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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