Monday, January 15, 2018

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 

* *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/


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 PodcastI 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. 


Tuesday, April 4, 2017

Recovery Post Craniocervical Instability (CCI) Surgery

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. 
*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.

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. 

Saturday, February 25, 2017

Surgery for Craniocervical Instability (CCI): Part 1


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.

WARNING: I'm not going to sugar coat anything with this post. I'm giving full warning this is a post that might be difficult for some to read. To be completely honest, this post wasn't the easiest for me to write because what happened was traumatizing. In fact it has been the scariest year yet. There need to be resources though because there are many people in the EDS (Ehlers-Danlos Syndrome) communities who need this surgery. I think it's important to write about so people can ask questions. I also think it's really important for them to be able to read about this surgery from a patient's perspective. I know I would have liked to read about someone who went through this. The thing to keep in mind and remember is everybody has different experiences with this surgery. This was mine. I'm giving full warning there is one graphic picture from surgery. I will give ample notice before you get to that photo. 

August 25, 2016 It was halo removal day, and I was 100% horrified because I felt my skull slide forward in May 2016 when I was being fitted for my CTO (cervicothoracic orthosis aka a really sturdy neck brace). All that kept going through my head was, "What is going to happen to me when all the bars to the halo are removed?" My appointment was at 9:00 a.m. In the car I put music on to try to distract my brain, in addition to doing a word search puzzle as we made our way to Chicago. It wasn't working well when my CTO was sitting directly to my left. When my parents, and I arrived at the hospital, Every. Single. Step. was filled with much dread, and fear as I walked the hospital hallways leading to my neurosurgeon's office. The nerves were making me feel so sick to my stomach. 

As I waited in the lobby for the medical assistant to call my name, the anticipation was building like one getting ready for the first giant drop on a roller coaster. When my name was called, I wish I could have sprinted the other direction. I did not want my halo removed. I didn't run; I reluctantly walked back to the room. Shortly thereafter, Dr. F walked into the room with his neurosurgery fellow (Dr. V), and a medical student. 

Before starting the removal, Dr. F discussed the process to my mom and I. They would loosen/remove the bars, the vest, and get me into my CTO. I told Dr. F I did not have a good feeling, and didn't want my halo removed. He said I've grown an attachment to my halo because it has helped me so much, and then jokingly said I couldn't keep it on forever. I voiced my concerns but the only way we would know for sure if I was unstable was to remove my halo. Dr. F asked if I brought my CTO and I pointed to the chair. At that, Dr. F moved a chair to the center of the room and had me sit down.

I reluctantly sat on the low back chair directly across from my mom keeping eye contact with her the entire time. My hands were clammy, and my heart felt like it was going to pound out of my chest. Dr. V started to unloosen the bars while Dr. F went to grab an extra wrench since I accidentally forgot mine. In the time it took Dr. F to grab the additional wrench all hell broke loose. When Dr. V loosened the final bar I felt my skull-C2 slide into my throat. I simultaneously started gagging, and flew my L hand to my chin to shove my skull backwards. I then tilted the chair on its back legs to let gravity keep my head back. Dr. V asked what was wrong, and told me not to lean back so I don't fall. When I could finally speak, because I was crying & couldn't catch my breath, I told her I'm leaning the chair back to allow gravity to help keep my head back because I felt something slide forward. She asked me to bring the chair forward and when I did the same exact thing happened; I felt my skull-C2 slide, I started gagging, I pushed my skull back with my L hand again, and leaned the chair back. She then tightened the back bars again on my halo. Dr. F came back shortly thereafter. I looked at my mom with panic, tear-filled eyes; she looked back at me the same way with panic (minus the tears or else they'd have her leave the room).

This is not a video of my neck. I found it on Youtube. This "just" shows instability at C1-C2. This is exactly what I felt if it showed the skull sliding forward too. Pleasant, right? (Not a graphic video. It's just a movement X-ray) Video of: C1-C2 Instability Video

When Dr. F came back in the room, he was not prepared to see me in tears. In a very concerned voice he asked, "What's wrong?!" Dr. V told him that I felt slippage in my upper C spine, and I started gagging. Dr. F had a significant look of concern on his face. He said we have to loosen the bars again and remove the vest to see if I could withstand the CTO brace. He came on my left side, while Dr. V was on my R side, and they loosened the bars. Yet again my upper C spine slid forward, I shoved it back, and leaned my chair backwards. At that point Dr. F immediately came behind me and held my skull up as Dr. V got me into my CTO brace. When it was on, Dr. F let go of my skull. I went back to leaning my chair backwards because I started to gag again. It was then when my mom told Dr. F that I've been nauseous every time I eat, I throw up every time I brush my teeth (not from hitting a gag reflex), I'm burping constantly, and I always have the hiccups. Dr. F found this information (which I told my mom not to mention because I didn't think it was a big deal) quite interesting. He said those symptoms indicate that my nerves are hypersensitive in my upper C spine. After a couple minutes of being in the CTO brace, my R shoulder started to tremor/shake. Dr. F saw this, and said he wanted to see if I was able to stand/walk. 

When I heard the words, stand and walk, come out of Dr. F's mouth, my body filled with trepidation. I told him there would be shaking down my R leg like I got when my skull slid forward in May. He said he just wanted me to try. Dr. F was on my L and Dr. V on my R. I was in the shoulder brace that was made in MN so they couldn't lift me easily. I pushed myself up with my L leg, and the R side of my body felt completely disconnected. I had weakness. My R leg was spastic and shaking all over the place. I couldn't put weight on my R leg, and couldn't even get my body upright. I was so scared because my symptoms had never been that bad before. Dr. F and Dr. V both grabbed me under my arms to get me back into the chair. Then all of a sudden I had the hiccups, and started burping. I started to cry...again. To say I was overwhelmed is the biggest understatement ever. I think I scared the medical student too. She looked horrified as all of this was happening.

This was my walking on June 2, 2016. This video, of me, is absolutely nothing in comparison to what I experienced August, 25, 2016 Neurological Symptoms Down R Leg

After this series of events unfolded, Dr. F put me back in the halo brace, and explained what was going on. He said my craniocervical junction is very unstable, and my muscles/ligaments are too weak to support my head/upper C spine. I was given two options 1.) fuse the rest of my neck (skull-C2) which would mean I would never have mobility in my neck again, or 2.) wear the CTO brace, do physical therapy, and IF everything went according to plan I could maybe get a year at most before being back in surgery. I told Dr. F if surgery was inevitable then just do it and be done. In my head I was thinking, "My skull keeps sliding forward, I'm getting neurological symptoms, and I can't even walk". Dr. F had me come back in the afternoon so I had time to process everything, and let him know what my decision was.  

When I went back to my appointment in the afternoon, Dr. F didn't really give me an option. He said surgery was needed, and I agreed with him 100%. Surgery was set for 5 days later. Talk about a crazy week. Drive from Colorado to Minnesota. Be told you need scapula surgery. Drive home. See Dr. F the next day. Find out you need neck surgery again, and then have it 5 days later. I emailed Dr. E my shoulder/scapular surgeon about what had happened, and he said he was scared about that, and wished me good luck. 

In hindsight I wish I had a short video of this day as words don't adequately describe how horrible this day way. 

August 30, 2016 It was surgery day...again...number 27. It's not possible to write every thought that was going through my brain. I was so scared though. When I had my halo application April 5, 2016 I never thought it would be the last day I would move my neck again. This surgery held significantly higher risks than any other surgery I've had. I knew I needed it though. At this point, all I knew was a plate was being secured to the back of my skull with screws and C1 and C2 would be stabilized. I didn't know how far down the fusion would be because Dr. F had to connect the new hardware to my hardware from four months prior. 
At my first appointment with Dr. F he told me he loves dark chocolate. Before this surgery my parents, and I stopped in the hospital cafeteria and bought some 80% dark, sea salt Ghiradelli chocolate. This made him a very happy man. This picture was right before meeting the amazing anesthesiologist, and being wheeled back to surgery. To my surprise, the med student who was at my appointment on the 25th was shadowing anesthesiology this day. My parents and I were told Dr. F had the OR booked long, and to expect a pretty long surgery. 
These two have been by me for every surgery. I'd be lost without them. I can a see their nerves when I look at this picture. 
Very appropriate quote right before being wheeled back to surgery!


The time had come where I was wheeled back for surgery. I told the anesthesiologist I did not want any amnesia meds beforehand. I like to remember knowing I was brought back to the OR. Getting me intubated was extremely hard. I was still in the halo, but now I was hard fused C3-T2. They gave me some meds to relax me but EDS patients tend to metabolize them a lot faster. The doctor used a camera to get the tube down my throat. They covered my face with a drape, but not enough to cover my eyes. The anesthesiologist was showing the med students where my vocal cords were on the monitor. As he explained, I listened and watched. I found it pretty fascinating. Then they went to put the tube down my throat. Before doing this they numbed my mouth, and back of my throat. They tried intubating me 5 times that I remember before I grabbed the anesthesiologist's hand, and said to versed me (amnesia meds). I was gagging so bad, and it was throwing my shoulder blades out, and I was feeling my muscles tear from them. I started crying because the pain was so bad. That's the last thing I remember before waking up in ICU. Pain. Lots and lots of scapular pain. 

When I kind of came too, I knew there had been issues getting me intubated. I still had a tube down my throat, but my eyes were shut. I was so sleepy. I heard a voice to my left, which I found out later was Dr. F, who told my parents he was going to keep me sedated all night. As soon as I heard those words I knew things were different than surgery in April. The next thing I knew it was morning because the medical staff was reversing the sedation, and I was waking up a little bit. 

August 31, 2016 I was alert but was confused. My wrists were tied to the arm rails of the bed (not because I was being combative). At first I didn't know why they were tied. Then I realized I was still intubated. I couldn't talk, and I was panicking. I'm sure my eyes said a lot. The tube makes you gag. I looked at my mom to see if she could get the restraints off me. She talked to the nurse, and reassured them that I wouldn't pull the tube out of my mouth. Fortunately they untied my wrists, but they kept their eyes on me like a hawk...which is what they do in ICU. The vent was obnoxiously annoying making this whooshing/squeaky noise as it pumped my body full of oxygen. 

Might be hard to tell but I'm fully awake in this picture. Before the tube could be pulled, I had to prove I could breathe on my own for 30 minutes. Every time I stopped breathing the clock started over. It was incredibly hard. I lost track how many times the clock was restarted. Every time I'd doze off to sleep I'd stop breathing. Finally, I succeeded and they could remove the breathing tube. 

Complete relief, and exhaustion that the breathing tube was out. It hurt so much to get the tube out, and to get the "sticky pads" off my cheeks, and back of my neck. As soon as the tube came out I had to say my name. I didn't have a ton of surgical pain...yet. I was still pretty sedated, on heavy pain meds, and slept the majority of the day. 


This is the cartoon version of what I had installed. Directly below this picture is an actual surgical picture. If this type of thing grosses you out, keep on scrolling past. 







Top is my skull with a plate attached to it. This was a posterior craniocervical fusion. C1 has wires around it. The new hardware was attached down to C5 which is directly below the bronze horizontal piece. The horizontal crosspiece adds additional stability. 





X-ray of my brand new hard fused neck skull-T2...24 screws later, 2 new wires, a plate attached to my skull, and two rods. Surgery was 7 hours long.
The x-ray below is what my neck looked liked before this most recent  fusion. It looks alien-like or something futuristic to me. 

This is where I am going to wrap up this post up. I'm going to have to break the CCI (Craniocervical Instability) Surgery into more than one post because there is just too much to write about with the hospital stay, and what occurred in the coming days. Keep your eyes out for part 2.

To all my friends who are fighting, recovering from surgery, raising funds to get this particular surgery KEEP FIGHTING. You have many people rooting you on, and it will get better! Feel free to ask questions :) 

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