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...

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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/ 

A Big Ol' Mess 2013

Chronic ongoing medical problems can cause a lot of stress on relationships with friends and family. I don't think it is something that happens on purpose. I think it is something that comes with the territory when it has been going on for a number of years. It takes a lot of effort to keep those relationships strong. There are feelings of guilt, jealousy, tension, not being able to relate, not wanting to be involved, confusion, not being able to physically help, frustration. The list goes on. From a patients perspective, I think guilt is something we feel a lot. It's not a matter of wanting to be the center of attention, or being spoiled compared to others. It's more an issue of we might need more help because we physically CAN'T and out bodies need "down time" to get through the day. There is a HUGE difference.

Ex: my sister needs a wrist fusion surgery. She has needed it for quite some time. Of course she hurts (who wouldn't) and it obviously limits her ability to do certain tasks; however, in the big picture she is still very functional. Getting dressed doesn't cause a problem, it doesn't effect her entire upper body, she can drive, she can work. She is way more independent than me. My sister lives in our house with her two children (my nieces). When she has surgery that means my mom and I primarily inherit 3 individuals to take care of. Plus my soon to be 91 year old grandpa. I'm very limited in what I can do to help out which means my mom is the primary caregiver. My mom has her own medical conditions that she deals with daily. I feel a ton of guilt that my sister hasn't had her surgery done yet. I can't magically make my body physically able to do things that I can't or shouldn't be doing to help out in a way that is needed to help take care of a post-op person plus a 7 and 10 year old who have their own activities and schedules. It is really hard when you are put in this type of position.

Since my last post on September 12th I've had my 8 year injury anniversary on September 21, 2013, had 2 doctor appointments, been to Cleveland, Ohio and back to Illinois, got a lot of information about what's going on with my shoulders, and have just about made up my mind with how to proceed.

On September 23, 2013 my mom drove me to Cleveland, Ohio to get a second opinion about treatment for my right shoulder from Dr. G. It was one very long day. We were up at 4:45am. In the car by 5:45am and didn't get to Ohio until about 3:30pm. This gave me enough time to shower, chill out and get to the doctor by 5:15. It was so busy. Luckily, Dr. G couldn't have been nicer. Coincidentally he was trained by my Colorado doctor, Dr. M. At the appointment, Dr. G tried to examine my shoulder and was very unsuccessful. Since the 23rd I haven't been able to bend my elbow up all the way to my shoulder. Tasks such as eating and brushing my teeth have to be done with my left hand because I can't reach my mouth with my right. Dr. G is going to call me back with his opinion. He wants to talk to Dr. M and consult with a few doctors that he knows. I respect this a lot. I'd rather a doctor take the time to get all his facts straight before giving me their opinion.

 Elbow still doesn't bend past here

After the appointment with Dr. G
Luckily I can dangle again and the
above picture only lasted a couple days.

Ready for the car ride home to Illinois. I had 5 different

pillows to prop with to be as comfortable as possible and have

support for my shoulder with all the bumpy roads.

September 26, 2013 I saw my long time Illinois doctor, Dr. K. He is in agreement with Dr. M that I should have the reverse total shoulder replacement done. Dr. K felt bad telling me this because I am only 24 and the replacements only last approximately 10-15 years. Like I told him, I am young but my shoulder is old. My shoulder is non-functional and it kills. Dr. K then said, "Your shoulder is ancient. It is that of a 78 year old woman". He couldn't believe what my MRI looked like. Not only did it show all of the arthritis, but it also showed inflammation is within the bone. When Dr. K was in my shoulder in March of 2012 I had moderate chondromalacia (softening of the cartilage). In a matter of a year I went from some soft cartilage to bone-on-bone arthritis. Dr. K then said to my mom and I we might want to go to France because they have been doing the procedure a lot longer than the United States and it might be cheaper than Vail, Colorado. When you deal with chronic medical things, you prepare yourself for various scenarios. Hearing you might want to go to France was not one of those scenarios we prepared ourselves for. We were both shocked. I highly doubt we will go to France but I guess you never know for sure.

Yesterday I was washing a cup and the handle broke off. The little bit that my shoulder moved forward when the handle broke, caused my shoulder to subluxate and my muscles to freak out. Trying to do a basic little task shouldn't cause my shoulder to act the way that it does. It is like a ticking time bomb. I never know when it will go nuts.

The muscles surrounding my shoulder and in my neck

tighten so bad. When my shoulder reacts like this, I can't

begin to express how much it hurts. 

So at this point I am pretty sure I am going to have the reverse total shoulder replacement. The way my shoulder is now is not an option to live with. Even though there is a relatively high complication rate (10-15%) then you add in my history, I think I would regret not having the procedure done knowing I have this option. I know my shoulder has the potential to have more function than what it does now. I was told by my CO therapist that in order for this procedure to be successful I have to get my deltoid as strong as possible. I honestly do not know how I am supposed to strengthen. I have an email in to Dr. M to see if there is something to ease the pain within the joint to allow me to strengthen. Right now any sort of muscle contraction causes nothing but sharp pain and I constantly sit forward it seems. So until I know when the surgery will be done or unless something crazy happens, I will be trying to write about more about the story of how I got to where I am today. I left off in 2011.

Here's a short 5:40 second YouTube video that was made.
23 Orthopedic Surgeries More to Come...Please Help!