The Day from Hell

You yell, "BOOOOO" as you jump out from behind a wall. You follow it up with a, "Haha, I scared you!" In majority of cases watching somebody jump in the air, or drop down to the ground, with a high pitched scream is funny. I get a kick out of scaring my nieces at home. When they do their blood curdling scream, "grrrr" at me, and then laugh it puts a smile on my face. I then say, "I love you!" as they walk away and reluctantly say, "I love you too."  So why am I talking about scaring people? Because being scared can have negative effects on individuals with EDS whose joints subluxate (partial dislocation) and/or dislocate (joint pops fully out) easily. 

November 15, 2016
The day started off a bit more difficult than my typical baseline pain day. My right shoulder, and my right scapula (shoulder blade) were subluxated when I woke up. My mom couldn't get them back in due to me being in the halo. Since the halo covers your back it makes it difficult for someone to get a good grasp of the scapula, and manipulate it back to where it should be. Fortunately I had physical therapy before noon so I thought at the very least they'd be able to partially get my scapula back in place, and tape my shoulder with leukotape. Leukotape is stronger than K-tape. 

Reminder of how the halo covers your back. As you can see, the halo covers both shoulder blades. It was somewhat beneficial at times to stabilize my shoulder blades because there's a compression component but when the shoulder blades decide to shift out of position, you have a really big problem. 

When I went to physical therapy it was confirmed my scapula and shoulder were subluxated. My physical therapist taped my shoulder joint which helped some; however, it was challenging to get my scapula back in place. We didn't do a ton at physical therapy because I was in a lot of pain, my shoulder was being temperamental, and we didn't want my shoulder to shift more out of place. When therapy ended my mom and I went home. The plan was to get my hair washed. I was sitting on the kitchen counter setting up the shampoo and conditioner so my mom could wash my hair in the kitchen sink; again, the halo can't get wet in the shower. While I was sitting a strong cross breeze went through the house, and slammed a door shut loudly. This scared the crap out of me, and startled me big time. No big deal, right? Wrong! Since the slamming of the door blindsided me, and I was completely relaxed, my shoulder and scapula dislocated. With EDS you're always constantly aware of your surroundings. You consciously think of tightening your muscles when out in public, walking around...basically everything, because tightening your muscles helps aid in stability. If you're completely relaxed and something happens our lovely EDS tissue is far too weak to stabilize our joints, therefore they pop out. That's exactly what happened to me. This has happened multiple times in the past but this was the first time with the halo on. Let me tell ya, it was a living nightmare. The halo makes it 100 times harder to deal with.

My mom was sitting in the chair, and saw it all happened. We locked eyes on each other. I started laughing for two reasons 1.) a door slammed and significantly popped my right shoulder and scapula out, and 2.) I was in shock. I sat on the counter with my legs crossed leaning forward with my right elbow sitting on my knee. All I kept doing was chuckling, crying, and saying, "Oh no, this is bad. This is really bad. This is really, really bad. Crap. What am I supposed to do? As soon as I stand up gravity is going to make this shift out even more. Mom? Mom? Mom? What do I do? Maybe I should just sit here all day? If I stand up I'm pretty sure I'm going to end up in the emergency room because I can feel my shoulder blade sticking into the halo, and trying to hook around the outside of it. Mom? Tell me what to do!" My mom calmly said in a comical tone, "Well hon, you can't just sit on a kitchen counter all day. Why don't you slowly stand up, we'll see what things look like, and then determine if we go to ER." I agreed with this plan. I stood up and my R arm just dropped. I was stuck leaning forward due to the scapula positioning. I had my mom undo the Velcro strap over my shoulder so I could assess things better in the mirror. I couldn't see my shoulder well in the mirror due to not being able to turn my head. I had my mom take a picture. I looked at the photo and said, "Time to go to the ER." 

Ouch!

Shortly thereafter my mom and I were in the ER. Fortunately, there were no other patients waiting to be seen. I was brought back right away. Then the fun began with all the questions. How did you injure your shoulder? Did you injure it skiing? Me: "A door slammed shut, and I was startled. I have EDS." Everyone had that look on their face that said, "Seriously?!" The questions continued. What happened to your neck? Why are you in a halo? Did you need surgery? Me: "Can we please address my shoulder?" The nurse then gave me a gown. I chuckled and looked at my mom and said, "What is this for? The halo covers me. It's not even going to fit." I put it on anyways. My mom tied it around the bars of my halo hahaha. I was a fashionista for sure. The doctor came by and evaluated my shoulder/scapula/clavicle. I was brought back to x-ray which confirmed things were out. The main culprit was the scapula. The scapula is the foundation of stability for the shoulder girdle. Without a strong foundation aka scapula, the shoulder joint, and clavicle can become unstable. An example being: in my case, my surgeon attached an Achilles tendon allograft from the bottom outside portion of my scapula, pulled it up on a diagonal, and attached the graft to my spine. This allowed my arm to be able to move because there was a solid foundation, and helped with the shoulder joint instability. Hopefully this helps clarify the importance of having a stable scapula.

As you can see, that is what we call a very unhappy scapula on the left. It was stuck like this causing instability in the shoulder joint. The positioning of the joint is not very good. When you look at the picture on the right my scapula is back in position. My shoulder joint is in position, and things are significantly better. 

The ER doctor decided it was best to call orthopedics to come down and see me because it was a complicated situation due to the varied problems in three locations, and the halo. In the meantime they had started an IV in my elbow after stabbing me a million times (another lovely issue with EDS) and I was given IV Valium which is a muscle relaxer to try to get my muscles to chill out. I was also given pain medication. 

I wasn't kidding when I said my mom tied the gown to the halo bars haha. That's my beautiful clavicle (collar bone) sticking out for your enjoyment. No need to thank me. 

Before orthopedics came down I texted my shoulder ortho about what was happening. Within a few minutes my wonderful ortho from Minnesota called. My mom talked to him because my IV was in my elbow, and I couldn't get the phone to my ear. My mom explained the situation to Dr. E. She then held the phone to my ear so I could talk to him. Dr. E told me to have the doctors give me more Valium to relax the muscles. He then said we'll address my scapula once my halo is removed. After telling me to hang in there, and wishing me well, Dr. E then spoke with the ER doctor about how to take care of me. 

Orthopedics eventually came down. They had never dealt with a patient whose shoulder girdle was out of position, and also in a halo at the same time. Could we make this more complicated? The orthopedic told the nurse to give me a lot more Valium, and pain medication because my muscles weren't relaxing. One of the problems with EDS is that we metabolize medications fast, making them less effective. The goal was to get my arm back in my external rotation shoulder brace. After multiple attempts that failed to get my scapula back in place, the ortho had me lay on my left side. The ortho had another medical personal assist. They pulled my right arm down towards my feet, and then swung my arm forward. An assistant held my arm in this position. The orthopedic then used all his body weight to mobilize my scapula back to where it should be. It was like having chest compression done on my side. Believe it or not I'm usually not screaming or swearing during this process. This time the pain was unreal. I may or may not have said a word that starts with F and ends in K. I said it once, and then apologized. Oops. My bad. The ortho finally got my scapula somewhat back in place, and my arm in my shoulder brace. I cried so much, and was exhausted.

One would think the hard part was done. You'd be half right. Getting my scapula back killed. Now the problem to overcome was getting me sitting upright. Upright means gravity. Gravity means my shoulder will come out. The nurse ended up sneaking into the physical therapy department and grabbing more leukotape because every time the bed was raised, my shoulder was spasming uncontrollably. She put a ton of tape on my shoulder to pull it back so it wouldn't come out of the socket. I was maxed out on IV Valium so all we could do was baby step me up. 

The time had come where I was finally sitting. The pain was intense though. Having the ortho pushing his body weight on my side, my muscles spasming like no other, and the pull of everything on my spine had me feeling miserable. Ideally the doctor and nurse wanted to admit me for pain control but I didn't want to be in the hospital. At this point it was nighttime. The nurse talked to my mom and I. We decided I would go home but if the pain is too much then we'll turn around and bring me back to the ER. Going to an ER for pain control is always nerve wracking. I don't want them to think I'm drug seeking. The nurse made a point of writing in my chart there was possibility of me coming back, and she was going to speak with the ER doctor. This meant the world to me. Fortunately with medication regimen at home I was able to avoid the need to go back to the emergency room! Score!!

So that was the day from hell. Little did I know the quote above would be foreshadowing what was to come. I had 15 days left in the halo, and life would take me to a place I never was before. 

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