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.
Costume Number 2: Regina George from the movie Mean Girls
Costume Number 3: Christmas Spirit
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.
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.
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...
** Follow me on Instagram: https://www.instagram.com/thetravelinghaloofhope/
**Facebook: Meg's EDS Medical Journey: https://www.facebook.com/MegsEDS.MedicalJourney/
**Facebook: Meg's EDS Medical Journey: https://www.facebook.com/MegsEDS.MedicalJourney/
* *You can also follow me on Google+
* *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.