Wednesday, November 12, 2014

My Arms Have the Potential to "Fly"

Today was my last day of physical therapy in Colorado (for now). Up until today, there were only three other times that I cried in front of my physical therapists the past 2+ months. The first time was because the nerves in my neck and shoulder were freaking out which locked my right shoulder really bad. The second time was when my left scapula "flew" out to the side while trying to do an exercise. The third time was when I was having severe neck pain. When I go to physical therapy I'm always stoic; I'll wait to cry once I leave if I have to. If I cried at every single thing that hurt me in therapy, my physical therapists wouldn't be able to gauge how much pain I am in. I have a very high pain tolerance. If something happens in therapy that actually makes me cry or I walk in saying I don't feel right that is basically an "alarm" that goes off for my physical therapists to know that there is a problem here.

On Tuesday I went in and said I could barely move my head (except bring my chin to my chest). At physical therapy he tried to get me some relief but as soon as he tried to lightly do stuff to my neck my nerves went nuts which created this jittery motion over my shoulder. He had me sit up and then did a couple manual tests. Besides the obvious nerve problem, there is now concern I have upper cervical (neck) instability in addition to lower cervical (neck) instability. He stabilized the upper portion of my neck and for the first time in long time I could finally turn my head to the left and right. It could potentially explain my "two-step neck motion" to make my right shoulder move too. When I went home I tried to move my arm by just moving the bottom of my neck forward without bending the top of my neck and I can't move my arm that far. When I move the bottom of my neck forward and then bend the top portion of my neck, the shoulder motion increases. Below is video of the "two-step neck motion" with increased shoulder motion. It's a whole lot easier to just watch then me explain it. I've watched these videos too many times to count and I am in awe every single time.

video
Moving my R arm in front of me (flexion)

video
Moving my R arm to the side (abduction)

When I started crying at pt today I didn't start crying because I was physically hurting more than normal. I tried so hard to keep the tears in during my last session and I was doing good until I asked my physical therapist what his gut feeling was in regards to something surgically needing to be done. I knew what my gut was telling me but I wanted to see if his was the same. Both of us are the same and the gut feeling is that something surgically will need to be done to my neck and there's a 50/50 chance that my left scapula will need to be fused. The past 3 weeks my neck and nerve symptoms have been getting worse. I've been having to wear a C-spine collar more because I've been getting dizzy, my head is heavy, and things in my neck are clicking/cracking/popping (choose your favorite adjective). Traction still does help my neck; however, we can't do that anymore because the nerve response I have isn't worth the little bit of relief and my neck seems to feel worse the following day. If my left scapula isn't better in 2 months then we're looking at fusing it. Below is a video of my motion before anyone holds by scapula and then after somebody is stabilizing my scapula. It's considered a positive compression test.

video
L scapula positive compression test

Besides crying over the thought of more surgery I was crying because I had a whole flood of emotions going through my head that just crash landed. I'm scared, nervous, validated, sad, frustrated, happy (because I was really listened too), overwhelmed, and tired. I've been in this "medical bubble" the past few months with a ton of information being thrown at me. Coming out here was basically a gamble. It was either going to really pay off or it was going to be absolutely pointless. Before we left to come here, I felt like I had to just take a leap of faith in order to figure out what's wrong with me. It was absolutely worth coming here.  The point in coming out here to do physical therapy was to get a really, really good reevaluation. The goal wasn't to leave with an increase in motion; if that happened it was just sugar on top. Coming here was a SUCCESS! Things are narrowed down which means when I go to Mayo on Monday, the doctor can really focus on the narrowed down issues instead of looking at a ginormous list of symptoms. My orthopedic and physical therapist have been in contact with the doctor at Mayo. My physical therapist was going to email the doctor at Mayo today to update him, and let him know besides the nerve stuff he thinks there's definitely a neck problem. I received a text this evening from my physical therapist letting me know he emailed the doctor again and he reiterated I'm not crazy.

Leaving the clinic today was sad. I'm honestly leaving a bunch of friends. It's going to be extremely weird not being in this physical therapy routine and seeing my physical therapists, the physical therapy aids, and the receptionists just about every single day.  I left hugging every single one of them and exchanged emails to stay in touch. I am going to miss them.

We spent our last week here enjoying the outdoors. I'm going to miss it so much. The more I come here, the more I want to move. We were blessed with beautiful weather over the weekend. We went back to Sylvan Lake State Park and sat by the lake. This week we went for a few walks by the creek and took lots of pictures because it was snowing making everything more pretty than it already is. Technically we are supposed to leave Colorado tomorrow to start heading to Minnesota. Mother Nature has decided it was good time to drop a ton of snow on us. Depending on how things are in the morning will depend on if we stay an extra day or not. One way or another we will make it to Minnesota by Monday because we have no choice; that's when my appointment is. Monday could potentially be a huge game changer in a positive way! You can see from the videos that both arms have the potential to "fly".

My nieces will be happy that my hair is finally long enough to put in a
pathetic looking ponytail. 
Sylvan Lake

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Sunday, November 2, 2014

More Questions than Answers

Wow! Can you believe it's already November?!? It's crazy to think the holidays are right around the corner. 2014 has been incredibly busy for me and is flying by so fast!

The past couple weeks have been really stressful. I feel like a dart board with a bunch of darts filled with new information being thrown at me. There's a lot of concern that I have cervical (neck) instability at the bottom of my neck. I'm used to dealing with shoulder problems, but not neck problems. It's scary. Thursday, October 23rd I met with my orthopedic. The appointment went well and we are both on the same page. He evaluated my right shoulder with my neck bent forward and my shoulder is stable. The problem is nerve and it really seems to be stemming from my neck. I went for a MRI of my cervical spine (neck) and thoracic spine (upper back). Many might think laying flat on your back with your neck straight isn't that big of a deal but that position is hell for me. The bottom of my neck was so flared up and my nerves went crazy for the next few days. The good news is my MRI was essentially normal; I have some osteoarthritis in my neck but that's not causing my symptoms. The bad news is the MRI didn't provide us any answers. The thing with MRI though is just because the results are "normal" doesn't mean there's not a problem. I can't tell you how many MRI I have had done that didn't pick up the damage. My doctor then evaluated my left scapula (shoulder blade). As long as my scapula is literally shoved over towards my spine, and held against my ribs, my arm goes way above shoulder level. So a fusion of attaching my scapula to my ribs is still a big possibility. There was talk of transferring my pectoralis major muscle to my scapula but with having crappy connective tissue that may not work. The doctor I'll be seeing at Mayo has a lot of knowledge in this area so we are anxious for me to be evaluated by him.
I'm very thankful for this doctor
This past Tuesday, Oct. 28th, my mom drove me to Denver and we met with Dr. A, the thoracic outlet syndrome specialist. I was with him for almost an hour. I might have Thoracic Outlet Syndrome (TOS) but that is not my main problem. I was told traction doesn't generally alleviate symptoms in patients with TOS. I get instant relief. Also, neck motion isn't typically affected a ton like it is with me. The doctor said if he decompressed my nerves, it would not restore my motion and function because he thinks the primary problem is stemming from my neck. He also said if I ended up with surgery by him at some point, I would need to get clearance by an EDS (Ehlers-Danlos Syndrome) specialist because he would remove my scalene muscles. The scalenes are located on the side of the neck. His main concern is if he removed those muscles he would make me worse because the scalenes are neck stabilizing muscles. If my neck is unstable that would be a really big problem. Dr. A is also concerned I either have a nerve avulsion which is where the nerve is torn from its attachment to the spinal cord (you can have a complete or partial tear) or he's concerned I have a really, really bad stretch injury. He wants me to go for another EMG (nerve test) because there were nerves that were not tested last year, and he wants me to go for a muscle block in my scalenes and pectoralis minor muscle. I talked with my physical therapists this week and we are going to wait on those tests until I get to Mayo. We don't want things to be skewed when I meet with the doctor. Dr. A told me I need to get to Mayo and he's hoping they will be able to help me. Since we were already in Denver, Dr. A wanted me to meet with a brilliant physiatrist (rehabilitation medicine physician). So we met with that doctor the following day.

Maybe I should start writing brochures on hospitals throughout the United States 
On Wednesday, October 29th, I had my appointment with the rehabilitation medicine physician. My appointment wasn't until 2:30 so in the morning we went to the Denver Zoo because it is only five minutes from the hospital. It was a really good way to spend the early afternoon. The weather was perfect, the zoo wasn't crowded, and the animals were active. It was a good distraction before going to the doctor. We try very hard to offset some of the medical by doing something a little fun like going to the zoo, out to eat, for a drive, or just sitting outside playing cards. It's so important mentally to try to get a "medical break" because you will go nuts if you don't.

What I might look like if I had elephant ears
The size of my head compared to an elephants'
One of my favorite camera shots I took at the zoo.
I can't wait for this right arm to work so I can draw it!
After the zoo we went to the hospital. The appointment was long. Before meeting with the doctor I met with a social worker for about 40 minutes. At this clinic they want to know how you're doing as a whole person; they don't just care about the injuries. Anyone that has dealt with some chronic medical condition knows that it can be REALLY hard to let your guard down. It's basically the first time in a year that I wasn't rushed at a doctor's office and I could really take my time to explain what has been going on these past 2 years. After meeting with the social worker it was time to meet with the doctor. I was with him for at least 90 minutes. He was great and listened so well. He works a lot with amputee patients, trauma patients, and patients with neurological injuries. In his 40 years of experience he has never seen this weird neck thing I do to increase my motion. He very nicely told me I'm a "Kinesiological nightmare". Obviously that's not a good thing to hear but it does kind of have a funny ring to it. Basically this doctor is in agreement with the Thoracic Outlet Syndrome specialist. I very well could have TOS but there are at least 2, 3 or more other issues going on. He too is really concerned with my neck. If I were receiving treatment by him, I would see him every 2 weeks and in between those appointments I would be meeting with occupational therapy, physical therapy, and massage therapy. We would work a ton on neuromuscular retraining. My brain has completely forgotten how to move my arms. It's a long tedious process. This doctor too told me I need to get to Mayo. So basically its been a ton of information, a lot of questions, but no definitive answers to my problems.

One of my favorite things to do while in Denver is watch the sun set behind the Rocky Mountains. It's a view I can't see back home in Illinois so I don't take it for granted. After both appointments on Tuesday and Wednesday we stand at the open field and just look at the sky and take pictures. It too, is a good distraction.

It's weird looking at the mountains knowing I've been living in them for the past
2 months. I absolutely love it there. 

At the end of the day every single doctor and physical therapist is in agreement that there's a big problem here and I need to get to Mayo. Both doctors on Tuesday and Wednesday made a point of telling me what's happening is very real and I am not crazy. I know deep down that coming out to Colorado was absolutely the best move before heading to Mayo. The doctor at Mayo already has a heads up about me. My physical therapist talked with him on the phone, and my orthopedic here in Colorado knows him well and will be contacting him. My physical therapist said the doctor at Mayo said he has seen a couple similar sounding cases, has some ideas, and is looking forward to seeing me to see if he can help. Fingers and toes crossed that he can!!! I'm sick of all the heavy pain, and dealing with my arms and neck not functioning properly. It is getting old really, really fast.
My sister Kelly mailed me some Chicago Blackhawks stick on tattoos.
I put one on each arm, the middle of my chest, and one on each shoulder blade.
My physical therapist is a Boston Bruins fan so no matter what direction I was
facing he saw a Blackhawk logo. I also wore my "tickets to the gun show"
tank top that my physical therapist gave me. Have to have some fun on Halloween!
This coming week is physical therapy Monday-Thursday. We are driving back down to Denver after pt on Tuesday to meet with an occupational therapist who specializes in working with patients with severe functional impairments. I'm really anxious-excited to see her because I'm hoping she will have suggestions to make activities of daily living a little easier. The following week we are leaving Colorado on November 13th and mom will drive me to Minnesota to get to Mayo. My appointment is on November 17th. That's a HUGE appointment. We are banking on this doctor being the one that will be able to help me. Until next time, I hope everyone has a great day. 
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Friday, October 10, 2014

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!









Friday, September 26, 2014

"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




Tuesday, September 9, 2014

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.

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.

Sunday, August 31, 2014

The Colorado Scoop

Well talk about a complete change in plans pretty much overnight. It's a good thing my family and I have learned to just roll with this medical nonsense and we somehow manage to make things work in the end. Last update I mentioned how the next step (so we thought) was to go Mayo in Minnesota to meet with an orthopedic who deals with complex tendon transfers to resolve functional disabilities. The doctor in Boston thinks going there is very much worth my time so I can have both my shoulders, scapulas, and neck evaluated by a team of doctors (orthopedics & neurosurgery) who specialize in very complex shoulder injuries and brachial plexus problems. I called earlier this month to schedule an appointment but was told I need to send my medical records in advance so they can be reviewed to determine if the doctor is willing to see me. Those records will be sent out Tuesday and it'll take about 2 weeks to get a call back. Gotta say, it's been loads of fun gathering all my shoulder records and trying to organize them in a way that makes it somewhat easy to follow...not! Have fun reading and attempting to understand my book of records without me there to explain shoulder doc!

Now 3 weeks ago there was an incident that occurred with my right shoulder. I had an itch at the bottom of my back on the left side so I moved my right arm behind my back to scratch it. Yea...who'd a thought that would be a bad idea??? At that, there was a ridiculous amount of pain, a charlie-horse sensation over the back of my shoulder joint and side of my shoulder blade which was accompanied with a burning/stabbing/stinging sensation down the back of my arm radiating intermittently into my hand. I had zero motion at the shoulder, elbow motion only to 90, and my hand/forearm was all discolored. As luck would have it, this incident happened on a Saturday and with the extent of shoulder problems I have, going to an ER is not an option. So 3 days later on August 12th I managed to get in with my local orthopedic. We're not sure what, but something moved out of position and it wasn't stemming from the shoulder joint. He gave me a lidocaine injection and thankfully after a couple days my right shoulder went back to its "normal". At my appointment I voiced with my doctor how I am completely fed up with being sent from doctor to doctor all over the place for the past year without anybody proposing any sort of treatment, like physical therapy, because I am getting worse. I also told him how there isn't enough time to explain all the issues going on and every doctor is fixated on all the surgery when I'm repeatedly saying the problem occurred September 22, 2012. After further discussion we decided going to physical therapy before going to Mayo would be best so I can get a really good reevaluation.

The physical therapists I'll be working with are the same ones that worked with me last year. Three of the doctors that I see felt I should go back to CO because 1. those therapists are the ones that worked with me most recently so they will be able provide a more accurate comparison 2. it's an intense physical therapy program and 3. to see if getting me back in a climate that is less humid and at a higher altitude provides some relief. I'll be going to pt 5 days a week, 2 times a day. It is going to be a million times harder than last year because my muscle(s) weren't detached from my left scapula and it wasn't unstable like it is now, the L shoulder joint wasn't as unstable, nerve symptoms I have on my right shoulder/right side of neck are a lot worse now, motion is pretty much nonexistent, and my neck has limited motion and is grinding/cracking/popping. My mind is at ease knowing the orthopedic department is one floor above my head in the event we run into a problem. My goals going into therapy this time are different than last year. Last year I was hopeful that I was going to get better and be more functional while this year the goal is to get in the best "shape" possible, figure out what works/what doesn't/what we have to work with so that when I go to Mayo that doctor will hopefully have a very complete recent understanding of how my upper body is functioning. The good news is my pt benefits aren't as crunched this year as they were last year. When I get back home to Illinois in November, I will still have pt benefits available to work with my longtime, trusty, IL physical therapist during November and December.

So at that, two and half weeks ago I was sitting in my doctors office being told to go do therapy in CO. There's 7 people in our household and then there's my brother and my nephews who live in their home. I'm very blessed to have a very understanding, supportive family who would do anything for me. I know taking my mom with me for two months is hard on everybody!! During the past 2+ weeks it has been a mad dash trying to get everything to all work together. Happy to say day 1 is a success. My mom and I are now relaxing in our hotel room in Iowa getting ready to eat our dinner. I'll get an update posted once physical therapy starts. My first physical therapy appointment is September 8th. The morning appointment will be the initial evaluation and in the afternoon who knows what. Thanks to everyone for all the support!

Thursday, July 31, 2014

Doctor Appointment July 31, 2014

Another long awaited doctor appointment and once again I am being sent to an out of state doctor due to the complexity of all the various shoulder/scapular issues. In the near future I will have to go to Mayo Clinic in MN for a consultation for both shoulders/shoulder blades. My joints are basically working against each other so if you do work on the shoulder joint it is going to exacerbate symptoms to the shoulder blades, and vice verse, because neither is in good enough shape to take over the demands of the other. We know both sides do need surgery. It is now just a nightmare of trying to figure out what needs to be done to create less pain and increase function. We would also have to figure out which side makes more sense to have done first. Lord knows I would choose my left but when I think about all the demands I keep talking myself in circles.

We talked about possibly fusing the left shoulder blade but the doctor isn't comfortable committing just yet without me seeing the doctor at Mayo. Mentally, I know in the long run it is best to go for the opinion, but physically I wish I were in surgery right now. All this travel from state to state, and doctor to doctor over the past year especially, is hard on the body and I am getting worse as time goes by. I just want treatment to start already. I am really hoping it isn't a long wait to see this other doctor.

The increased motion in all directions with my neck bent on the right side definitely got a look. I didn't get any answers for why it happens. We were just told several times the next step is to go see the doctor in Minnesota for his opinion. The doctor I will see specializes in resolving functional disabilities by doing a lot of "crazy complex tendon transfers", allografts (cadaver tissue), and he also deals with patients who have connective tissue problems as well as problems with their brachial plexus. I was told he is compassionate and enthusiastic so hopefully this holds true; I have met a lot of arrogant not nice doctors over the years.

The shoulder evaluations always hurt a lot so today we are just taking it waaaay easy. Mentally we are whipped. There is so much energy that goes into preparing yourself for these types of appointments and it is always hard when you get news you don't want to hear. My mom is more optimistic than me. I'm more scared about being stuck like this and she reminds me that all is good because you know what the next step is and he didn't walk out on you; he is willing to help but he just wants other opinions first. She is right but it is still soooo frustrating.

We fly back home on Monday and we are going to do our best the next three days to try to not think about all the "what ifs" and enjoy exploring Boston and listening to their accents. Everyone knows I love Halloween and the movie Hocus Pocus so we are going to stop in the town of Salem one of these days. As long as we hit there I will be a happy camper. Thank you all for the thoughts, prayers, well wishes and encouraging words. They mean a ton!