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. 
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.

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