2015 A Humbling Surgery

WARNING TO THE SQUEAMISH TYPES: FRESH INCISION PICS BELOW. I'LL POST A WARNING WHEN YOU GET CLOSER TO THEM

Before writing about where I left off with going back to Colorado for physical therapy in 2013, I want to write one more current post so you all know I'm alive and made it out of surgery on January 28th okay. The photo below is the last outing with my nieces and one nephew to see Disney's Frozen on Ice five days before surgery.

Below is how I ended up decorating my brace. I really love the encouraging words on the straps. I painted on HOPE, STRENGTH, BELIEVE, DREAM, LAUGH. They're daily reminders. I think of it like putting on my straps of armor. Then of course I have some Chicago Blackhawks hockey pride!

Front of brace

Back of brace

January 27th
It was the day before surgery with Dr. E. I had an appointment with Dr. E. It was a chance for me to ask any questions I had and to go over any concerns before surgery the following day. Thank God for that appointment because the procedure completely changed by the time I left. When Dr. E walked in and asked if I was ready for surgery he could tell that I was hesitant by the way I said yes. I told him I didn't think putting the allograft (cadaver) tendon in by itself would work as efficiently without repairing the muscles that are detached too. He smiled and said I'm thinking too much. My response was I'm ALWAYS thinking and my brain NEVER shuts off. I then proceeded to explain when previous doctors fixed one thing at a time it didn't work and I was back in surgery 2-3 months later. I didn't want to be in that cycle again. After listening to my explanation, Dr E agreed to open my incision top to bottom and fix the muscle detachments. Dr. E then said, "There, now no more concerns!" and I said, "Actually there's one more thing; you still haven't gotten my arm up over my head like the doctor and therapists in Colorado did." At that, Dr. E said, "Let's work on this. Stand up and tell me what you want me to do." After some directing and explaining Dr. E finally held my scapula in the correct position and my arm went over my head!! YAY! Good thing I spoke up, because this completely changed how surgery proceeded.

This was my view from my hotel bed...the hospital. It beats looking at a dumpster 

January 28, 2015 (Weird fun fact- this was my first surgery EVER in the month of January. Now all months have been covered except August. Know that's NOT a goal I'm trying to reach) )

I was up early in the morning day of surgery because I didn't sleep very well. I showered and did my tradition of painting my toenails. I had to be at the hospital at noon so beforehand I watched the movies; Mean Girls and Patch Adams...nothing like complete polar opposites. Mom, Dad, and I did lots of waiting at the hospital because we were there at noon and I didn't get wheeled back to the operating room until after 6!! So what do you do when you're bored? Play cards and take pictures. Man was I hungry!!!

Dad and I

Mom and I 

It was unbelievably hard to get comfortable while waiting to get wheeled back.
When I saw this picture I really noticed how odd my neck looks

The medical team finally arrived with my chariot aka the gurney. We put my shoulder brace and neck brace on it so it wouldn't be forgotten. I hugged and said to my parents the same thing I always do before being wheeled to surgery, "I love you and I'll see you afterwards". This was the 24th time I've said this to them. I can only imagine what it must be like from their perspective watching me be wheeled off for the 24th time. I know NONE of us ever saw this many surgeries coming the first time I had ankle surgery. We've never said it's easy but I am blessed with one strong, stubborn, family who fights till the end.

Just when I was about to be put to sleep, Dr. E walked into the operating room. He said, "Did you see my disco ball hanging?" I shook my head no and he said, "TAKE THE MASK OFF! DON'T PUT HER TO SLEEP YET!" A few second later he had this disco ball in his hands that he was twirling. I started laughing! He then said, "THERE, NOW YOU CAN BE PUT TO SLEEP LAUGHING AND KNOWING I'M NOT A LIAR" He also reassured me I will be positioned exactly how I wanted to protect my neck, R shoulder and other joints in general due to Ehlers-Danlos Syndrome (EDS). Nurse Stacey rubbed my left forearm while saying everything will be okay. Next thing I know I was waking up in recovery.

I remember someone holding my hand. It wasn't my parents, or a nurse. I honestly thought it was Dr. E. He was asking me what I did back in the O.R because everybody liked me a lot and had nothing but good things to say. My mouth was so dry so I just did the "I don't know" motion with my hand. He laughed and said they all loved me and kept talking about me. He then let go of my hand and the pain just started increasing. I remember saying my scapula, my spine, and my neck are killing me. That person that I thought was Dr. E was in fact him. He grabbed my hand, squeezed it again and told me I know you hurt, I'm sorry. There was lots wrong." Dr. E is the most compassionate doctor I have ever met. He is truly amazing.

There sure was a lot wrong with my left scapula (shoulder blade). I stayed in the hospital 4 or 5 days. The scapaulathoracic articulation was unstable (scapula joint). We knew I had muscles detached but we didn't know which ones or how many. One muscle had detached for the first time ever; my levator scapulae. Two other muscles had re-detached from my scapula; rhomboid major and rhomboid minor. There was also a mass that had just detached and stretched from my scapula; not sure which muscle that is. So there were at least 3-4 muscles detached. Now it was time to do the original procedure; stabilize my scapula. To do this an Achilles Tendon allograft was attached to my scapula and anchored to my spinous processes. Dr. E said it's basically a fusion only without plates and screws. A I read through the surgical report so many pieces fell together as to why I've been killing with pain for 3 years just on this left scapula alone.

http://www.slideshare.net/TheSlaps/dr-b-ch-11lecturepresentation

The rectangles give an idea of where the muscle detachments were.
The line on a diagonal represents the allograft. I don't know if this is
100% correct positioning but it gives you a general idea. This diagram
is on the right side but the work on me was on the left side

http://www.cedars-sinai.edu/Patients/Programs-and-Services/Spine-Center/The-Patient-Guide/Anatomy-of-the-Spine/Vertebrae-of-the-Spine.aspx

The pinkish color is the spinous process and is where the Achilles tendon
 allograft was anchored

WARNING: BELOW THIS 1ST PICTURE IS INCISION PICTURE
Below is what I looked like when I got wheeled to my hospital room. I don't care how medicated you are but those bumps coming out of elevators ALWAYS kill. You can think of them like hospital speed bumps.

Immediately after surgery.
Definitely not the most comfortable sleeping position.

This visually explains why it kills to put pressure on my back and stand vertical.
It was nice not having staples this time around. That cord is a tube
that is attached to a drain to collect excess fluid.

Do the best you can. That's all you can do. 

This surgery has been extremely humbling for me. It has been by far the hardest recovery. I'm one month out from surgery today and the amount of pain and help that still exists is mind boggling for me. This was my 19th shoulder surgery and I thought the pain couldn't get that much worse; considering I've had other really big surgeries. My gosh was I wrong!! This one takes the cake. Maybe it would be easier if I had one semi-decent arm but having both arms out of commission requires help with so many things.

The last time I needed this much help was when I was a small child. In the hospital I was humiliated when I had to brush my teeth while sitting in a chair and had to spit into the cup the nurse was holding because I couldn't bend forward. I was humiliated being checked for bed sores because I was pretty much stuck on my back. The nurses had to sponge bathe me. They had to put my medicine in my mouth and give me my drinks along with a million other things to help me.

Nurse helping me clean my hair

One of my nurses

One of my other nurses 

Its been humbling with my family too. My family has to get me dressed. Since the motion in my right arm is so limited my family feeds me like a baby and puts my pills in my mouth because I can't reach my mouth. Straws are in all my drinks so my family can help me. We now have a wheelchair because I can't walk far due to all the repair work in my upper back I can't stand too straight; EDS is flaring up my knees and hips due to the lack of exercise I have to wear braces for my knees. Then there's the neck brace I have to wear which means lots of stares with all the bracing.

My sister doing my hair

My 9 year old niece feeding me

This has been a humbling experience but if it weren't for the nurses and my family I would be completely helpless. All you nurses and family deserve a million thank yous!! I don't care how much pain I'm in, but I ALWAYS make sure to say thank you. You're the ones helping me get through this after all! Let's not forget all the text messages, emails, phone calls, and sent gifts from friends/family; including people I don't know and have never met. Your support does more than you realize

Feel Better card from my niece and cuddles from my dog 

My first outing was 4 days ago. It was so hard but
so well worth it. Baby steps

https://www.pinterest.com/pin/415105290628623439/

Thank you so much to those that have been 'liking' directly on my blog post and re-sharing it. It has been so much fun watching my numbers rise, make new friends, and hear other peoples stories. Please feel free to leave comments directly on this blog post page.  

If you want to follow current updates, go onto Facebook and directly "Like" Meg's EDS Medical Journey By directly liking this page you will be helping raise awareness about a connective tissue disorder that I have called Ehlers-Danlos Syndrome as well as raise awareness about rare shoulder and scapular injuries.

For more info on Ehlers-Danlos Syndrome Google The Ehlers-Danlos National Foundation 

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/