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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