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, you can search and "LIKE" my page, Meg's EDS Medical Journey for current updates.
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*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. 
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Tuesday, February 28, 2017

Part 2: Craniocervical Instability (CCI) Surgery

Warning: Just like part one of the Craniocervical Instability Surgery, this post isn't sugar coated either. I think too many times people sugar coat the reality of a situation. That doesn't do any of us any good when we go in to have a surgery and have a certain level of expectations, and are met with something completely different; like when those pamphlets say, "You might wake up with some discomfort" yeah...ok, how about maybe saying you'll experience a lot of pain that'll make you want to rip your hair out haha. So you know, there is one incision picture. As always I will let you know ahead of time in case you do not want to look at this. I know not everybody likes these types of pictures. I have people in my family like this; cough...cough...my dad and my brother. They'll still look anyways to amuse me though. As I said last time, everybody has different surgical experiences; don't let mine completely influence you. Ehlers-Danlos Syndrome (EDS) treats us all differently. 

September 1, 2016 I was still in ICU. To those that have never been on an ICU floor before, first off, kudos to you!!! If I had to describe ICU in one word, it would be noisy. There are alarms going off constantly; whether it be from your room or somebody else's. It is controlled chaos. The medical staff is on top of everything, and make sure you're taken care of. The ICU nursing staff was fantastic. They were on top of my pain medication, re-positioning me (since I couldn't/can't push off with my arms) and just being supportive. I am very much appreciative of all of them. Later that evening I was transferred to the neurosurgery floor.
With as horrible as I looked the day before this was a big improvement. I was no longer sedated. Instead I was on a lot of heavy pain killers, and had a pain pump that was hooked to a button. When they do a craniocervical fusion, they have to cut a lot of the muscles on the back of the neck. This caused me so much pain because my muscles were already detached from my shoulder blades. Between my neck and shoulder blades, everything was freaking out with pain, in addition to muscle spasms. Every time the pain started to intensify, I would push the pain button, and a dose of medicine would run through my IV into my bloodstream. To those that may be wondering, my head is not turned like it appears. It is straight. It looks like it's turned to the right due to the way I was laying. 
This picture was from the day before. Talk about a big difference compared to the picture above. This picture was an attempted smile. You can tell, right? 
One of the good things from my room in ICU was that I had a beautiful view of the Chicago Skyline. Since I couldn't turn my head, I had my mom or my dad take a picture so I could see. 
Chicago Skyline 
The only downfall of leaving the ICU was leaving this view. It's okay though. Getting off the ICU floor means that progress was being made slowly but surely. When I got to my new room, my mom noticed that one of the doctors had written the word, HOPE on my incision bandage. If you didn't notice before, I had the word HOPE on the front of my halo. During surgery they had to take the letters off because the center hole on the the front of the halo ring needed to connect to the device in the OR to hold my head in place. 
HOPE
As you can see, the word, HOPE is on the front of my halo. I put it there as a daily reminder every time I looked in the mirror. There is hope that things will eventually get better. It might take a long time to get to that point but hopefully one day it will. I don't expect to ever feel normal, but I do think things can improve from where they're at currently. You'd be surprised how many people asked me if my name was Hope. On my lap is my niece Emily. 



September 3, 2016 It was a happy hospital day because my dad brought my service dog Daisy to come visit me. She is my fur baby and is spoiled rotten. After all my recent surgeries one of the first things I always say is, "I want Daisy." Pets are great therapy when you're in pain because they're a great distraction. 
After being separated for a few days, Daisy was a happy camper to lay by my side. She even looks happy in the picture. 
September 4, 2016 Nothing too exciting was happening. It was just another day of continuing to recover in the hospital. I will say, we won the medical staff over. My mom bought some Reese's Peanut Butter Cups and put them on the counter. As every medical personnel, food service, or janitor came into my room we offered them candy. You'd be amazed how much food wins people over. 
And here we have Miss. Daisy completely passed out. 
September 5, 2017 This was the day I was supposed to be discharged, and sent home. Unfortunately this did not happen. I was experiencing a lot of difficulties with walking due to shaking/tremors in my R leg. I was also experiencing a ton of pressure inside, at the back of my head. When the residents came in to check in on me, they thought readjusting my halo would possibly help alleviate the walking challenges that I had. Instead of helping, it made me worse. It messed with my balance and I kept falling over to the right. They had me sit down to readjust my halo again, and decided that I should just lay in bed to see if there is swelling from the surgery that needs to calm down still.  
Thumbs down! Not a happy camper that I couldn't go home. 
The pressure at the back of my head was so painful and exhausting. Thankfully the pain meds that I received was helping me at least sleep. To those that don't know, when you're in a halo your jaw automatically drops down. It's just the way it is, and isn't the attractive Sleeping Beauty. 
September 6, 2016 Dr. F stopped by in the morning to see how I was doing since it was relayed that I was having a lot of pressure at the back of my head. When he walked in and looked at me, he noticed my head was not straight which could have been contributing to some, but not all of the pain. He came over by me and loosened the bars to make my head straight. It was a celebratory moment because unlike 12 days prior, my skull-C2 did NOT slide into my throat. HOORAY!!! Since I was having ongoing issues though, Dr. F was ordering an MRI to look at my neck. 
My favorite nurse and I. She had been nurse every day since being admitted onto the neuro floor.

My mom insisting on taking a picture of me on while I eat breakfast.
Late that night, I was brought down for an MRI at 10:00. In all honesty I think I passed out during the MRI. It was extremely loud and echoing off my halo like a jackhammer, and I couldn't stand it. I remember two times the tech saying, "Megan, Megan...are you okay?" Eventually I came to, and said I was fine. He then said, "Should we continue with the test?" and I said yes. As soon as that jackhammer sound started echoing again, I passed out. It was horrible. The noise physically hurt my brain, and I couldn't stand the extra pressure. I didn't get back to my room until after midnight. At that point I was in much need of pain medication. 

September 7, 2016 I didn't feel good and the head pressure wasn't subsiding. I was up early, and watched the beautiful sunrise. There is beauty, and good things in every day. Even if it's in the hospital. Sometimes it's having a conversation with the staff that brings you your lunch, conversing with the nurses, or looking out your hospital window. 
Sunrise over Lake Michigan
September 8, 2016 I saw Dr. F again. He's a very good neurosurgeon and frequently stopped by to check in on me. He said my MRI looks okay. The pinpointed spot where I had bad pain on my back, left side of my neck, seems to be a new screw that's pushing into my muscle. Dr. F thinks once the muscle isn't so atrophied, that particular pain should get better since the screw won't be able to push into the muscle as much. At this point everything was so atrophied that I could feel the hardware when I'd touch the back of my neck.

One of the symptoms I had been getting is a lot of grinding/crunching where the new fusion is. It was really quite nauseating which had been concerning me. It sounded like a creaking haunted house door. Dr. F wasn't overly concerned. He used a different bone chip matrix in this area of my neck, and until it fuses, I will hear unpleasant noises. 

Dr. F decided to keep me in the hospital another day or two to keep an eye on my blood pressure, and the bad pressure at the back of my head because my blood pressure was high on this particular day. My blood pressure was 153/106 and my pulse was 120 bpm. I have zero history of high BP so he wanted to watch it. With the pressure at the base of my skull, Dr. F had ideas if it didn't subside, but he didn't share with the crowd what those ideas were. Fortunately the shaking in my R leg slowly got better. It could be stemming from the halo adjustment, or it could be running its own cycle. Regardless, I was so happy that the walking became easier. 

When Dr. F was in my room he said I would be in the halo a minimum for 2 more months so the fusion can heal well. This meant my scapula surgery wouldn't be happening anytime soon. I was really looking forward to getting it fixed sooner than later because the pain was so bad, but it was more important for my neck to heal; after all, you only get one spinal cord. 

Over the coming months Dr. F said my body will be adjusting A LOT to this neck fusion with losing all mobility. It was a million times safer to do this surgery though in the long run. Of course I will miss having mobility, but I will NOT miss the feeling of my skull and vertebrae dropping into my throat; it brought bobble head toy to a whole new meaning. 

Dr. F also had a gift for me. He came by my bed and excitedly said, "Look what I brought you!" I asked what it was and he said, "It's part of the hardware I had to cut out of your neck. I thought you'd want it!" I told him he knows me well. Of course I wanted it!! Makes me chuckle that I have the colors purple, teal, bronze, silver, and black in my neck. 
Lateral neck xray showing hardware
* * * * * BELOW IS AN INCISION PICTURE * * * * *





This is a portion of my incision. With my previous fusion from April 2016, my incision goes down to about T4/T5.



September 9, 2016 My blood pressure had stabilized, sooooo it was discharge day!! Dr. F came by and said I could stay longer if I wanted. I appreciated the offer but I didn't want to be in the hospital any longer than I had to be. My mind was more at ease knowing that my MRI came back okay, and there wasn't an issue. When you're worried there is a problem going on, it makes you scared to go home. That morning I woke up to another beautiful sunrise. People that know me know that I'm a sucker for sunsets but I also love to see the sunrise. 
Something beautiful to look at to start my day
Walking the halls with my sister Kelly. We're standing in front of the room I was in back in April 2016. The quote on the door says, "Put Your Best Foot Forward" 
Dr. F and I. Thank you will never be enough to express my gratitude for him. He even brought me some Israeli chocolate as a, "Get Well Soon". It was delicious.

On the far left is the fantastic anesthesiologist Dr. G. The other three are all med students. On the far right is the one who was at my halo removal; she's the one I think I scared. Dr. G was great though. Typically you only see the anesthesiologist the day of surgery. Dr. G came came and visited me twice. The one time he sat on the couch and hung out for 20 minutes. He gave his pager number so the next time I'm at the hospital I can say hello to him. Another time he stopped by he had heard there was candy so he came by to say hello and grab some chocolate. 

Two thumbs up my mom, sister, and I made it home. You can't have enough pillows!! It was one really bumpy ride home. 
Finally home, and off to bed...with Daisy
Never did I think my life would be like this. EDS was the biggest surprise that flipped my life upside down. To this day it amazes me I never recovered from my initial injury, and never got back on the soccer field due to all the surgeries I ended up needing. I had a plan for my life. Apparently that plan wasn't the path meant for me. If it weren't for the EDS and various issues I wouldn't be able to write and bring awareness about the craziest journey I have ever been on. If I can help one person by writing, then it makes me so incredibly happy. Make sure you enjoy the little things in life. The little things will fill your life with much enjoyment. 



To all the people with EDS, other connective tissue disorders, or just people who may have craniocervical instability, or cervical spine instability in general, LISTEN TO YOUR BODY! I was literally told months before getting to Dr. F that I needed psychiatric care. Then I got to Dr. F, had the proper imaging and learned how precarious my situation was. I never went to a psychiatrist. I listened to my body, and because of that I'm still here. Dr. F literally told me I'm a very fortunate woman that I am still here because it was only a matter of time before my head would fall off. Horrifying words to hear, and it effects you mentally. It's like a PTSD. I will not allow EDS to keep me knocked down. I will keep fighting even when there are a lot of tears shed because life with EDS is so hard. 

My next post will be about the start of recovery at home...

* *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+
* *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. 
* *If you have a Facebook account, you can search and "LIKE" my page, Meg's EDS Medical Journey for current updates.

Saturday, February 25, 2017

Surgery for Craniocervical Instability (CCI): Part 1

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 :) 

* *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+
* *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. 
* *If you have a Facebook account, you can search and "LIKE" my page, Meg's EDS Medical Journey for current updates.

Thursday, February 23, 2017

Traveling Halo of Hope

Anybody that reads my posts knows that I try to incorporate fun into my life to offset the medical. They would also know that despite whatever brace I'm in, I will still leave the house and go about life as much as I can. This was no different in a halo brace. The only difference is it much harder due to being self-conscious. I would put my sunglasses on and pretend to be invisible like in the movie, "Big Daddy". This post is a bit different than my previous ones because it's kind of a "dull" period and there are many pictures that show me going about life in the halo. 

When I had my appointment with my neurosurgeon, Dr. F, it was advised that I drive to Colorado instead of flying because I was having a really difficult time being upright. Driving to Colorado would give me the ability to recline my seat back, and prop with pillows. July 18, 2016 was the day my mom, nieces, and I set off on our adventure. That night we stopped on the west end of Iowa, and the girls had a fun time swimming in the hotel pool. That's one of the downfalls with the halo. You're not allowed to go swimming, take a shower, or do any activity too close to water that will potentially get the lining of your halo wet. If the lining gets really wet then it might have to be changed because it can get smelly, moldy, and irritate your skin. This never happened to me but I would imagine it is not a pleasant situation; especially since it's hard to scratch under it as it is. 

July 19, 2016 It was day two of our drive. That night we would be at the west end of Nebraska. On our way we stopped at an attraction in North Platte that goes over the highway. This historical audio attraction that Disney painted inside discusses how the settlers in their Conestoga wagons made their way west to Colorado. It also discusses how the railroad and train changed access across the country. 
The attraction literally goes across the highway!
This is Lake Mcconaughy. It's in Ogallala, Nebraska. It's a huge lake, and from what you can see, it's also very pretty. 


July 20, 2016 by this day I couldn't wait to arrive to our final destination. My body had enough of being in the car and I was hurting. Even though I was hurting I made sure not to let it on. This was the day we had all been waiting for. We were going to finally arrive in Colorado! It's tradition for my mom and I to take our picture by the "Welcome to Colorful Colorado" sign, and this time we had my nieces. It's also tradition to stop at a restaurant called Lucy's. 
One of things we've tried to teach my nieces is that there is beauty in the little things. On the drive we pointed out the clouds, wild flowers, corn...lots and lots of corn, big blue sky, big solar windmills, sunsets etc. There are many lessons that can be taught, and one of them is how we look at the world. 


July 21, 2016 we finally made it to our final destination and we couldn't be happier. That first view of the mountain range when you're on the highway is breathtaking.  

A beautiful day to drive into the mountains!
Say, "Cheese" in front of Dillon Lake
July 23, 2016 ingenuity is one of the skills that my parents and I have gotten GREAT at. At home my dad built this wood "plank" for me to lay on so we could wash my hair. In Colorado, I laid on the kitchen counter because I couldn't fit in the shower. 

July 27, 2016 I went on a pedal boat with my niece Lizzy while my niece Emily was on a paddle board. I make a huge effort to try to find activities that I can participate in. Despite pain, it's important to find things that give enjoyment. It's also a good distraction from the pain you're experiencing. The pedal boat was something I could do since there was no arm involvement, and it was like riding a bike on water. The only down side was the sun was incredibly hot that day, and I was baking in my halo. 
My nieces and I 
July 30, 2016 My mom and I took my nieces back to look at the spectacular view at Dillon Lake. In the distance there were sail boats. On days like this one, we love nothing more than to enjoy our time outside. We stopped at Subway to pick up sandwiches and ate them by the lake. 
July 31, 2016 My sister was in town so we went to Rifle Falls State Park. I LOVE it there. It is so pretty, and they have a nice trail that isn't too difficult to do. On this trail you get some beautiful views of the waterfalls, as well as the mountains. 
My sister, mom, and I

While on our hike there was this beautiful butterfly that kept landing on me. It stayed on me for a good 5 minutes. 
August 1, 2016 Starting to sound redundant, but yet again it was another beautiful day. We went to the top of Vail Mountain where there are activities for my nieces to do such as: high ropes courses, ride a roller coaster, slide down the mountain on inner tubes, zip lining etc. I had fun watching them do the high ropes course, and I enjoyed walking around. 
Taking the gondola up to the top of the mountain
Picture at the top of the mountain over 10,000 ft. 


August 2, 2016 in 2013, my mom and I were walking on this trail that leads to a golf course. On the walk there is a bridge. Back in 2013, my mom was being goofy and pretended to be a ballerina. Since that day, we have dubbed it, "Ballerina Bridge". My sister's trip wouldn't be complete if she didn't get to experience it. My niece's saw this the year prior. 
This is the closest thing to a ballerina that I'm going to get haha
August 3, 2016 Colorado National Monument. If you've never been, I would highly suggest going. It is just gorgeous there. In 2015 we didn't have time to show my sister so this was a must see. We wanted her to see the mesa and the red rocks. 
Various views from the monument
Just a little spoiled; I had my own personal umbrella holder to keep me in the shade. I was getting so overheated. The weight of the umbrella was too heavy for me, so fortunately my niece did a fantastic job of trying to keep me cool!!!
August 4, 2016 It was an exciting day. I got to meet a fellow "Zebra" aka EDS friend. We had been communicating via email for some time, and we were both going to be in the same area on the same day. We were able to meet in person and grab some lunch. It was a pleasure to finally meet a fellow Ehlers-Danlos friend in person. She too has cervical spine instability like me, and we see the same surgeon. Small world!
Not the sunniest of days but it didn't damper on our parade. 
August 7, 2016 Despite not feeling too swift, it was, and still is important for me to try to get out every day and walk. One of things to know about EDS (Ehlers-Danlos Syndrome) is when the exercise stops, the muscles weaken which leads to further joint issues. I already have enough joint issues so I try to keep the ones that are in relatively good shape, good. Oftentimes this means going out for a walk when it's the last thing I feel like doing. The view where we walked was pretty good motivation!


August 8, 2016 Everyone can use a little pet therapy every now and then. We decided to go to 4 Eagle Ranch. It's a ranch that has a ton of horses, some goats, llamas, chickens, turkeys, and bulls amongst other things. It wasn't crowded at all. We had the place to ourselves. 
Sweet baby horse
Making friends with the goat

Just having some fun
August 10, 2016 There are a lot of pretty things in life. The Continental Divide is one of them. Seeing the snow capped mountains, being cold because you're over 12,000 ft in the air in the middle of summer, and having the wind fly through your hair is always fun. My nieces had never been there before; although, they've heard about it a lot. 
Attractive individuals, right? 
August 11, 2016 Fun at the rodeo!! 

It was REALLY crowded. We were smart enough to get there early so we could sit at the top and I could lean against the fence. This worked out well until I went to stand up and got stuck to fence and popped one of the buttons off of my halo. Fortunately my niece found the button. I have a pretty good track record with getting stuck to things haha

August 14, 2016 it was a quiet day. My nieces flew back to Illinois the day before. I went and sat at one of the tables with an umbrella by the pool, and worked on drawing one of the tigers that I had started. 
Beginning stages of drawing one of my tigers. Unfortunately this is still as far as I am due to my R shoulder/scapula not wanting to cooperate.
 August 15, 2016 final sunset before my mom and I set off on our drive to Minnesota to meet with Dr. E. I love the reflection of the sun on the water. 
August 22, 2016 It was another day of having to get creative. I had to get my hair washed before my appointment with Dr. E the next day. Cleaning hair while in a halo, in a hotel, is a whole new level of difficulty. It was also a funny experience. Ultimately, we ended up dragging two metal end tables, draping them in towels, and getting me on the tables without falling off. It was quite interesting but it ended up working out well. 
Mission accomplished! I have clean hair. 
August 23, 2016 I had an appointment with Dr. E in Minnesota to discuss what we were going to do with my right scapula. As one can imagine, it would be difficult to examine my scapula (shoulder blade) because the halo covers my back. I was able to loosen the vest enough for Dr. E to do an evaluation. It was determined that we would at least stabilize my scapula like we did to my left one in 2015 with an Achilles tendon allograft (cadaver tendon). Before going into all the details of what would be done, Dr. E and I wanted to see how my halo removal appointment was going to go which was set for August 25, 2016. If the appointment went well then we would set me up for scapula surgery. If the appointment did not go well then my shoulder/scapula would have to wait and we would have to see what my neurosurgeon said. In the meantime I asked to have a partial custom brace made to support my arm because I knew my muscles were detached from my scapula yet again, and it was killing me. 
Now this is look! As if the halo didn't attract enough attention, throw on this shoulder brace. Everybody assumes I was in an accident (I don't blame them).
All these smiley pictures that you see are of me trying to live my life as best as I can given the ever changing circumstances that accompanies EDS. They're snap-shots of moments in time during the day. They do not depict what the reality of my daily life looks like. Little do you know I was in physical therapy a few times a week during this time to work on my shoulders/back/hips. There were days I was having trouble walking due to shaking/tremors down my R leg. I was crying every day at some point because the pain was so bad; especially my R scapula. On August 5th I went to breakfast with my mom, nieces, and sister. In the middle of breakfast I broke down crying because of the pain since my scapula moved out of position. I left and had my mom bring me to the emergency room. Those that know me, know that the emergency room is a last resort. 

My hope with this post is that it shows that you can still enjoy moments of your day despite being in a lot of pain, being in various bracing, or being self conscious. Chronic pain is a balancing act. 
Due to the complexity, and being in a halo, nobody wanted to try to manipulate my scapula back into position. Instead they put an IV in, and gave me a ton of muscle relaxants in the hopes that it would un-clench my muscles and my scapula would move relatively back to where it's supposed to be.



My perspective on pain has changed a lot since 2013 when I started writing my other blog, My ImPossible Medical Journey (which I still need to get back to writing). There is one post in particular where I mention that I don't think pain is a good enough reason to not live your life, and participate in the activities life has to offer. That comment was ignorant, and I wish I didn't make it; however, I won't change it because that's how I felt when I was writing about life in 2008. Little did I know (back then) that severe pain can inhibit your ability to do daily tasks, and live your life. My viewpoint on pain has done a complete 180. Unless you've lived with severe, debilitating pain, then this might be a concept that is difficult to grasp. When I made that comment, I had already had 8-10 surgeries, was awaiting more, and trying to figure out other medical issues. I most definitely had pain, but it was absolutely nothing compared to the pain that was to come. 


Please SHARE. Sharing spreads awareness about EDS (Ehlers-Danlos Syndrome) and life in a halo. 
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. 
If you have a Facebook account, you can search and "LIKE" my page, Meg's EDS Medical Journey for current updates.