One Day at a Time

Last week was one hard week of physical therapy. The right side (side with the nerve problems) was being really problematic and we took a few steps backwards. We had a lot of problems with the nerves which caused a ton of shaking over the front of my shoulder with a burning/stabbing pain over my shoulder and up the side of my neck. With the way my nerves went hay-wired, my shoulder ended up locking in an anterior (front) subluxated position Monday-Thursday. The instability is secondary to the nerve problems. In a nutshell, the nerves freak out which causes my muscles to go into involuntary muscle contractions which pulls my humeral head (shoulder) forward. It is so frustrating when these types of things happen because we were finally seeing some tid-bits of improvements in the nerve tension and then my body decides to react negatively and we've lost the little bit we gained. Mentally it's hard because I don't understand why all these weird symptoms are happening to me. We didn't do anything different at physical therapy. Sometimes I feel like my body is just saying, "Haha, nice try but I don't feel like cooperating with you today!"  I also feel like a lost a week of physical therapy which sucks when I only have a limited amount of time out here. Each week is so precious to me.

Shoulder pulled way forward. You can see
the muscle tightness on the right side
of my neck (left side of picture)

I'm not forcing my shoulder forward by having my hand on my hip. 
My hand is on my hip to take the weight of my arm off my
shoulder. I can't bring my arm to my side, therefore, I can't get
it into a brace. If I don't rest my hand on my hip, everything just
hangs at this funky angle. The muscles on the back of my shoulder/
shoulder blade go into an involuntary muscle contraction which locks things up.

Ice provides some relief because it "numbs" the area. Getting comfortable is
non-existant when I get locked like this. I can't lay on my right side, or my back
which means I get stuck on my left side which hurts my scapula a ton. When you
lay on your left side your neck goes to the left. When my neck goes to the left,
it only puts more tension on the nerves on my right side. It's a vicious cycle. 

This week of therapy went better than last week. Part of that reason is we haven't done too much to my right arm. My nerves are still very sensitive from last week and it doesn't take much for them to freak out so we are just kind of letting them be and we'll see how things go next week. On Wednesday my physical therapist applied an iontophoresis patch. This is a patch that delivers medicine to the affected area and can help with pain and inflammation. It didn't help a ton with the pain but we did learn that my skin is super sensitive and we can't use these patches on me. One end of the patch is medication and on the other end is saline. My body is more acidic and responded negatively to the saline which left me with a burn in the shape of a heart. I don't completely get why it happened, but it did. We've been laughing and calling it my "broken heart hickey or tattoo" Take your pick. It looks worse than it is. Fortunately it isn't causing any additional pain.

Picture of the iontophoresis patch on the side of my neck.
We were teasing that I looked like Frankenstein.

4 hours later I removed the patch and had what I thought was a bruise. I texted
this picture to my physical therapist asking if it's normal to bruise and was told
only on me. 

"Broken heart hickey/tattoo". My mom and I were on our way to dinner and all
of a sudden she said, "What the hell is on your neck?" It was funny how she said it.
Yesterday I found out it's a burn

Since the right side is sort of "temporarily out of order" we have been focusing on my left side a lot between last week and this week. I was asked if I have noticed improvements since coming out here and I said in certain aspects there are improvements ex: better scapular control and a little stronger; but from a functionality standpoint I am not better. So this weeks emphasis has been working on functional movements with the left. During my afternoon appointments, we literally practice reaching for a glass and bringing it to my mouth, and moving a 1 pound weight from the left side of my body to the right side of my body using proper body mechanics. My physical therapist evaluated my left scapula as I tried to bend my elbow and bring it towards my mouth and there is something abnormal happening with my scapula preventing the motion which explains why I can't reach. It's not good to hear this but at least I know there is a valid reason of why I can't reach for things or feed myself in a normal fashion. I feel so ridiculous doing these exercises. It's such a basic motion and I get so frustrated.

One of the hardest things with the left scapula is the unknown. Hopefully within the next 2 months we will have a better idea of how to proceed with treating it. I'm not getting any younger and I don't like not having some sort of timeline. More than anything I want to finish my schooling and move on with life but it's really hard to sign up for classes when neither one of my arms are functional at the moment. We know when I try to move my left arm by myself I'm really unsuccessful and there's a lot of problems. My physical therapist said my scapular stabilizing muscles are severely atrophied which is causing severe dysfunction of the scapulothoracic joint (scapula), as well as the glenohumeral joint (shoulder). There is also the long thoracic nerve palsy. Any time I try to move my arm a couple inches in front of my body, my scapula puts pressure on the shoulder joint causing it to subluxate posteriorly (back) too many times to count in a day; however, when my physical therapists manually stabilize my scapula with their hands, I can get my arm up to shoulder level, my shoulder joint stays in place, and it is so much more functional with decreased pain.  My therapists and I all seem to be on the same page and realize if the physical therapy is unsuccessful, my only option is pretty much a scapulothoracic fusion which is a way bigger surgery than anything I've had done thus far. Needless to say, I'm busting my butt in pt and giving it my all.

This past Tuesday, I met with my pain management doctor. He thinks I have Complex Regional Pain Syndrome (CRPS). CRPS used to be referred to as Reflex Sympathetic Dystrophy (RSD). My right arm (nerve side) is the side that is primarily affected. Here's a link with further info on CRPS/RSD (link) My physical therapist contacted the physician's assistant to give her the rundown on everything that is wrong with me so she could relay it to my doctor. Some of the symptoms that I have no control over that I keep experiencing are: entire right arm is much colder than my left arm, the red splotches are more pronounced, the shaking/tremors over the front of my shoulder, trigeminal neuralgia (link) and my physio noticed my pulse is much faster on the right side of my neck compared to my left. It appears my subclavian artery is getting compressed which could be causing the rapid pulse, as well as the poor circulation to my arm. I am so thankful my therapist called them because I feel like I have somebody who has my back. Next Thursday, October 16th, I will be going in for a sympathetic nerve block. The kind I'm getting is called a Stellate Ganglion Block (link) which is located in the front of the neck. It'll be performed in an operating room with light sedation. It's an outpatient procedure. We're hoping it will help with some of the sympathethic nerve symptoms that have; it's being used as a diagnostic test too. One of the concerns I had with having this injection is that it would skew my symptoms for when I see Dr. A on the 28th. When I mentioned this to the doctor, I was told that is nothing to worry about because there is far more going on and it won't resolve all my issues. We know there is more going on with this side than just Thoracic Outlet Syndrome. The fact that I can make my shoulder functional by flexing my neck is indicative that there is definitely a problem at the neck and there is definitely a problem at the shoulder. That's pretty much the scoop for the past 2 weeks. All we can do is take things one day at a time.

The nice thing about where we are staying in Colorado, is that in every direction we turn all we see are mountains. When I walk the 5 minutes to the hospital, I look at the mountains with all the golden yellow fall leaves. Last Saturday my physical therapist recommended that my mom and I go to Piney Lake. We stopped at Subway, picked up some sandwiches and picnicked at the lake with the mountains in the background. We got a beautiful day. While on the drive we saw 2 moose; a male and a female. It was so cool. We've seen a moose every trip to Colorado except for one. We figure seeing 2 moose makes up for the one that we didn't see on a previous trip!

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.

Fun at Brookfield Zoo!

I love how the inner tube is larger than the pot of water.

How can you not chuckle? He's showing off his water goggles.

A girls got to do what she can to get semi-comfortable to play Scrabble.

At least getting a mani/pedi is relaxing. This was the first time I had both these done. Could be dangerous.