Saturday, March 8, 2014

Heading to Pennsylvania

I'm sorry for being absent from the blogging world. It has been quite a busy month with a change in plans...again. I ended up going for the MRI of my neck. It did show I have arthritis and a few mild bulged discs but it doesn't show anything that explains why my motion increases when my neck is bent. The doctor I saw was very nice and everything but he didn't really have any suggestions. Which means I had to use my resources and do my own research.

One of the pluses about blogging and sharing my story with others is that I have been fortunate enough to have gained a few "email pals" all over the place. It's one of those things that would have never happened if I didn't have any medical issue. It's funny because I have not met any of my email friends face-to-face but there is still a supportive "bond" because we all share at least one thing; an understanding of what it's like to have a bad shoulder.

With one of my shoulder pals, she had mentioned she had a dynamic neuromusculoskeletal ultrasound done. This is a specialized ultrasound that views the nerves, ligaments, tendons, etc. while the shoulder is in motion. It sounded very interesting and something that could potentially be very beneficial for me; especially since my problem is when my shoulder is moving. Every test I've ever had done requires my arm to be still. I told my parents about the test and needless to say they were intrigued; especially when the 2 pictures below demonstrate what happens on a weekly basis for no apparent reason. It is not fun and it doesn't feel very pleasant either.

There are many days where I wake up like this for no reason.
My muscles clamp down and everything gets all out of whack.
This particular episode happened last weekend.  I was
locked this way for 48 hours unable to bring my arm to my side. 
Hand discoloration that occurs every time. 
As I did my research, I came across a paper that had two email addresses of the doctors that do this ultrasound in Pennsylvania. When I spotted those addresses, I got so excited and scribbled them down immediately. I decided to compose an email of my symptoms, pictures of my motion with my neck bent versus neutral, and ask if they knew of anyone who does this test in the Chicagoland area. There is something so bluntly obvious going on but we haven't been able to pinpoint what it is yet. My mentality when I compose these types of emails is, I have nothing to lose and the worst thing that is going to happen is I won't get a response. Fortunately, 2 hours later I had a response!!

Attempting to do a punch-up. It has only gone this high for 18 months.

Doing the same punch-up. Only difference is my neck is bent.
Straight-arm raise. Past 18 months this is as high as it goes.
Holy cow! Bend my neck and I can move!! Who'd a thought?

Unfortunately the doctors in Pennsylvania did not know of anyone who performed this specific ultrasound test in our area. As I told my parents, the East coast is feeling left out because we haven't been there for medical treatment! This week my mom and I will be traveling to Pennsylvania to meet with the doctor and have the ultrasound done on Thursday March 14th. Based on the information I sent, the doctor thinks there is a problem with my brachial plexus and will be evaluating me for a condition called thoracic outlet syndrome. We will be there Friday as well because the doctor may want more detailed imaging of my thorax and shoulder. I'm very anxious and at the same time scared for this upcoming appointment. I'm scared because it is going to more than likely kill because my motion will have to be forced and my shoulder has a mind of its own and freaks out. I'm also scared for the test to come back "normal" because something isn't right; however, I just have this gut feeling that where we are heading is where I am supposed to be. When I contacted my doctor in Colorado to see what his opinion was his response was, "I am in favor. The more info the better; particularly with your shoulder and neck issues!!" It would be devastating to find out in rehab after the reverse shoulder replacement I still can't move because it's a nerve issue and not strictly a bone/joint problem.

In case you didn't know May is HMS/EDS (Hypermobility Syndrome/Ehlers-Danlos Syndrome) Awareness month. I created tshirts to raise awareness. We need a minimum of 30 orders for the shirts to be printed. They are $15 each plus shipping. So far we are over half way there!! This is the link to the shirts. HMS/EDS Relief Fund for Megan
I will be donating a portion of the profits to the EDS National Foundation. EDS National Foundation

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