Halo Brace Removal December 2016

Four days later after "The Day from Hell" (previous post) it was time to drive back to Illinois. Thanksgiving 2016 was coming up and it was nearly time to have my halo removed. I was also coordinating appointments out of state with my surgeon Dr. E. This involved a consultation appointment, and hopefully a surgical date. The pain in my right scapula had escalated beyond anything I had dealt with before. I had been running around all summer saying something feels different this time around and that pain had increased a lot since my visit to the emergency room four days prior. 

November 19-21, 2016 my mom and I drove back to Illinois. I had mixed emotions heading back to IL because I was looking forward to seeing my family but I knew my halo brace would be removed very soon. I felt GOOD in the halo all things considered. The look of it, bulkiness, constant stares, and inability to remove it didn't phase me anymore. After 8 months you most definitely get used to it; or at least I did. The halo kept my spine in proper position, and it also acted like a brace that stabilized my shoulder blades because of the constant compression. The compression most definitely hurt but I knew the pain would hurt more without. I was also nervous about the halo removal process because I didn't know what to expect. 

November 24, 2016 was Thanksgiving! It was a nice day. After the year of health issues in the family we were all grateful to still be a family of four generations who could all gather together. I know it sounds cliche but do not take your health for granted for you or anybody else; things can change at any moment.

Grandpa and his girls. Four generations together on November 24, 2016; my mom, sister, nieces, and of course grandpa. 

Now for the fun. I love Halloween but Halloween in 2016 was different since I was in Colorado and my nieces were in Illinois. I had no reason to dress up because my nieces are what make it fun even though I thought it could be really fun to dress up with the halo on. Think about it. How many times are you actually in a halo with screws literally sticking out of your head? To my surprise I would end up in a halo a second time but that's for a later post. I thought I would be in the halo only once. In celebration of my halo being removed I wanted to dress up; therefore, my family and I decided to let the games begin. My family dressed me up in three different ways. 

Costume Number 1: Frankenstein!
Frankenstein was incredibly fitting because of the screws sticking out of my skull. Who needs props from the store when you get to have your own props from the hospital attached to you.  

November 29, 2016 official start of "halo count down". I was very green, and looking like Frankenstein. The green "face" paint was a pain in the butt to remove because I accidentally grabbed clown makeup rather than face paint. It took forever to be removed. 

Costume Number 2: Regina George from the movie Mean Girls

If you haven't seen the movie Mean Girls there is a girl who ends up in a halo brace. She goes to the dance in her halo, wearing a pink dress, with flowers on her head. I just so happened to have a pink dress, and wanted to dress up as her the minute I had my halo put on. 

Costume Number 3: Christmas Spirit

Gotta love The Dollar Store! Since Christmas was less than a month away, I dressed up as 'Christmas Spirit'. My "necklace" was a really long piece of garland that was wrapped around my neck. My nieces hung Christmas tree ornaments with bells to my halo bars. There was no sneaking into a room. 

December 1, 2016
It was a long time coming. I was five days shy of 8 months in the halo brace. There was a lot that had happened from the time I had the halo put on, April 5, 2016 that wasn't expected. I was supposed to be fused only C3-T2 but ended up with a subsequent surgery making me fused from my skull-T2 (second thoracic vertebrae). Initially I was supposed to be in the halo a couple months...not 8. I got to experience what it feels like for your skull to slide forward. It's a feeling I never want to experience again. That was due to craniocervical instability (CCI). My confidence level had to increase to some degree in order to still go out and try to live my life despite feeling really self-conscious. My mom told me despite not feeling confident to just go out and own it. She said to lock eyes with people and smile back. So that's what I did. It worked. Being in the halo didn't hold me back. I walked with my head held high (literally) and went hiking, trotting through town, sat by the pool, went on a pedal boat, out to the horse ranch, and anywhere else my little heart desired. 

This is how I showed up to my halo removal. My neurosurgeon always wanted me to dress up in some fashion. So after much pressure from my family I put my obnoxious bell ornaments on my halo, my tree skirt, garland necklace, and silver garland, elf socks, and boots and owned it. This isn't a sight one sees every day. My doctor said he wished there was time for me to go to the Children's Hospital in my get-up to show kids life goes on even with a halo and bulky shoulder brace. 

While I was waiting in the lobby to be called back for my appointment my ornament bells were making a ruckus and getting the attention of everybody around me. There happened to be two little girls sitting near me. They walked over to me after coloring a picture. I thought they were just showing me when in fact it was a little gift. They eve wrote 'Get Well Soon' and I have it to this day because I am a sentimental person. Finally some kids I didn't scare!! (seriously)

When I was brought back to an exam room I knew I was going to want a picture with my surgeon before all my 'Christmas Spirit' decorations were removed. I wish you could have seen the look on his face when he walked into the room. It was priceless!

ACTUAL HALO REMOVAL VIDEO 15:42 There's nothing gross about the removal process. There's no blood. I wasn't crying. I wasn't screaming. It's literally just a video of my surgeon removing the halo. At the beginning of June 2018 I went on my YouTube channel and this video was at approx. 55,000 views. It's two months later and now over 447,000 views! I don't know who found it but that's a lot. 

https://www.youtube.com/watch?v=eFq_3hoI6wA&t=41s

What did it feel like to have the halo brace removed? This is a question many wonder when they're put in a halo brace. I wondered this myself. For me, it didn't hurt as bad as I was expecting. Keep in mind my perspective is quite screwed up from all the other surgeries, and chronic pain in general. Out of 4 pins only one was really bothersome. It was the pin on my forehead. I didn't cry during the removal. When the halo was loosened my head/neck felt really heavy. My muscles hadn't had to work for 8 months so they were really weak. More than my neck hurting my shoulder blades were hurting the most. Maybe that was a distraction for all I know. Either way, the removal went smoothly. There were no complications, and it felt extremely weird not having the 8 pounds of halo weight on my body. I felt really thin, and light.  

After 8 months this is the first picture being halo free with my surgeon. As I feared, there was a lot of shoulder blade pain. You can tell at the end of the halo video that something was bothering me because I gave 'the look' to turn the camera off.

Home at last. The new brace I was in is called a CTO (cervicothoracic orthosis). It immobilized my neck, and thoracic spine. I was finally free of my "birdcage". A birdcage is how we explained what type of brace I was in to my 93 year old blind grandpa hahaha. It worked; he felt the bars and everything with his hands...ahhh memories.  

A good quote about trying to live life. Joy doesn't come from your circumstances. Joy comes from your outlook. Try to find daily joy. 

Next post will be about my trip to the shoulder surgeon and the surgeries that ended up occurring. Nothing can ever go as planned...

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*NEW! People You Should Know Podcast I had the wonderful opportunity to share my story for a new podcast. Click here to take a listen Megan King- Ehlers-Danlos Syndrome Make sure you listen to the other podcasts that are featured. There are so many amazing individuals with amazing stories that you'll most definitely want to take a listen too.

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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* *As always, if you wish to communicate, you can email me at kingmeg19@gmail.com. To those that are shy to email me, I can tell you now, you most definitely are not the first. 

*NEW! People You Should Know Podcast I had the wonderful opportunity to share my story for a new podcast. Click here to take a listen Megan King- Ehlers-Danlos Syndrome Make sure you listen to the other podcasts that are featured. There are so many amazing individuals with amazing stories that you'll most definitely want to take a listen too.

Recovery Continued 2016

First, and foremost sorry to all of you who have been reading this blog and it came to a sudden halt. There was a lot of medical that interfered with my ability to stay on top of this blog, and because of all of the medical, I couldn't spend my time writing about more medical. I love writing, and I get a lot of enjoyment reaching out to people. Sometimes I have to take a step back because every second of my life can't be consumed by writing about my health, and how I deal with it. My stepping away for a little bit turned much longer than I anticipated due to additional surgeries that needed to be done. I hope you all can understand. 

Where I left off was continuing my recovery from skull-C5 fusion. I was still in the halo brace. I was less than a month postop and recovery wasn't going too well. The pressure in my head was horrible which was inhibiting my ability to be upright. I had to lay on my back constantly to make the pressure subside. I wasn't able to live my life; it was simply going through the motions. My parents and I knew I needed to get back to Colorado. With that being said, I will now pick up with where I left off.

September 2016: When I got the okay from my neurosurgeon to travel to Colorado to see if the climate would help me, I couldn't get there soon enough. If it actually worked, I would have clicked my heels together like Dorothy in The Wizard of Oz to get back. I had been traveling to Colorado since 2012. The first time I went was to have a shoulder surgery, and the times thereafter were for physical therapy. I noticed when I went to Colorado I always felt much better. It's less humid, and the high altitude was good for my joints. One of my surgeons documented in my medical clinic note that it is a known phenomenon in certain patients with Ehlers-Danlos Syndrome (EDS) that we do better in high altitude because there is less pressure on the body, and there is room for the joints to swell; this means less subluxations & dislocations. I am one of those EDS patients who does better in the mountains. 

September 27, 2016
The day arrived where my mom and I would begin our journey back to Colorado. Instead of my mom and I just traveling, we had an additional companion. Her name is Daisy, and she is the best dog ever!! This was the first time Daisy was going to be going to begin her cross country road trip experiences. She was definitely up for the challenge because she loves going for car rides. 

The beginning of Daisy's great adventure

Being this was Daisy's first road trip we learned new things about her. Some of these things include: she's scared of semi trucks. Every single time a semi came on her side of the car she would get off of her seat, and try to climb on the other seat which had stuff on it. We learned she doesn't like to go to the bathroom in public places. Mom and I were literally out at two, and three in the morning trying to get her to go potty. When she did go, we then had to praise her like she was a toddler, and clap and sing like imbeciles, "you're such a good girl" so it would make her happy, and in the hopes she'd go to the bathroom easier next time. I'm sure we looked quite ridiculous. Good thing it was middle of the night and nobody was out. We also learned she likes to sight see. She would sit up for long periods of time and look out her window. She was most amusing when we were in the mountains. Daisy looked out the window so much.  

October 1, 2016
Unlike past travels to Colorado we gave ourselves an extra day to drive. The extra day was for my body because I was just approaching one month post-op, and we didn't know how Daisy was going to do in the car. Fortunately she did great. We went up into the mountains, and arrived to our final destination!! I couldn't be happier. As we drove west, and started driving away from Illinois the pressure in my head was improving day by day. I able to be upright more as we went up in altitude. Once we got into the mountains though, my gosh, what a difference!! I was actually able to be upright and I felt like a new person. It was amazing!

Finally upright! Look at those Aspen trees. It's stunning in the fall.

Besides the pressure in my head feeling significantly better, my body felt better like it always does, and my soul was filled with so much happiness. There is something soothing about being completely surrounded by the mountains, where I feel like I can step away from the medical, even though it's there. I am able to do easy hiking trails, and get myself stronger. Everything I need is there such as hospitals, restaurants, stores, etc. I'm not a big city person so this is perfect for me. It's a great feeling when you can live your life more because you don't hurt as bad. 

October 3, 2016
It was an unexpected crazy morning. I woke up expecting to be able to relax after the drive out but instead found myself in an orthopedic clinic. In the middle of the night I heard a strange noise from my halo but I didn't think too much about it. In the morning my mom was on the phone with my dad when all of a sudden I said, "Uhhhh, MOM!!!! We need to go to the orthopedic clinic like, right now!! The bar to my halo just popped out! I'm not kidding." Needless to say, my mom's phone call with my dad ended immediately, and off to the clinic we went. I was brought back to a room right away. Initially they wanted me to see my surgeon. I said that wasn't a possibility because he's in Illinois. They couldn't turn me away. The spine physician's assistant went to the spine surgeon explaining the situation. He then had permission to put the bar back in place, and tighten everything. It was very good this happened to my brace after the full neck fusion vs. before. Had it happened before my craniocervical fusion at the end of August this could have been pretty bad.  

The area that is circled is the bar that dislodged from where it's supposed to be. The noise that I heard in the middle of the night was that bar moving. Thank God my neck was entirely hard fused at this point because it could have been a bad thing if it weren't. My mom, Daisy, and I went to the orthopedic clinic and they put the bar back in place. I'm telling ya, there's always some type of crazy medical thing happening. Fortunately, this one wasn't painful.

October 4-6, 2016

After all of the car travel, the following days were dedicated to recovering. I went for a walk or two every single day to strengthen my legs, and look at the yellow Aspen trees. For me, looking at the beauty around me is really good motivation. One day I hope to be able to hike up a mountain (there are easy trails). Besides the daily walks, I was catching up on much needed sleep in preparation for when physical therapy would begin. 

Finally physical therapy began. The plan was to work on strengthening my core, hips, legs, and the dreaded shoulders. The shoulder work didn't go well at all on my right side. My right scapula needed so much surgical work which couldn't be done until my halo was removed. I told my therapists' there is a very different pain that I have never experienced before, and I couldn't pinpoint what was wrong other than I think something is not attached. Despite all of the muscle tears, and instability we stuck with the isometric exercises to strengthen. When I wasn't exercising my right shoulder/scapula I was wearing the custom shoulder brace that was made for me when I was in Minnesota. That brace helped so much in supporting my arm. Between the halo brace, and the shoulder brace EVERYONE would stare wherever I went. 

At this point in life not a lot was happening. My time was spent in physical therapy, and recovering. I'm going to end this post with some pictures because it'll fast forward to when things were about to change for the worst. It didn't take long. 

Enjoy the photos of living my life the best I can given the circumstances!! 
If anybody who was, or is in a halo would like to connect, please email me at kingmeg19@gmail.com 

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October 9, 2016 one of our favorite State Parks to hike at...

 the views are amazing. 

October 23, 2016 beautiful day to go for a walk, and look at the lake and mountains.

October 26, 2016 Daisy made friends with the horses. She LOVED them. It was the first time she was around a horse, and she couldn't get enough of them. She wasn't scared of them at all. 

October 27, 2016 walking around the lake with Daisy. 

November 2, 2016 first hike around the lake with just my dad. It was a great memory. We had a lot of fun on that walk. 

November 4, 2016 my dad and I!

November 4, 2016 best parents!

November 13, 2016 at the horse park. The horses kept smelling my head, and my halo. 

November 14, 2016

This was the last day before things turned for the worse...

NEW! People You Should Know Podcast: I had the wonderful opportunity to share my story for a new podcast. Click here to take a listen Megan King- Ehlers-Danlos Syndrome Make sure you listen to the other podcasts that are featured. There are so many amazing individuals with amazing stories that you'll most definitely want to take a listen to.