they keep on encouraging me and help me out all the time just by me knowing I have their support. My nieces and nephews always crack me up too so even when there are not so good things happening there is still a lot of good happening too.