Tuesday, February 28, 2017

Part 2: Craniocervical Instability (CCI) Surgery

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.

September 10, 2016
It was my first day home from the hospital since having surgery for craniocervical instability (instability from your skull-C2). For me it was extended to C5 to align the hardware from my previous fusion. It was an extremely hard but fun day. My brother and my nephews were in town that day. I hadn't seen them in a few months since they live out of state, and I would do anything to spend time with them; even if that meant feeling quite horrible. Before they came over I slept, and when they got to the house I took all my medicine so I could enjoy my time with them. My nephews had never seen me in the halo brace before. Once again, the halo is a bit scary to little kids. I thought in advance and had my sister go to the store to buy stickers. When my nephews were hesitant to come by me, I told them I have Ninja Turtle Stickers and I needed help so I look like a superhero. That worked perfectly!
This was after they put stickers all over me inside the house. There was no way I was going out in public like the picture below...
Not only did we use stickers, my nieces put pipe cleaners on my halo to make it look I had antennas; I had quite a look happening!!

This is my brother and I. The picture on the left is a normal picture, and somehow between that one and the one on the right I had a sticker on me again and "antennas". I took one of the stickers off and stuck it on my brothers forehead. I told him if I have to look ridiculous, then he does too. It was a good time. After my brother and nephews had left I went inside and took a nap the rest of the day. I was so tired, and had a lot of pain in my neck. It was worth it though.  
September 11, 2016
I got my first real look at my incision. I absolutely hated the way my hair looks in this picture. My sister washed my hair and braided it for me yet again so it wouldn't get stuck in my halo. It's important to point out there are people both young, and old, who tackle this hair issue daily due to various medical conditions that they endure. My hair issue is minuscule in comparison to others. I knew part of my hair was going to have to be shaved going into surgery. There is no reason to hide behind the things that make us uncomfortable; just be yourself. Those that know, and respect you will look beyond the physical. I will admit, seeing this incision was hard for me to look at compared to other ones because it triggered memories of when my mom had to shave her hair when she had cancer. In order for me to get better they had to shave a portion of my hair to stabilize my skull to my spine. 
In the end it's just hair, and it will grow back but I hated the way this looked. There's a lot to overcome when you undergo spinal surgery. 

September 14, 2016
Like most of the other days it was just a typical recovery day. I slept so much after this surgery. My body was weak. My neck hurt, my shoulders/scapulas hurt, and it was just rough. On this day I had a much appreciated "pick me up" that came in the mail. I got a surprise package in the mail from a friend. The theme was Finding Dory, and to "Just Keep Swimming". Some days you feel defeated, and you have to keep pushing forward, and hope things will improve. The Dory water bottle goes with me everywhere. My physical therapists love it. It's little things that can be constant reminders to keep pushing forward, even when you don't want to. 

September 15, 2016
I had a post-op appointment in Chicago with my neurosurgeon Dr. F. I told him the pressure at the back of my head was horrible whenever I was upright, which was making it really difficult to be upright. I also informed him that my neck was making a lot of creaking noises, and it was driving me nuts. Dr. F said the noises in my neck are normal because the bone matrix isn't completely fused yet, and he thought the pressure in my head would get better as the swelling from surgery went down. I told him I was going to be going back to Colorado to see if the climate is more agreeable. Illinois was so humid at this time, and high humidity doesn't agree with my body at all. He said it was just fine that I go to Colorado, and suggested I drive versus flying because I wouldn't be able to be upright all day. If everything went according to plan, the next time I would see Dr. F would be halo removal day which was set for December 1st!

September 16, 2016
One of the important things to do after any surgery is to walk. It's something the staff at the hospital gets you doing fairly quickly depending on what kind of procedure you have done. Despite the pain, you have to walk in order to stay somewhat strong, and prevent blood clots. When you don't walk you become deconditioned, and it's an uphill battle to get those muscles strong. After my scapular surgery in January 2015 it was so hard to walk because of the undiagnosed neck injury, the L scapular surgery itself, and the injuries to my R shoulder/scapula. I wasn't able to walk as much as I should have because I couldn't get myself upright. About 4 months after that surgery walking became easier. It took a lot of work to get my legs, core, and upper body etc. stronger again. 
An early evening stroll with my niece Emily and dog Daisy. We didn't walk far but it was enough to get my legs moving. My niece was recovering from surgery on her hand so we were surgery buddy's again. We were surgery buddy's in 2008 when she broke her elbow. 
September 18 & 19, 2016 
I've always said it for a long time but pets are great therapy and they're in tune with how we feel. Daisy the dog is the best medicine. She is always by my side, and comforts me. Recovery at home was so hard. The recovery from this fusion was different than my last fusion. How? Head pressure. From day one there was always a lot of pressure at the back of my head. There is a lot of humidity at this time of the year too. 
Daisy laying on my lap and providing comfort. 
September 19, 2017: In case you couldn't tell, Daisy is the biggest baby on the planet, and she will cuddle with you to make you feel better. The pressure in my head was so bad this day. At the same time, the weather was nice outside. Laying flat was most comfortable. I brought some pillows outside so I could get some fresh air. My neck was creaking like a door in a haunted house, and was driving me insane. My mom happened to get this picture when I was totally unaware. This wasn't a staged picture at all. 
Sometimes being brave isn't always a choice. When you need a surgery that will save, and improve your quality of life you do what you have to do. 
September 21, 2016
September 21, 2005 was the day my life changed forever. It was the catalyst that made Ehlers-Danlos Synrome (EDS) apparent. When I landed wrong and blew out my ankle, it set off a domino effect of injuries due to the inability to exercise like I was. So September 21, 2016 was my 11 year anniversary since life changed. The thing I miss the most is not hurting every. single. day. I'm sure there are many with EDS who can relate to that. I don't even know what it's like to NOT hurt anymore. Hurting has become my normal, and it gets really old putting on a "happy face" to hide the pain. I miss being able to do whatever I want, when I want, and not paying for it for days on end. I miss waking up and feeling rested, and just doing activities of daily living without a struggle. To those in good shape, never take your independence for granted. 

Despite all the things I miss, there HAVE been a lot of good things that have come out of this crazy medical stuff. I found my hidden talent to draw. I found I enjoy writing/sharing my story to encourage others; I've emailed/met so many people from all over the world that have enriched my life. I love learning about orthopedic surgeries, and medical things (hence the reason for always asking for surgical pictures). I found I can deal with a lot more than I ever thought possible. I'll admit though, it gets old having to deal with the ongoing medical. Somehow I do it; as do many others. 
Picture on the left is playing soccer 10+ years ago. Picture on the right is from the summer on top of a mountain at over 12,000 ft.

* *If you have a Facebook account, click here and "LIKE" my page: Meg's EDS Medical Journey
* *If you have questions, just leave a comment. 
*Please SHARE. There is NOT much information on Craniocervical Instability (CCI) at all. People who are symptomatic need to be more aware, and especially medical professionals. It's far too common for people with EDS to develop CCI and there aren't enough specialists that treat both. Sharing spreads awareness about EDS (Ehlers-Danlos Syndrome) CCI and life in a halo. I know there are many who would appreciate it. 
* *You can also follow me on Google+
** Follow me on Instagram: https://www.instagram.com/thetravelinghaloofhope/
* *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. 

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