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. 

One Month Post Neck Fusion

NEW! People You Should Know Podcast: 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.

May 12, 2016
It wasn't exactly the way I had envisioned the way things would be one month out from my multilevel posterior cervical fusion from C3-T2. My mom and I were actually on our way to Minnesota because I had an appointment with Dr. E the following day to evaluate my left scapula. The drive seemed exceptionally longer than normal but fortunately we made it there safely which is all we really care about.

One of the positives of this trip to Minnesota was that I was going to get to meet up with some friends I hadn't seen in several months. One of the friends I met was doing physical therapy in Colorado the same time I was. She and I had the same physical therapist. About mid April she told me she had an appointment with Dr. E on May 13th. I sent Dr. E an email asking if it was possible if I could come in that day because I would be a month out from the neck fusion, I needed to know what was going on with my scapula, and it would be nice to meet up with my friend. Dr. E was nice enough to let me come in on that day.

May 13, 2016
The morning started off with me not in the greatest of moods. My neck and my left shoulder blade were hurting really bad from the drive up, and the anticipation of my appointment was making me feel sick. The good thing though, is Dr. E is ALWAYS a pleasure to see and can pretty much always make you smile even when you're not in the greatest of moods. One thing to know about me, is that when I am nervous I pace the hotel room back and forth which drives my mom absolutely nuts. She oftentimes says, "Do you have to pace so much?" and I always say, "Actually I do."

To get the pacing to stop, my mom suggested I get ready and we go downstairs to the lobby to grab some breakfast before going to my appointment. Getting ready was difficult because I didn't feel good. After I was dressed and ready to go, I reluctantly agreed to go to the lobby because I didn't want to be seen in the halo (sometimes the lobby is really crowded in the mornings at this hotel).  

Fortunately the lobby wasn't crowded. When we walked in, there was a lady that looked at me and said, "Hi, are you Megan?" I turned to my mom because I had absolutely no idea who she was and then looked at her and said, "Yes..." Shortly thereafter my mom and I found out that she was traveling with my friend and my friend told her I was in a halo brace. I suppose that could be another good things about being in a halo depending on how you look at it. The chances of at least two halo people being in the same room is slim to none, which in turn makes you very easy to spot. At the same time, everyone noticing you when you walking into a room is horrible when you don't like attention.  

This is who I met in CO. After we took this picture, I texted it to our physical therapist saying, "Your CO patients say hello from MN!"

The time had come where it was time for me to meet with Dr. E. As always, he walked in and gave me a hug, only this time I told him to be careful so he doesn't poke an eye out on my halo. He helped me get the brace off of my arm and get my sweater off. He commented on how he really likes the arm braces that were made for me to help support my arms. It was difficult for him to evaluate my scapula because the halo vest covers my upper back, but even with that, he could see that my scapula wasn't sitting properly and he confirmed my suspicions. When my trapezius muscle was detached, and then reattached to my neck to do the fusion, it pulled on the scapular repair from surgery in January 2015.

To those that are new to reading my medical journey, I've had a lot of surgery on both of my shoulder joints & shoulder blades. On January 28, 2015 for the first time ever, I had a new procedure done where they took an Achilles tendon allograft, and attached it to the bottom of my scapula and then to my thoracic spine. I also had 4 of my muscles that detached from my scapula reattached; levator scapulae, rhomboid major, rhomboid minor, and my lower trapezius. I would put up my amazing & gory pictures of this surgery but they're too graphic compared to other surgeries I've had done. It would probably gross out too many people.

We're not completely sure if my trapezius muscle detached completely, or if it's really stretched out, but either way, the change in tension messed up with the dynamics around the scapula causing it to become unstable once again. At this point Dr. E told me that he will have to take another allograft (cadaver) tendon and secure it to my scapula and then to my spine to stabilize it. I asked if he would be able to do surgery on my left shoulder joint at the same time but unfortunately the bracing is different and the complication risks increase. He mentioned he could potentially pin my shoulder joint in a neutral position and we can see/hope it will stabilize itself by getting stiff, but doing both procedures together is an absolute no. After hearing this information, I started to cry because I was so overwhelmed. I told Dr. E I wasn't mad at him; I was just really frustrated at the circumstances. When I signed the consent form to have my neck fused I never considered that it would interfere with my scapular surgery. Dr. E grabbed the Kleenex, and told me not to cry because we will figure everything out and hugged me again. If there's one thing Dr. E doesn't like, it is seeing his patients cry. 

The circled area is where I felt things

stretch out or tear after the neck fusion.

After my mom and I left the hospital we went back to the hotel and I tried to rest for a little while. The best way to describe how I felt was just utter exhaustion; both physically and mentally. Fortunately later that day we were able to have a good "pick me up". My mom and I went with our friends to see a movie in the early afternoon, and then later that evening we went to dinner. As always, with all of the consuming medical nonsense, my family and I try really hard to offset it by making sure to have some non medical fun. Meeting up with our friends was a great way to do this.

May 14, 2016
My mom and were going to go to our other friends' house. We met them at the same hotel last fall and had one of those instant connections. In reality, we've only known them for about a year but it feels like we have known each other for a lot longer than that. They too, are an awesome mother/daughter team. We each have different medical issues but at the end of the day, there are a lot of crossover similarities with the struggles we deal with.  Both the mom's get each other, and so do we as the patients. We all have a very good understanding of one another, and the struggles that come along with chronic medical issues. It's not every day that you meet someone that "gets you". When you do find those people, you cherish them because you feel less alone.

Our mother/daughter duo friends.

As always, if you have EDS, are in a halo brace, and want to communicate, you can email me at kingmeg19@gmail.com

* *If you have a Facebook account, click here and "LIKE" my page: Meg's EDS Medical Journey
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Recovery at Home Post Neck Fusion

NEW! People You Should Know Podcast: 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.


Surgery. If you've ever had one done, then you know it goes through a process leading up to the big day. You get a diagnosis. You get told you need surgery. You prep for surgery. You have your surgery, and then it's time to dig deep, and begin the recovery process that nobody really says what it will be like; unless you consider, "You'll feel some discomfort" a good understanding. If you've had multiple surgeries then you know that not all surgeries have the same recovery. Some surgeries have a fairly easy recovery, some are in the middle, while others are far more difficult. This was my first spinal surgery, and now that I was home, it was time for me to experience first hand where I thought this recovery would land on the scale of fairly easy, medium, or hard. 

http://sadmoment.com/inspiring-quote-on-being-strong-fighting-through-the-pain/

April 19, 2016
It was day one of being home from the hospital post neck fusion. As expected I had a long night. I slept in my recliner in my room because I could get out of it easier than my bed. Even though it was a long night, I did get more sleep at home because there weren't nurses coming in every few hours to check my vitals. There wasn't the background music of various alarms going off at all hours of the night from patient's rooms. I was glad to be out of the hospital. After all of the surgery that I've had done, I have my own routine down at home. I have things set up in such a way to make life a little easier for me. Of course things were difficult, but it was nice being around the comforts of home. My first day home consisted of me primarily sleeping. After surgery, all of your body's energy goes to healing the area that just experienced the trauma. The best time when this healing takes place is when you're asleep. Any left over energy is what allows you to stay awake.  Needless to say, I didn't have a lot of leftover energy that day. 

Nap in the middle of the day. You can never have too many pillows after surgery. As expected, that's my dog Daisy in her usual spot when I'm post-op. She's always by my side and was giving whoever took this picture the, "What do you want?" look. 

April 20, 2016
April 20th was similar to the previous day, minus the fact that I got my halo brace stuck in the blinds. Yes, you read that correctly. I got stuck in the blinds. One thing to know with the halo brace is you're not aware of your surroundings at first because the brace is quite large. It was evening, and I was getting myself ready to go to bed. I walked over to my window and leaned over to close the blinds. I didn't realize when I leaned over I got one of the strings tangled in on one of the screws. I couldn't reach my head because of the shoulder injuries, and I couldn't reach my phone because I was stuck to the blinds. This meant I needed to yell out for some help.

From my room I yelled out, "I need help!" My niece Lizzy yelled back, "One minute!" to which I responded, "No, now!" Lizzy came into my room and started laughing...honestly, how could you not? I told her I somehow managed to get myself stuck in the blinds while trying to close them, and I needed her to untangle me. Unfortunately, Lizzy couldn't reach. I told her to get Kelly (my sister). Kelly said the same thing too, "Wait a minute!" I told Lizzy to go in the hall and say, "No! You need to come right now because Meg's halo is stuck in the blinds!" It's amazing how fast somebody comes to your rescue when they realize you're stuck. Next thing you know my sister and my dad are in my room. Kelly was untangling me, while my dad was in the background laughing, along with my niece, and my sister. I too was laughing, but also crying at the same time because I hurt and was irritated that I was stuck. Who knew closing the blinds could be so complicated? I told my family they better get a picture of this because I might be mad in the moment but I will laugh at this down the road. To this day, I still laugh at the day I got stuck in the blinds. 

Fortunately this has been the ONE and only time that this has happened. Haha memory making at its best.

April 21, 2016
There wasn't much rest on this day until the afternoon. As I mentioned in the previous post, I was having trouble being vertical because of the weight of my left shoulder blade pulling on my neck, and I ended up making a sling out of a bed sheet with my sister in the hospital to support my arm. On April 21st I had an appointment to get fitted for some custom braces to support my arms. My appointment was in the morning around 9:00. Early morning appointments are always rough after surgery. It takes a lot of effort, and energy to get yourself up, dressed, teeth brushed, hair back, food in your stomach, and all that good stuff. By the time it was time to leave for my appointment I was thinking it was time to take a nap. 

Almost time to leave. My dad putting my hair up in a ponytail. I think this is one skill in life he never thought he was going to master. 

This is as good as the hair styling is going to get. Nice job dad! 

When my mom and I arrived at the office where the arm braces were going to be made, I didn't know what to expect. All I kept telling my family, and the doctors at the hospital, it that I just need something to support my left arm so I could walk around easier. Thankfully the man who made my arm braces (Thomas) had been working on it already for a couple days. He had an idea to support my arms by essentially making arm rests. This wouldn't put any weight on my neck, and it would still allow me to have some function at my elbow and hand.  

Thomas taking measurements around my waist so he knew how big of a waistband he needed to make

This was the prototype for the arm rest. Since it helped my left arm, Thomas said he would have the finished product done in a couple days. He was also going to make a brace for my right arm too.  

After my appointment I was more than ready to go home but told my mom we should stop at the nursing home first to see my grandpa. We were only 10 minutes away anyways, and I hadn't seen him in 2 weeks. Up until a few months ago my grandpa had lived with my family and I since 2007. He had some medical issues this past February which caused him to have to stay at a nursing home so he could receive proper care. So, I felt it was necessary to stop by and see him so he knew I was okay, and wasn't worrying too much. My grandpa is blind so he has absolutely no idea what type of brace I'm wearing. The best description that I've come up with, is that it's like having your head in the middle of a birdcage. To this day I don't think he totally understands it which is good. I don't really want him to know what I'm in. He doesn't need to worry any more than he already does. 

Touch is important at all ages. I told my grandpa he couldn't hug me like normal because I didn't want him to bang his head on my brace & it was painful for me to bend over to hug him, so he held my hands instead. 

Some things are worth not feeling good for. This is one of my new favorite pictures of my grandpa and I. 

After visiting my grandpa, my mom and I went home. As much as I wanted to sleep I first had to eat lunch. I knew if I didn't, I would end up feeling sick from the pain medications, and I also needed to eat to get the calories in me. The halo brace is an additional 7 lbs. so even when you feel like you're not doing much, you still are doing more than you think because you're carrying around the extra weight. After lunch I pretty much slept the rest of the day. 

Picture of my nieces and I later that day. They were happy to help me open up a
"Get Well" box that was sent.

April 22, 2016

It was a day of putting on movies, falling asleep during those movies, and then putting on a different movie to only fall asleep again. I was exhausted from the day prior. In the evening I forced myself to get up and walk outside to get some fresh air for 5-10 minutes to move my legs but it was the last thing I felt like doing. 

Beginning of the short walk. I used a blanket as a coat since my coat doesn't fit over my brace. 

Heading back to the house with not as much pep in my step. One thing I never thought would hurt was the cold wind brushing my forehead where the screws are inserted. Who knew?  As soon as I got home I changed into my pajamas and went straight to bed. Tomorrow would be a new day.

I think this is important to remember:

If there is anybody that has Ehlers-Danlos Syndrome (EDS), is in/was in a halo that would like to connect, please feel free to email me at kingmeg19@gmail.com

* *If you have a Facebook account, click here and "LIKE" my page: Meg's EDS Medical Journey

** Follow me on Instagram: https://www.instagram.com/thetravelinghaloofhope/