Wednesday, January 21, 2015

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.
http://www.strapya-world.com/products/68910.html
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 Shoulder & Scapular Journey My family will be posting updates there.  
My neighbor posted this quote yesterday and I found it very fitting

Tuesday, December 23, 2014

Trust Your Gut

February 2013

The weeks to come after arriving home from Colorado were filled with much activity. As expected there was a lot of physical therapy trying to rehabilitate this right shoulder but there was also a lot of apprehension. The cortisone injection Dr. M gave me February 1st wasn't providing a lot of relief. I had to force myself to ditch the shoulder brace when it was almost March. I was still getting the sharp pain and couldn't move my arm more than a couple inches; however, I figured I would "get used to it" like I have with other pains in my body. Dr. M said if things weren't improving in physical therapy after 3 weeks the next step would be doing an arthroscopic surgery to take a look in my shoulder to see what was going on. Instead of doing 3 weeks of physical therapy I ended up doing 9 weeks. At 9 weeks my motion wasn't improving and I was still having a lot of issues. I contacted my medical team in Colorado and the plan was to have me come out in April for 2 weeks to meet with physical therapy and with Dr. M.

The pictures below are from March 6, 2013. Almost four months after surgery and that's the amount of motion I had with the "help" of the cortisone. 

I could/still can only move my arm this far
To this day, I can only raise my arm this high before I get the sharp/stabbing pain
I took the semester off from school because I had a ton of rehabilitation ahead of me
The lack of motion makes it really hard to do basic functional tasks...
As if dealing with the right side isn't enough, the left side has a whole list of problems too
Even though it was really, really difficult with all of the medical stuff going on, there were other things happening in my life to look forward too. It's these things that basically help give me the motivation to keep plugging along one day at a time. Once again, you have to incorporate happy things into your life. For me the happy/fun things are the reminders that there is more than just medical stuff in my life.

On March 9th my mom and I took my nieces to see their first professional soccer game. We had gotten them tickets as a Christmas gift and it was a much anticipated event. Both of my nieces played soccer, and before I became injured I was a soccer player; needless to say my mom had a lot of practice cheering us on (my dad too for that matter). We had a lot of fun at the game.

My mom and I. We made it to the stadium!
Waiting for the game to start with my nieces. 
A surprise visit from the mascot Sparky
March 22, 2013 was such an AWESOME day. My nephew Justin was born! Now I have two nieces and two nephews. I can't believe he is going to be two years old in just a few short months already. They sure don't stay little long and time sure does fly by!
My nephew Justin who is such a sweetie. If you have arm/shoulder issues
prop with pillows if you have too to make holding something easier 
In April my mom and I flew back to Colorado to follow-up with my medical team. Our initial plan was to meet with the physical therapy team for one week and then the following week meet with Dr. M. April 8, 2013 was day one of physical therapy. I told my physical therapist I will try to do whatever he wanted because I wanted him to see that there is something wrong. After my first appointment he was not pleased with my range of motion 5 months out from surgery. I tried doing various shoulder exercises and there was sharp pain and my arm wouldn't really move. The only good news was I did have a little strength which showed my arm had potential. During my second physical therapy appointment that day, my shoulder shifted forward twice and my physical therapist had to manipulate it back into place. Later that day I received a call from the clinic that my appointment with Dr. M had been moved up to the very next day.

April 9, 2013: I met with Dr. M and he reviewed the MRI images of my right shoulder that were done before the appointment. Again, nothing really showed but something was obviously wrong. Dr. M decided surgery was necessary. I asked when he thought I would be having the surgery and his response was, "Tomorrow." Talk about a quick change in plans!

April 10, 2013: Surprise surgery day. This was not on my list of "Things to do" for this week at all. During surgery a loose suture anchor was found. I had been saying since January when the pop in my shoulder happened that it felt like an anchor had popped because it was similar sensation to the two previous times. I was told it would have shown on MRI...it didn't. Good thing I was adamant that was something was wrong, and I trusted my gut. Surgery also revealed there was tearing of the allograft, type I SLAP tear (partial tear and degeneration of the labrum (cartilage)), and the arthritis had progressed further in areas. In November 2012 I had diffuse grade 2 and grade 3 arthritis on my humeral head and glenoid. Five months later I had diffuse grade 3 and grade 4 arthritis (there are 4 stages of arthritis with stage 4 being the most severe. There is loss of joint space and you're bone on bone...just what every 23 year old wants to hear..not). I also had evidence of adhesive capsulitis which is commonly referred to as frozen shoulder. During surgery they did manual manipulation, extensive glenohumeral debridement (cleaning out of the shoulder joint), subacromial decompression, subcoracoid decompression, subcoracoid bursectomy, as well as multiple deep tissue biopsies. It was the first shoulder surgery that I ever had that didn't involve a big open incision; it was done strictly arthroscopically (tiny incisions looking in the joint with a camera). Honestly, recovery was not hard at all. In comparison to my previous surgeries it was a piece of cake. It didn't even feel like I had surgery even though Dr. M said he did a lot of work in my shoulder. From a pain perspective my left side hurt a ton more than my right (surgical side)...for the time being.
Waiting to be wheeled back to the operating room
Pictures of the inside of my R shoulder joint
Physical therapy started the very next day after surgery. I went two times a day for the next week and a half while I was in Colorado. While we were there, 16 inches of snow occurred in one day! It was so pretty. We didn't have to drive anywhere in the snow so we enjoyed it even more.
Very pretty, isn't it? 
Fortunately with this surgery I didn't need to wear the brace long. It was worn
on an "as needed" basis. We went for a short walk to the creek so I just stuck
my hand in my jacket pocket to act as my "brace".
Sure enough this trip to Colorado had come to an end and we were back home in Illinois. We were home in Illinois just long enough to pack and turn around to head back to Colorado and stay for a little over two months to do a ton of physical therapy and see if we can get these arms functional. Who knew those next 2+ months was only the beginning of figuring out the "beast" that lives in my shoulders...

Wednesday, December 17, 2014

Uh-oh...POP!

January 2013

A turn of events was soon to happen at the end of the month and I would be heading back to the wonderful state of Colorado for medical reasons (hopefully one day it will be for going on vacation). I was still in the shoulder brace from surgery on November 9, 2012 and physical therapy was soon to start. My doctor and physical therapist in Colorado extended the time they wanted me in the brace; usually you'd wear the brace for 6 weeks but I had to wear the brace full time for 10-11 weeks and then I was allowed to slowly wean from there. Since my prior history with shoulder surgeries doesn't have a good track record my medical team really wanted to make sure my tissue had time to heal. At this point in time I was still labeled as "collagen deficient" because the possibility of having a connective tissue disorder was supposedly ruled out in 2007. Dr. M suspected there was something more going on though so he implemented more precautions for after surgery. Normally with all the prior shoulder surgeries I couldn't wait to get out of the brace; however, this time was different. I physically couldn't get myself out of the brace.

When physical therapy started it was excruciatingly slow and painful. Red flags were going off in my head because I had never experienced this before. My Illinois physical therapist tried doing passive range of motion and he could barely move my arm without me having this insanely sharp/stabbing pain over the front of my shoulder; interestingly enough it's the same exact pain that I still have to this day. We tried reclining me in various positions on the table to see if that helped and there was no luck. My shoulder was so weak and killed. The weight of my arm was too heavy so I stayed in the brace whenever I was out and about; at home I just propped with pillows. As much as I love my physical therapist I dreaded going to therapy because it never ended well for me. Every time I left I would get in the car and cry from the pain. When I would get home I would put more ice on and go lay down. As the weeks went on there were tiny improvements but nothing to jump up and down about. I could go a little longer without the brace on but my gut still kept saying there's a problem.

When I woke up on Thursday January 31, 2013 I thought it was going to be just like any other ordinary day. Little did I know that evening I would be on an airplane flying to Colorado. I went to physical therapy in the morning and things were going as well as can be. We tried working on flexion (moving arm in front of you) with my elbow bent. We did active assisted motion (me moving my arm with the help of my therapist). Whenever we work on any sort of motion my physical therapist always has at least one hand on my shoulder to help give it stability. There was sharp pain every time we moved my arm but at this point my mindset was it's going to hurt no matter what. When we tried to move my arm forward all of a sudden there was a loud, audible POP! I felt my arm slowly drop down by my side with pain, my physical therapist's eyes were wide, and I started to cry. I knew something bad had happened because I am not one to cry in the middle of physical therapy. My physical therapist walked away for a couple minutes so I could compose myself. When he came back I told him to continue. I needed to know if it was the type of pop that would provide relief or if it was the type of pop where something bad had happened. Unfortunately it was the the type of pop that something bad had happened. I was concerned. It killed to move my arm and it felt like an anchor had popped. It was the same exact sensation that I had in the past when I've had anchors pop on me.

Fast forward a few hours and the next thing you know I'm on an airplane heading to Colorado. We had called Dr. M's office after my physical therapy appointment and there was concern something may have happened to the graft so they ordered an MRI and I would see Dr. M the following day. Shortly before we hopped in the car to head to the airport the staff in Colorado had called to tell us that Dr. M had something come up and wouldn't be able to see me. We already had bought our airline tickets so we were heading there no matter what. We decided I would be evaluated my his fellow instead. The following day was February 1st. My mom drove from Denver to Vail. As luck would have it, it decided to snow. Mountain driving is very, very different than driving in Illinois.

It's pretty with the snow
The yellow sign on the right says "Avalanche Area". It's a sign that
you will NEVER see in Illinois.
After my MRI I had my appointment with the fellow. My MRI didn't show anything too concerning. I told the fellow that it felt like an anchor had popped and I was told it would have shown on MRI. I disagreed because I've had an anchor pop twice in this shoulder and it never showed on MRI. The fellow tried to examine my shoulder and the same sharp pain kept reoccurring. He tried telling me he thinks I'm hurting because I'm guarding. I completely disagreed. As we were leaving my mom called my Illinois physical therapist and had the fellow speak with him. After talking to my Illinois physical therapist the fellow told me that he wasn't sure what was wrong with my shoulder and he was going to call Dr. M. I received a phone call and Dr. M was going to come back to the clinic to see me later that day.
Taking a break before heading to see Dr. M 
At the appointment with Dr. M he made a point of telling me that he came back just to see me. I was greatly appreciative and it was so nice of him. Dr. M gave me a shot of cortisone in the shoulder. At this point there was no definitive course of treatment. It was more wait and see what happens over the coming weeks. If I wasn't doing better in 3 weeks Dr. M said he might do an arthroscopy to look inside the shoulder joint to see what's going on.

After my appointment with Dr. M I met with the physical therapist to see if we should modify any of my physical therapy program at home. This was the first time that I had worked with this physical therapist; the first time I met him was in my hospital room after surgery in November. At therapy I remember going through my surgical history with him. He looked at the incisions on the front and back of my shoulder joints and I had chimed in, "Don't forget the two over my shoulder blades". The tank-top I had on covered my shoulder blades so he moved my shirt over and said, "Wow!" I laughed and said it's too bad I don't have some awesome story of how I injured them. We then proceeded to talk about all sorts of various tattoo ideas I could get so the scars were less noticeable. I still chuckle every time I think about this first visit. My therapy program didn't change too much. He wanted me to focus on isometric exercises to strengthen the shoulder with my physical therapist providing added stability with his hands which is a lot of what we were doing already. At this point he thought the issues I was having was due to muscle weakness. I thought it was contributing factor but the not the main problem. Time would tell over the coming weeks. Before I left he taped my shoulder up to see if that would provide any relief due to the added support and stability.
The tape job that the physical therapist did for me. It did help some.
I really noticed it when I had the brace off. Unfortunately I couldn't
wear the tape too long because adhesive and my skin don't mix well.
After my appointment at physical therapy it was time to drive back to Denver. We learned a very important lesson that day. When you look to the east and you can't see the mountains because it's all foggy...don't drive! It was the scariest drive ever. My mom and I didn't talk at all. It was snowing really hard. When we were in the valley the driving was okay but as soon as we went up in elevation it was sheets of snow flying across the night sky. It looked like ghosts. After a few hours in the car we finally made it to Denver and could breathe. We when we got into our hotel room we heard on the news that they had shut down Vail Pass; which is the pass my mom just finished driving.

This picture is from this year but it's the same thing that we saw in 2013.
Vail Pass was closed this time too. 
As we sat on the airplane flying back to Illinois there was a lot of thoughts going through our minds. Like always, all we could do was take things one day at a time. When we got back to Illinois physical therapy started up again for the next few weeks and the next thing we know we were flying back to Colorado...again.

http://www.pinterest.com/pin/448037862903301018/

Saturday, December 6, 2014

Dance in the Rain

November 2012

Pain! Lots and lots of pain! That was my word of the day for several weeks/months. The anterior capsulolabral reconstruction w/ allograft shoulder stabilization surgery did not go anything like my previous shoulder surgery recoveries. At my post-op appointment I learned I had diffuse grade 2 and grade 3 osteoarthritis on my glenoid (socket) and humeral head (ball). The arthritis occurred in 8 months. During my surgery in March of 2012 I had one spot of moderate chondromalacia which is softening of the cartilage. Now I had diffuse arthritis throughout the shoulder. Even knowing there was arthritis in my shoulder something just didn't seem right. I couldn't pinpoint what it was exactly; I just know I've never hurt that bad in my life.  I kept telling my family over and over again to get the graft out of my shoulder because I thought it was maybe that causing the pain (I know now it was NEVER the graft). I had pain that was radiating over the right side of my neck along with this constant sharp/stabbing pain over the front of the shoulder area that just wouldn't go away. I took the pain medication and muscle relaxants as prescribed and it didn't touch this sharp pain. I slept a ton in the day and very little at night. I iced a ton and I cried a ton. The pain just wouldn't subside. 
Incision 3 days post-op
During this time I also had my calculus class to attend too. After every surgery I only give myself 2 weeks off. This time though I only let myself miss a little over a week. Thanksgiving break was about to happen and I knew I just needed get through a couple days and then I could rest. My class was in the morning. The car ride was brutal. I was so pale and looked awful. I made it to class and sat in my seat which was in the front row in the corner. My teacher walked in and spotted me and kept his eye on me the whole time. By the time break came I couldn't even hold myself up. I rested my head on my left hand and existed. When class started back up I slouched in my seat and just stared at the white board trying to understand whatever was being taught. My neighbor offered to take the notes for me. I took him up on that offer. I didn't feel like writing left handed anymore (I'm right handed). The following week after Thanksgiving we had an exam. During Thanksgiving break I tried to study but I wasn't retaining any information because I couldn't concentrate. When I took the test I did absolutely awful on it. Before the test I was earning an A and after that exam I dropped to a low B. I was freaking out because there were two more exams and then the final exam to still get through. I decided to just withdraw from the class because I didn't want to bring down my GPA and the demands were just more than my body could tolerate at that time.

Thanksgiving dinner with my grandpa, sister, nieces, dad and mom (she's taking the picture)
I'm the one in the pink doing the famous fake smile :)
November 26, 2012 with my niece Emily.
December was less stressful than November because I didn't have to worry about class but it was still a really rough month. I was not used to feeling the way I did a month out from surgery. My energy level was really, really low but since it was Christmas time I wanted to try to enjoy the Christmas festivities too. If I knew I was going out and about at some point in the day for a couple hours I made sure to rest and not do a lot beforehand to conserve my energy. To this day I do this because sometimes things aren't ideal and you just have do the best you can with the body you have to deal with. In mid December we went to my cousin's house for the King family Christmas party. It does the mind and body a lot of good to just get a change of scenery sometimes. It's also a good distraction. We knew before we even left our house to go to the party that there was no way that I was going to last the entire evening; however, I knew there would be a comfortable couch to sit on so really there was no reason why I couldn't go. Personally, I would rather go for a couple hours and try to have a little fun instead of not going at all. 
Incision almost 1 month post-op
I hung out with this little cutie who is my cousin at the Christmas party.
If you ever need a smile just go hang out with a baby. 
The following week my sister was going to take my nieces to the Brookfield Zoo so I decided to go with. There are wheelchair rentals and lots of benches in between to sit down. We went shortly before it started to get dark because the zoo decorates with Christmas lights. It was a very enjoyable time and it wasn't freezing. I'm positive we will be going there again this year. It has kind of turned into a Christmas time tradition for us.

My nieces and I sitting on the Christmas sleigh
I felt like a big puffy marshmallow between my hoody, winter coat, and brace.
I stayed warm though!
The following week was Christmas and in the blink of an eye 2012 was over. It was a roller coaster of a year. There were a lot of highs with that feeling of hope that I had my last surgery for hopefully a long time back in March and I could start planning for future. Then there was the major low of waking up with my shoulder unstable again and being back in surgery out of state in Colorado 8 months later. Soon enough physical therapy would begin and the crazy "impossible" medical journey would continue into 2013. There would be a surgery, four medical trips to Colorado, one medical trip to Kentucky, and one medical trip to Ohio. I guess the one plus of having really, really, rare complex shoulder injuries is you get to travel. Over the years I have certainly made my way across the United States seeing some of the top shoulder specialists in the country that I've been referred to.

http://www.pinterest.com/pin/496944140105510320/ 

Tuesday, December 2, 2014

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

video
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