"I Don't Need Easy, I Just Need Possible"

There's so much to update on and I've been thinking hard about how I'm supposed to put everything into words because so much of it is visual. So here it goes. Hopefully this will make an inkling of sense...

Earlier last week there was a physical therapy resident following my physical therapist around. What type of reaction are you supposed to have when the introduction is, "This is Megan. You probably won't ever see another case like hers in your career. We haven't seen it and the top doctors have never seen it." Needless to say, it has been a roller coaster ride. It seems there is good and bad news at just about every appointment.  I guess the most important thing to say is that there is HOPE. I've already been blunt and asked if I'm stuck like this the rest of my life and with all the problems going on, nobody has said, "You're stuck like this and there's nothing we can do to help you." There are certain things that my physios have seen over the past couple weeks that makes them a millimeter more optimistic. It's going to be a very hard uphill battle but I never expected it to be easy.

Right shoulder/scapula-
This is the side that is considered "easy" because we know the nerves are a huge problem which is causing the lack of function and a lot of the pain. It's not appearing like strictly rehab is going to resolve the nerve issues but we can be proactive and do the things we can to make my shoulder/scapula stronger. As long as my neck is bent down towards the ground, or my head is in a cervical spine traction device, we can strengthen. My strength has increased and I seem to have a little bit more muscle tone compared to when I started. In physical therapy my therapist had commented that when you look at me, you actually see some muscle instead of just a humerus (upper arm bone). It is obvious my strength has improved too because my motion is better now than it was a few weeks ago (as long as my neck is bent).

Right motion without neck bent September 25, 2014

Right motion from July 28, 2014

Right mtion September 25, 2014

In addition to strengthening during my sessions, we work on soft tissue work to try to release the nerves, and we do nerve gliding exercises. We noticed earlier this week that instead of just getting the red splotches on the right side of neck/face region when we do light tissue work, I am getting it on my left side as well. Why? I don't know yet. The nerve gliding can be thought of like flossing your teeth. The end goal is to get the nerves to glide smoothly in the joint. I have a ton of of scar tissue compressing my nerves down so they can't move freely. There is a very short window of opportunity (10 min on a good day) for my physios to do the nerve glides before my nerves go essentially nuts. The goal is to get the nerve glides done BEFORE hitting the "tipping point" which causes a ridiculous amount of tremor-like activity over the front of my shoulder which oftentimes pulls my shoulder forward and causes my arm to lock at an angle with my elbow behind my back. Compared to two weeks ago, there has been progress made. When we first started, we could barely straighten my elbow with my arm at my side before things would freak out. We are now close to getting my elbow straight. I'm guessing the next step would be to move my arm an inch or two to a different angle and start the nerve glide process over. My physios have been able to get my pectoralis minor tendon (attaches at the front of the shoulder) to release a little bit too which is good but unfortunately there's no increase in shoulder function (unless my neck is bent).

Right motion September 25, 2014

Right motion September 25, 2014

Left shoulder/scapula-
When you look at the big picture as far as what is causing my symptoms, my left side is the hardest one to treat. With the right side the problem is "easy". It's nerves. With my left scapula there are a bunch of various issues and nothing wants to function the way it should. We're all in agreement that there is a muscle detachment which adds to the difficulty of trying to train my body to learn a normal scapula position. My physical therapist told the physical therapy resident the other day that this scapula is probably the most messed up scapula on the planet. Since the bottom of my scapula moves in towards my spine instead of out to the side, it is putting additional stress on the shoulder joint which seems to be causing the posterior (back) instability. To help train my body where my scapula is supposed to sit, we have been using special tape and my physical therapists will use their hands and manually move my scapula over to where it's supposed to be while I perform various exercises. We did discover that when my scapula is compressed manually against my ribs, I can get my motion to shoulder level. The last time it got close to being that high was over two years ago. The way they hold it is different than how it was held when I was in Boston. Since my motion increases and my pain decreases every time, the possibility of a scapular fusion is still being talked about. In the coming weeks we are going to take pictures and video and email it to the doctor in Boston. Over this past week I've been doing a few exercises with my arm pretty close to my body without my physical therapists holding my scapula and I am told I have better control and it looks better; however, it is really hard for me to tell because it does not feel that way at all.

Neck & Upper Back:
Traction has become my friend. When my head is in the traction device it's the only time that my neck is not hurting me. Since my right shoulder motion increases with my head in traction, it is leading us to believe that my nerves are getting compressed at the lower portion of my neck somewhere. The reason for motion increasing goes back to creating space for the nerves to move.

This is the C-spine traction device that my physios hook me up to
every visit. Since it is helping a lot they're looking into getting
me one for at home. C-spine traction device link

I've been having a lot of pain at the base of my neck and upper back. My physios have been investigating and there is an issue at my cervicothoracic junction. This is where the neck (cervical spine) and the upper back (thoracic spine) meet. They seem to think I'm having so much pain there because my neck is hypermobile and my upper back is hypomobile (lack of movement). Since my upper back isn't moving it is putting a lot of stress on my neck because it's doing all the work. To try to help alleviate some of the neck/upper back pain my physical therapist had me lay on my stomach face down and he did some light mobilizations to each vertebrae. I thought I was going crazy because every time he pushed a vertebrae towards the right I had the tremor-like activity over the front of my shoulder. When I told him what was happening he said, "No way! You have extensive T4 Syndrome!" In my head I'm thinking, "What???" When I stood up, my shoulder was REALLY pulled forward and my arm was locked at an angle with my elbow behind my back. He sat down and you could see the wheels were spinning in his head. I asked why is all this weird nerve stuff happening to me and he suggested that in addition to T4 Syndrome, I could have a component of reflex sympathetic dystrophy. Technically speaking, the 4th thoracic vertebrae has no relation to the brachial plexus so it's really weird that my right shoulder is producing the same nerve symptoms. I am always in pain and it seems my body is starting to react to that pain in ways I can't control. It's possible that with whatever is happening has gone to the cortical (brain) level and signals are being sent that are abnormal as a response to pain. It's really confusing and I still don't understand it really because I just learned about this issue yesterday. We still have investigating to do.  Honestly, I had never heard T4 Syndrome until yesterday either. I was told it's really, really rare and that I have a major case.
Here's two links on T4 Syndrome for more info if you feel like reading:
T4 Syndrome
Shorter Overview of T4 Syndrome

Coming up:
Obviously more physical therapy. End of October is the appointment in Denver with Dr. A. Mid November we're going to Mayo for at least two days. Day 1 will be repeat MRI of both shoulders and meet with the doctor. Day 2 will be repeat EMG/NCV aka nerve testing which is such an unpleasant test. This morning when I got to my physical therapy appointment I ran into Dr. M and was told directly from him I can schedule an appointment so we will be seeing him in October as well to get his opinion on all of this weird stuff going on. So all in all it has been a very busy, tiring, productive, validating couple of weeks and I am still so happy that I came out here.

In between physical therapy appointments my mom and I play a lot of Scrabble, cards, and Yahtzee. One of the good things about both of us is that we are easily amused. Where we are at in Colorado is beautiful and the leaves are turning all golden yellow and orange in the mountains. Since it's hard to walk long distances we oftentimes take car rides in between my appointments and just look at the scenery around us. My conclusion is that I need to move to Colorado :-)

My mom and I

Our lunch view

Physical Therapy Day 1

Yesterday morning I had my first physical therapy session. To start things off in the right direction, I bought my physio a pack of Double Stuffed Oreo cookies and said, "These are for you. You'll need them by the time you are done with me this morning". That seemed to be a good ice breaker. Fifteen minutes into my appointment I knew coming out here was already worth it. Twenty minutes into my appointment my right shoulder and neck were examined more than what any doctor in the past year has done (minus the doctor in Pennsylvania). I was taken very serious and really listened to. I was able to explain my viewpoint on what I think is going on and I finally felt like I was talking to a medical professional instead of a wall.

After recapping on everything that has occurred this past year I stood up to show my motion, and my "superhuman crazy trick" of flexing my neck way down towards the ground which drastically increases the motion in my right shoulder in every single direction. I think astonishment is a good word to describe the look on my physical therapist's face. It is pretty amazing how much I can move. It's irritating that many of the doctors I have seen this year seem to just write off the increase in motion with neck positioning and haven't really investigated why this phenomenon happens.

New discoveries were made too. After some manual testing/poking/prodding at my neck and shoulder my physical therapist noticed I had these bright red splotches appearing over the side of my neck, over the right side of my jaw, right side of my cheek, and on my chest. This is an autonomic response that the body does when nerves are very, very irritated. We left things alone to see if the splotches would fade away; they did but as soon as he started poking at me they came back. Pretty weird! We also learned I can strengthen my shoulder with light cords/bands and a 1 pound weight...don't be too jealous of my muscle strength :) There's a catch though...my neck better be flexed down towards the ground otherwise there is a ton of pain and I can't move. Towards the end of my appointment my physio wanted one of the physical therapy aid assistants to do a laser treatment. This was the first time I've ever had it done. It doesn't hurt when it's done but you are supposed to feel warmth like that you get from the sun. I felt nothing. In my afternoon appointment we realized I don't feel anything because I have diminished sensation over part of my shoulder, clavicle, and neck. Who'd a thought? You learn something new every day.

As far as the left scapula goes it is not in good shape. I am having a lot of trouble with my serratus anterior muscle which is in part due to damage to my long thoracic nerve and part of my serratus tendon was transferred to the bottom of my scapula to stabilize it. My upper trapezius muscle is hypertrophied which means it is bigger than it should be because it's taking over the job of my other scapular stabilizing muscles. There were a few exercises I tolerated relatively okay in therapy but once I got home the pain started to increase quite a bit and I am killing today. Short and simple basically nothing is functioning properly on that side at all. We are going to try a lot of muscle reactivating/training to do which is ridiculously hard. Mentally I get exactly what I'm supposed to do but I physically can't make it happen; when it does happen, a normal motion pattern feels so wrong! It's one of those things you completely take for granted unless you've injured yourself. You don't realize all the intricate things that each muscle is doing to allow you to move that body part. The swelling on the side of my rib cage is because my scapula is grating over my ribs which is causing inflammation in the soft tissue.

We tried taping my scapula. It seemed to help
during my exercises a little bit. It only stays on
during my appointment though because my body
reacts negatively when it's in a 'forced' position.
You can kind of see the swelling on my left side.

It's going to be a lot of hard work to retrain these muscles to work as one.

Posterior Shoulder Muscle Anatomy

Next plan of attack: there is absolutely no doubt that my inability to use my right shoulder is nerve related. There is so much tension on my nerves from all the scar tissue basically clamping it down. Flexing my neck increases my motion because it decreases the tension on my  nerves. Very, very light pressure causes symptoms up my neck, into face (my trigeminal nerve is getting compressed causing the facial symptoms). There is this crazy twitching/spasming that occurs over the front of my shoulder that I have zero control over. It's the weirdest thing when it happens. At the beginning of my appointment there was a subtle hint that I might have to go to Denver to meet with a doctor and by the end of the appointment I was told I have to go back to our condo and call Dr. A's office in Denver to schedule. It's kind of ironic that I am being sent to this doctor because I had an appointment set up in May 2014 but had to cancel to go see the doctor in Boston. Unfortunately, Dr. A is on vacation for 3 weeks and I can't get in until October 28th so I am on a cancellation list. We all are REALLY hoping I can get in sooner to be evaluated.

Today I am off from therapy. I've been alternating between ice and heat all day. I see a new pain management doctor this afternoon and hopefully he will have suggestions. My pain doctor in Illinois mentioned possibly doing injections to help make the pain more tolerable. We shall see what the doctor has to say. It's raining here in Colorado today so my mom has some chicken tortilla soup cooking in the crock-pot. Since it's pretty nasty out it's a good day to work on a puzzle and watch a movie. I did get to meet another person that found me through my blog though today. It's a good feeling to know that I've helped another person find a doctor that can help them. Tomorrow it's back to therapy and we shall see what the day brings.