Wednesday, February 25, 2015

2015 A Humbling Surgery


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, LAUGHThey'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.

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

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

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 


  1. You've got a whole village! Thank God for them ... It's wonderful to see a big, giant smile on your face! Keep healing!

  2. Hard to read, but we are sending ongoing support. Keep updating as you can.

  3. wow, you truly are an Inspiration to Us all! Your incredible, Im going to share this Everywhere in honor of your incredible and Amazing Spirit! Stay Strong!

  4. New Follower! Your story is such an inspiring one. Stay strong and know that you are in my thoughts and prayers for a speedy recovery.

  5. You are amazing! I also have EDS but no where close to the extent that you do. You truly are one strong brave beautiful woman!

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  8. Wow you are such a strong person. I would have had real trouble with that kind of trauma. My girlfriend recently had foot surgery to correct her arches and she had to be in bed for so long. I am glad she is ok now but I so know how you feel, thank you for this blog it inspired me.

    Jarrett Ransom @ Dr Wade Faerber

  9. What an amazing story. You're an inspiration to never give up. I hope you are healing well