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.

Moving my R arm in front of me (flexion)

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.

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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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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