2015: Let the "Fun" Begin

I've been contemplating on what I should write and I've decided to write a current update because I'm having surgery next week and writing is a coping tool for me; I know I'll "feel better" once I get it off my chest.

Warning to the squeamish types: there are 2 pictures near the end that might not be your cup of tea. It's NOT blood & guts; just a scapula shifted out of position. I'll post another warning when you  get closer to it. 

As I reflect back on 2014 the first thing that comes to mind is: what a long, hard, crazy, exhausting roller-coaster year!! It was a year full of so much travel seeing physicians that I had been referred to throughout the United States. We traveled approximately 7,542 "medical" miles! These miles were divided between trips to Pennsylvania, Massachusetts, Colorado, Minnesota, and of course, Illinois. Talk about a lot of flying and driving just to see a doctor!!

When 2014 started I thought it was going to be a year of moving forward and having the surgeries that were proposed in 2013 done. Instead of moving forward though, it seemed like there was some higher power constantly putting obstacles in my path so those surgeries would not happen. At the time I was so frustrated and angry at my situation. All I wanted was to have the surgeries done so I could begin the rehabilitation process to regain some of my arm function and get my life back. When you're living with a chronic medical condition 24/7 and all the various challenges and pain that goes along with it, it's really, really hard to see how things could possibly work out because you're too close to the situation. When doctor appointments don't work out, my family and I constantly tell ourselves, "That doctor wasn't the one meant to help me." When I look back now on how all the events unfolded in 2014 I know I had somebody looking out for me the whole time. It's kind of an eerie feeling because the two big surgeries that I just wanted to get done and over with would have never worked.

http://www.pinterest.com/pin/362047257519360343/

Fast forward to November 2014. I had finished doing two and half months of extensive physical therapy in Colorado trying to narrow down what is wrong with my neck, upper back, both shoulder joints, and both shoulder blades. It was now time to head to the fourth state to meet with yet another doctor; this time we were off to Minnesota. I can't begin to express how scared, anxious, and nervous I was. I felt so sick the day of appointment due to the nerves.

November 17, 2014
Total game changer- Thank God for Dr. E! He has seen 6 other patients similar to me. All 6 are female, have Ehlers-Danlos Syndrome (EDS) or a cousin of EDS, are tall/thin, were once very athletic, and problems started at around age 16. It's a very difficult problem to treat and it's really hard for me to put into words what the issue is. In layman's terms, it's a very, very, rare, messed up/altered muscle activation pattern that Dr. E has only seen in this category of patients. The altered muscle activation pattern causes the scapula (shoulder blade) to "dance" because there is no stability. This causes both scapular and posterior (back) shoulder joint instability, decreased strength, and very limited motion. The first step of trying to treat this was to have botox injections into my trapezius and serratus anterior muscles. It was supposed to take about a week to kick in, would peak at around 3-4 weeks, and would take 3 months to be out of my system. As luck would have it, I reacted completely opposite of what the botox was supposed to accomplish. Things started feeling worse on day 3. Instead of relaxing my muscles it made my muscles ridiculously tight, decreased my motion even more, and skyrocketed my pain. I kept trying to tell myself it's only been X amount of days/weeks there's still a chance it will get better...time would tell. In regards to my neck, there's a major problem and I have "extreme hyperlaxity" in it. A neck brace was ordered and we're trying to see if it will stiffen up my neck. I don't think it's stiffening too much but it does help with some of my symptoms which I'll take. In regards to my right side it too has this weird muscle activation pattern, but it also has some weird nerve problem that is still being investigated.

When we arrived home from Minnesota, Thanksgiving was literally just a few short days later. It was the first time my mom and I had been home since August. It's kind of funny that the only picture that was taken of me on Thanksgiving was when I was messing around with our dog Daisy and not with anyone in my family.

I tried to get it so it looked like she had on a babushka :)

Apparently my nephew thinks my neck brace makes a good mask too :)

In December I was really not feeling well at all. Between the botox and the climate change my body was reacting negatively. My joints in my upper torso were more unstable than they were when I was in Colorado. When I was in Colorado I felt better and had even gained almost five pounds which was a very good thing. I've been trying to put more weight on. Within a few weeks of being home I lost the weight I gained, plus some. I emailed Dr. E to see when I was supposed to come back for a follow-up appointment. He said in January or February depending on how I was doing. I scheduled an appointment for January 7th. I had called mid December to see if I could get in sooner and the good news was there was a same day cancellation! But wait....the bad news....the appointment was at 4 o'clock and it was already 11:30. I didn't have enough time to get from Illinois to Minnesota. Did you really think I would get in sooner?..haha that would be too easy :) Too bad we don't have those tunnels like in Super Mario that transport you quickly from one location to another :) That could have been pretty convenient.

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Me, my niece, and my dad at the holiday zoo lights.
There's no way I could walk the entire zoo with all the
upper body stuff going on so we rented a wheelchair. It's
way more enjoyable to be pushed around than to be really
stubborn and hurting a ton trying to walk.
Also, scarves work really, really well to cover up the neck brace
if you're self conscious about it!

On Christmas Eve I got the most amazing tea mug from my brother and sister-in-law. I use it just about every day and every time I do, it always makes me smile.

So true haha

My favorite picture of my nephew Justin. His facial cracks me up.

January 7, 2015

We were back at Mayo in Minnesota meeting with Dr. E. I was reevaluated and the botox did in fact make me worse and he had never seen any reaction like it before. Gooooo figure! My parents and I were told I have a lot of problems and despite all the previous surgery I've had, surgery is needed. Instead of going into the surgery with the mentality of, "I'm going to fix everything" Dr. E made it very clear that he only wants to fix one problem at a time to see how I respond. During this surgery Dr. E is going to be attaching an allograft (cadaver) tendon between my scapula and my spine. We're hoping this surgery will help me just to get my arm to shoulder level. The allograft will medialize my scapula and keep it in internal rotation (basically if you were to shove my scapula in towards my spine). My biomechanics are completely screwed up and this is completely opposite of normal. Dr. E doesn't know why this is the only way I can move my arm but the point is it does move this way so we have to help my body so it can. My mom asked Dr. E, "What do we call what Meg has?" and Dr. E smiled and said, "The Megan Syndrome". I officially have my own category and I am not the same as the other 6 individuals. I'll be braced 6-8 weeks after surgery full time. The good thing is if I don't respond well to the surgery, it's easy enough to cut the allograft out with local anesthetic in the office and Dr. E has backup plans. 

My new custom brace that took almost 2 hours to make.
It's nice because there's no weight on my shoulders or neck.
My sister bought me foam so I can put it between my ribs and the brace.
My ribs don't like the pressure of the brace at all but the foam at least
gives a little bit more padding. It's pretty gross feeling my cartilage
slip over my ribs when I move.

To the squeamish types, the 2 pictures are below this paragraph...

So here we are today. In exactly one week I will finally be having my surgery on January 28th. I've tried everything under the sun for the past 2 years trying to get better conservatively and it's not working. My symptoms are getting worse, I've lost my arm motion & strength, my neck is worse, my pain is off the chart, I rely on so much help, and I've dropped 15 pounds due to the pain. I'm happy to finally have a treatment plan in the right direction. I'm not really nervous about the surgery itself. I'm more nervous about how my right side is going to react and how I'm going to get through the next few months because neither arm will be working. One will be immobilized and the other can't move at the shoulder; it's all elbow motion. I'm going to have to learn to accept a ton of help. My family is up for the challenge; wish them luck.  

This happened last week when my mom and I went
to run a couple errands. When we got home I had to
go lay down. An hour went by and I took my shirt
off to have my mom apply cream and this is what we found.
My scapula shifted waaaay out of position. No wonder I didn't feel right.

This is what happens when I try to "push" the wall.
It has been a very long week since this happened.
I've had to immobilize my arm every day. 

You might be asking how did this happen? How did I injure myself? The primary diagnosis in my chart is Ehlers-Danlos Syndrome which is causing all the laxity, which is causing all of my problems. I didn't sustain any specific injury and I don't have some amazing heroic tale to tell. It comes down to faulty tissue. The good news is I have a doctor who is totally invested in my case and has amazing communication skills. I have a doctor who believes my crazy symptoms and doesn't think this is all in my head. I have a doctor who is optimistic that he will help me get more use of my arms again; it's just going to be a long road to get to that point. I feel really good about working with Dr. E. 

The other day my nieces, nephew, sister, mom and I all made a pie. There was
a lot of love put into it and it tasted really good. We made a s'mores pie. 

I don't know how soon I'll be writing after I have my surgery. The best way to get current updates is to go onto Facebook and "Like" Meg's EDS Medical Journey My family will be posting updates there.  

My neighbor posted this quote yesterday and I found it very fitting

Stability at Last!

Warning to the squeamish types, there are 2 graphic surgical pictures towards the end. I'll write another warning when you get close to them...

October 17, 2012

The flight to Denver, Colorado to go see Dr. M was surreal. So much had changed essentially overnight. It went from telling Dr. K in Illinois, "Hey, I think I need this particular surgery done" to him agreeing and telling me to go see Dr. M. Now here we are in Denver and in less than a day I will hopefully be finding out how to proceed forward.

The drive to Vail was like nothing I had seen before. I've never been on such twisty/curvy roads completely surrounded by mountains. It's definitely different compared to flat Illinois. One thing we didn't take into account at all was the altitude. That one came back to haunt us. In Illinois we live at 850 ft above sea level; Vail is at 8,150 ft above sea level. We were all sick from the altitude because we did nothing to prepare. With the way I love Colorado now you would never know that I absolutely hated it the first time I went out there.

The following day was my appointment. My parents and I looked like a bunch of zombies. The altitude really hits us. I'm sure when Dr. M walked into the room he was expecting rather happy people because my surgeons had already talked to him. Instead, Dr. M walked into a room of people that looked like the walking dead. It was awful. Looking back on this day we all laugh at it. When Dr. M tried to move  my shoulder a couple inches it started to subluxate. The amount of motion I had was essentially nothing. After the exam Dr. M started talking about various stabilization surgeries. He started saying how usually after the amount of stabilization surgeries I've had done they would normally do a shoulder fusion; at that point I interrupted him (completely out of character for me) to tell him I am not a good candidate to have a shoulder fusion due my scapular (shoulder blade) problems. He then started to mention the fusion again, and I interrupted him to which he said, "Please do not interrupt me". I apologized and he then said he wouldn't do a fusion on me because of my scapular dysfunction. So instead he suggested doing an anterior capsulolabral reconstruction with allograft; the same exact procedure I had printed off and brought to Dr. K. As a side note, I emailed Dr. M later that afternoon after my appointment to once again apologize for interrupting him. It was SO out of character. All is good; no hard feelings :)

The day after my appointment we decided to drive Independence Pass to the Continental Divide which has an elevation of 12,096 feet. It was BEAUTIFUL! It was also really, really, windy, and cold up there! The brace that goes around my waist didn't fit over my winter jacket and it was too windy/cold to not wear a coat. One of my "tricks" that I do to this day is wear shirts or jackets that have pockets on the front. That way I can stick my hand in my pocket which helps take some of the weight off the shoulder and it helps support the arm; if I don't have pockets then I will pretty much always have my arms crossed on my stomach.

My dad and I.
Independence Pass- Elevation 12,095 ft- Continental Divide

My mom and I

Me and dad

After arriving home from Colorado it was crunch time to get things done. Surgery was scheduled for November 9, 2012. I worked ahead in my calculus class to try to make it easier after surgery. We also had to throw a big birthday bash for my grandpa because he was turning 90! It was such a great day. We invited all his family and two of his longtime friends. He had no idea that all these people were coming. The look on his face was priceless. We took many pictures and have many great memories of that day. Since his birthday is in October, and he loves sports, we had a "Spooky, Sporty, Surprise 90th Birthday Party".

Part of my family :)

November 9, 2012
Next thing I knew it was surgery day. This shoulder surgery was by far the most painful surgery out of all the shoulder surgery I've ever had. Looking back I really think the awful recovery was due to the nerve problem I have because that didn't get diagnosed until March of this year. At the time I had the anterior capsulolabral reconstruction with allograft to stabilize my right shoulder we had no clue there was any sort of nerve issue going on. Logically it made sense that my shoulder barely moved because of the instability. Now I know that isn't the case because my arm motion is the same now as it was the morning of surgery two years ago; it only moves if my neck is bent way forward.

Motion morning of surgery 11/9/12

My motion today

2 GRAPHIC PICTURES BELOW

Even though my arm still doesn't move the way it should, I am so thankful it is at least stable. During surgery they put 4 anchors and 2 screws in to secure an allograft (cadaver) tendon in the front of my shoulder. It's the only surgery that has lasted longer than 4 months on me. I am over two years out from this surgery and it is still pretty stable. 

Waiting to be wheeled back to the operating room

The allograft tendon secured to the glenoid

The white in the shape of a backward C is the tendon that's stabilizing my shoulder

Definitely a hard recovery

As I've said several times in previous posts Colorado is beautiful. Below is the view from my hospital room. People pay lots of money to get that view from hotels; who knew you just had to have surgery and be inpatient?

During my stay in the hospital is the first time I met the the physical therapist that put my protocal together for when I would start rehab. Who knew I'd end up spending two months in 2013 and then two months this year in Colorado working with him. Between my physical therapist here in Illinois and the ones in Colorado I have a great team. I don't know what I would do without them.

One week after my surgery it was time to fly home. Physically it was the hardest flight ever. To anyone that has to fly on an airplane after surgery I would recommend bringing pillows so you can prop. It was SO hard to get comfortable! Landing was the worst part of the flight because of all the pressure that's put on the body. Even before this surgery I always dreaded the landings because my shoulders would shift out of place.

The landing

By the time we made it home I was beat. My bed has never looked so appealing!

Too bad I couldn't bring the Colorado view home with me to Illinois