A Pleasant Surprise

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.


Now that I had been in the halo brace for almost a month, I realized it is different than what I had anticipated it to be. I thought sleeping was going to be horrible in this brace. To my surprise, sleeping was actually better for me than it was before surgery. I know, it sounds crazy because I'm not able to move my head whatsoever in this brace. The thing is, before surgery I slept absolutely terrible. Since the end of 2012 my neck was always flexed forward so my chin was laying flat on my chest. Initially, sleeping with my neck fixed in a neutral position was strange to say the least. Over time though, it has become more "normal". The other thing that wasn't as bad as I thought it was going to be, was the pain in my neck after my fusion. Did I hurt? Absolutely; there is no doubt. As much as I hurt though, it wasn't the same debilitating pain that I had after my scapular surgery the previous year. Since the halo brace supports the weight of my head, and completely immobilizes my neck, my neck muscles could finally chill out for once, and didn't have to be in a constant state of spasm to stabilize my neck. It was, and continues to be a nice break. This surgery, was the fastest that I was ever able to venture out since 2012. It was a pleasant surprise.

https://www.pinterest.com/pin/127297126938899463/ 

May 1, 2016
I wanted to go out to dinner for the first time since surgery. Knowing that I wanted to attempt doing this, I knew I had to lay low, and sleep so I would have enough energy to get through dinner. After previous surgeries, the idea of going out to eat was never on my mind. In hindsight, I think the main reason those previous recoveries were so hard is because there were a lot of issues stemming from my neck that I didn't know about yet. I always attributed my pain and symptoms to my shoulder and scapula injuries. In the late afternoon/early evening my family and I went to a restaurant five minutes from our house. It was nice to get out. 

Out to dinner with my family. Those are my nieces on the left and my mom on the right; not pictured are my dad and sister. When we went out to dinner I knew if I didn't feel well, the worst case scenario was that we would get our dinner to go. I never once felt like I was "stuck" at the restaurant. The good news though, is that I made it through the whole meal.  

When we got home I was completely exhausted. It wasn't too long after I laid down that I fell asleep. It didn't take too long for Daisy to fall asleep either. 

May 2-3, 2016
I will admit, going out to dinner took A LOT out of me. Unfortunately, a lot of times after surgery, you ended up paying for whatever activity you choose to do the day after. Surprisingly, it wasn't my neck that was giving me the most trouble. It was my left scapula. Ever since surgery on April 12th, my left scapula has continued to give me issues. The pain I was experiencing was consistent with a tear of one of my scapular muscles again. My guess was my upper trap because that muscle had to be detached during the fusion and was then reattached. Sadly, I've had this particular injury way too many times, and I know exactly what it feels like. I was anxiously awaiting my appointment with Dr. E in Minnesota on May 13th to basically confirm what I was feeling. 

May 4, 2016
When I was put in the halo, and shortly thereafter had the neck fusion, one thing I never really gave any consideration to, is that I wouldn't be able to do my "trick" to do my hair anymore. Since 2006, I had been bending my neck forward every single time I wanted to get my hair up, get my hair brushed, wash my hair, get an itch on the top of my head etc. because I couldn't reach my head due to my shoulder and shoulder blade injuries. Now that my head is fixed in an upright position, I have to rely on somebody else to do my hair for me. Even as I type this, once the halo eventually comes off, I'm going to have to figure out a way to do these tasks since I won't be able to bend the same way anymore. It'll be another learn as you go situation.  

Fortunately for me, I have a sister who is pretty good at doing hair. She washes my hair for me, and on May 4th I asked her if it was possible to get my hair in a braid (of course I had good timing, and asked her this AFTER she just dried my hair instead of before). She said she would give it a whirl. This is the day she officially earned her title as, "The Halo Hairstylist". Just about every single time she washes my hair now, she puts my hair in two braids because it's easier for me to deal with, and it doesn't get dirty as fast. 

Attempt number one of trying to braid my hair in a halo

Sisters

May 5, 2016
It was nice out this day. I was primarily writing outside and enjoying the fresh air.

This was the finished product of my sister braiding my hair while it was dry. Not too bad for a first time braid attempt in a halo. It didn't even get too messy while I was sleeping.  

The crab apples in our tree were in bloom which made our backyard smell really good.

May 8, 2016
It was Mother's Day here in the United States. My family and I wanted to do something fun for my mom, but our options were limited because I didn't have the stamina to be out for the entire day. I suggested to my sister that we should all go for pedicures since it would be something I would be able to tolerate, and it's something our mom would enjoy. What's not to like? 

Getting the pedicure felt so good. They massaged our calves and feet too. My calf muscles were so sore from the additional weight from the halo. Every day for almost the past month felt like a work out whenever I went for a walk. To any halo people out there, getting a pedicure is definitely something you should get done. 

A picture of all of our freshly painted toes. 

All the girls in the family; my nieces, my sister, me, and my mom. We went in front of our house to get our picture taken by the tree. The tree is really pretty in the Spring. It grows hot pink flowers all over it. 

Picture of my sister and I with my parents. 

May 11, 2016
It was the day my nieces had been anticipating...decorating my halo. I had stopped at the store earlier in the day with my mom to pick up some little jewels that just stick on. I also picked up some sequenced letters so we could put a word on the front of the halo. 

I felt completely ridiculous but was being a good sport. My sister and my nieces thought it would be funny to put the word, "Ouch" on the front of my halo. One of the workers at a store we go to suggested I put the word, "Help". Sometimes you have to be able to laugh at yourself and make the most out of your situation. 

The finished product. My nieces were very proud of their decorating skills. 

May 12, 2016
It was finally the day my mom and I would drive up to Minnesota to meet with my doctor. The car ride felt exceptionally long. It was nice having my head and neck stable in the brace, but it was really difficult sitting in the car upright for that duration of time. I could only lean the seat back so far because when you're in a halo, your head is suspended and doesn't touch the back of the seat, or even a pillow for that matter. To make things a bit more comfortable, I roll a small blanket that I have and put it behind my neck so It rests on that.   

Here is a picture of what it looks like when I lay on my back. Your head is literally suspended when you're in a halo. I had this picture taken last week. There is no way I would have considered laying flat on my back, on the floor like this almost a month out from surgery. 

This was the first view of my new "battle wound". It extends down further than what you can see here. The steri-strips were on for just about 4 weeks. They stayed on longer than normal because I can't take a regular shower so that area doesn't get too wet. The redness is just a reaction I get from adhesives. It eventually went away.  

When I saw the above picture of my incision, I had a flood of emotions. The first thing I said out loud to my mom was, "I'm going to look ridiculous with all of these incisions next to each other on my back". She smiled and said, "No you won't" followed by, "You earned them". At the same time I was picturing what my upper back will look like, I also felt a huge sigh of relief because there was validation. Every single symptom that I had complained about that seemed really odd and out there, made perfect sense. It's my proof that something was very wrong, and it wasn't a problem that was going to be cured by seeing a psychiatrist. Unfortunately what I went through in the quest for a neck diagnosis happens ALL OF THE TIME! It's sad and really unfortunate because there are so many people like me, who are just looking for a diagnosis and treatment plan so we can move on with life. Many of us get bounced from doctor to doctor for years, and get told ridiculous things like, "It's all in your head"..."You're drug seeking"..."You're attention seeking"..."There's nothing wrong with you"..."You just have to deal with it". Quite frankly, if any of us did end up seeking care from a psychiatrist, it would be because those doctors that made those ridiculous & hurtful comments caused self doubt. It's mental torment, and is so hard to continue pushing forward and take those comments and wipe them off your shoulder like they never existed. To those that keep being told, "There's nothing wrong with you!" keep plugging along, and sooner or later you'll hopefully end up in the hands of a doctor who will take care of you. I am proof (along with many other people) that you can be told, "There's nothing wrong!" when there's a big problem the entire time. 

http://quotesgram.com/listen-to-your-body-quotes/ 

The next post will be about my time in Minnesota when I had my appointment with Dr. E to find out what is going on with my left scapula. 
Feel free to contact me at kingmeg19@gmail.com     

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Halo Application: April 5, 2016

About this blog:
My hope is most of you reading this blog have no idea what a halo brace is, or what a halo application is. Sadly, my guess is most of you have some idea of what it is because you're looking for more information because a.) you are wearing one, or found out you will be or b.) somebody you know is going to be put in one. For me, I was the person who was going to be put in a halo brace. When I found this out the first thing I did when I got home was start researching to learn more about it, and things I needed to do to make my life in the halo easier. I was fortunate enough to have been in touch with a girl around my age who was in a halo for nearly 8 months! She was, and has been a great person for me to correspond with to get as much advice as I could. I personally like to communicate or read about people's stories in a halo because who better to learn or get advice from than someone who has actually lived through it?

This is one style of a halo brace. At this time I didn't know which one I was getting. To those want more info on a halo brace, you can follow this link: What's a Halo

Now a brief little background information about about my neck. My neck moves in ways that aren't supposed to be possible. I've been told by doctors that the area where motion is occurring when I hyperflex (bring chin towards chest) my neck, is where you would expect to see motion in a person that was hung from a tree. I've been told if a normal person moved their neck the way I do they would be dead. So why can I move this way? I'm not normal. I have a connective tissue disorder called Ehlers-Danlos Syndrome. A very brief description of EDS is that your body lacks the protein collagen which makes your tendons, ligaments, muscles etc. very weak and not strong enough to support your joints. This leads to multiple joint subluxations, dislocations an an array of other issues.

It is hard to tell in this image, but the back of my neck to to the
top of my upper back lays completely flat on the bed. This was
a VERY comfortable position for me.

This was the other side view. Again, this was a comfortable position.

For several years I had been saying I am having a lot of pain in my neck. This neck pain escalated in 2012 after a R shoulder dislocation. In 2013 my physical therapists moved my neck and it reacted in a very abnormal way. My therapist said there is something very wrong with my neck. January 2014 was the very first doctor I saw for my neck. From January 2014-December 2015 I saw 10 different doctors for my neck (4 neurologists, 3 neck orthopedics, 1 neck pain management, 2 neurosurgeons). It wasn't until I saw doctor number 10 (Dr. F) that someone LISTENED, was willing to think outside the box, and was going to get involved in my care to help me. Up until I saw Dr. F some of the things the other doctors told me were 1.) You should not be able to move like that but I don't know why you can 2.) This problem is psychosomatic and you need psychiatric help 3.) There's nothing wrong with you 4.) You've tricked your brain to think you can only function with it in that position. Words will never express how thankful I am for Dr. F. He is the one who VALIDATED EVERYTHING that I had been saying and experiencing for years.

On March 11, 2016 I found out I was going to need to have a halo brace screwed into my skull. My doctor had gotten the results of the movement fluoroscopy test that was done at the end of February and the imaging revealed that my neck was majorly unstable. At that point I was told I was unstable from either C5 or C4 (both were mentioned) all the way to T2. Dr. F told me he had been bringing my images to his various conferences to see if anybody has ever seen anything like this before. The general consensus was that nobody has. He said the room was filled with a lot of, "Oohs, and Ahhs". Once again I was told I'm an enigma. The only thing that was left to decide was what order do we address everything because there are still problems with my shoulders that needed attention. After getting in touch with my doctors and all of my medical people it was decided that it was most important that my neck get addressed first. My neurosurgeon Dr. F told me that if I were to fall, or be in any sort of accident, I could end up paralyzed or worse because my vertebrae would move way to much because my ligaments are too weak to support them; the facet joints on my vertebrae were actually subluxating and dislocating at multiple levels.

Below are two videos of how I was able to move my neck. In hindsight we now know why I was able to move like I could in these videos. The first shows hyperflexion, which is bring my neck forward towards my chest. The second video shows me bringing my neck into extension (backwards), and then having to hyperflex (bring forward), to then bring my neck back into a normal position. This video was taken before I knew what was wrong with my neck. To this day I think it's crazy that none of the doctors, except 2, thought moving like this wasn't an issue. The one orthopedic neck surgeon I saw said I needed to see strictly a neuorsurgeon. Several months later I was referred to my neurosurgeon, Dr. F. 

Video Number 1 on Youtube:
Extreme Neck Hyperflexion 9/22/15

Video Number 2 on Youtube:
Extreme Neck Hyperextension & Hyperflexion 1/4/16

April 5, 2016: Halo Application Day...Yikes!! 

BEEP...BEEP...BEEP...my alarm went off at 4:00 a.m to wake me up so I could be out the door at 4:30 and check into the hospital at 6. My alarm didn't wake me up that morning. I had already been awake since 2:30 because my nerves were getting the best of me. It was hard lying there in my bed knowing that in a matter of hours a new chapter of this medical journey was soon to begin. My neck was finally going to be addressed. For the past three years no neck doctor knew what to make of the situation and didn't want to get involved. I was bounced around from doctor to doctor with nobody willing to take the time to investigate things. Now the moment was finally here to take action. That moment was paralyzing with both apprehension and relief that things would finally be addressed. I was terrified. Most people who are put in a halo brace find themselves in that situation after some sort of severe trauma. My situation was different. I had no severe trauma to my neck; I have EDS. I had multiple days to think about a halo brace being screwed into my skull. I literally emailed to my doctor, "Deep down I know I have to move forward with this which doesn't thrill me. I think I'm just scared to pick a date because the time has finally come to actually take some action and address it." I was willingly signing up for an extreme diagnostic measure to ensure that a fusion would help. 

https://www.pinterest.com/pin/84161086762720125/

My dad wrapping his arm around me since he wouldn't be able
to do it too easy once the halo is on. 

My mom chose to kiss me directly on my head because it wouldn't really be possible with the halo on. 

Next thing I knew it was time to be wheeled back to the operating room for my 25th surgery. I was enjoying my final moments being able to move my head and not be stuck in a fixed position. When I got into the operating room it was 7:30 am. The nurses had me move over to the operating table. It all happened so fast and practically all at one time. I had one nurse apply a blood pressure cuff to my left arm, another nurse applied calf compression sleeves to massage my calves to prevent blood clots, another nurse was putting oxygen in my nose, one of the other nurses applied warm blankets to me and strapped me to the table with a belt to ensure that I wouldn't fall off...how nice of them. The next thing I knew it was 7:35 and Dr. F was sitting at a table to my left. There was calm commotion going on. I could see eyes looking at one another and I knew something wasn't quite right. I could hear Dr. F on the phone with somebody telling them he has a patient on the operating table right now and we need the halo vest. Next thing I knew, one of the nurses came over to tell me that my surgery had to be delayed because the supply company didn't show up that morning so they didn't have the vest portion of my halo. So I moved back off the operating table to the other bed and was wheeled back to pre-op. Talk about mental torment. The anxiety building up knowing you're about to have the halo applied and then you find out you have to wait a few more hours. 

You should have seen the look on my mom and dad's faces when they were brought back by me and I wasn't in the halo brace. Apparently nobody told them about the surgery delay and they walked into the picture below. I was all dressed again, and the staff told me I could drink clear liquids until 10:00am because surgery would be done in the afternoon.

Enjoying my Sprite and ice chips. Dr. F had stopped by me, and told me to enjoy my extra few hours being halo free

From this point my parents and I were moved to my room. Originally surgery was supposed to be around 3 or 4. Then we were told it could be done at 5, 6, or 7. This made for a very, very long afternoon. In the meantime, the supply company delivered my halo/vest brace to my room. So for the next several hours I had a stare down with it. It was surreal staring at this brace knowing that it was soon going to be secured to my head. There are no words to describe what that is truly like. 

My soon to be new best friend

I wonder how many people actually get to take a picture with their halo brace before it is actually put on their head.

Finally 7:30 p.m rolled around and I was wheeled back to the pre-op area. Dr. F was my waiting by my waiting room and was very proud that he was going to be my official pre-op nurse. He took great pride in tying the back of my gown in a nice a little bow. I'm telling you, this neurosurgeon has mad skills haha. Dr. F and the anesthesiologist then said it was time for me to give my parents a hug and tell them that I love them because it was time to go back to the operating room. 

I'm not going to lie, the halo application was rather unpleasant. I was positioned on the OR table. I was not give general anesthesia and I very much remember the halo being applied. The anesthesiologist did give me a lot of medicine to help me relax which did help. I remember Dr. F saying at one point, "Megan, you're not allowed to go to sleep. You have to stay awake." The worst part of the application is the screws being put into your skull. Two were installed on the front of my forehead, and two were installed on the side of my head above my ears. They have two doctors that do this. They numb the area up but it doesn't eliminate the pain completely. When the screws are screwed in there is a lot of pressure and you can hear a crunchy noise as it moves through your skull. I remember lying there quietly with tears running down my face. I had a nurse on my left that was holding my hand telling me that I was doing a good job, and it was almost done. I also had either a doctor or a nurse on my left side rubbing my arm trying to comfort me. Next thing I knew, Dr. F sat me up so he could get my neck in the most optimal position to make sure my bones were aligned properly. He asked how I felt, and I told him for the first time in years I have NO PAIN in my neck!!! Needless to say, Dr. F was thrilled. My dad is the one who spoke to Dr. F after the halo was applied. Dr. F told him that I was awake, doing well, and had no pain in my neck.

By the time I got back to room the post-operative nausea was kicking in and I wasn't feeling too swift. Fortunately the nurses were on top of things and got me anti-nausea medication which helped drastically. 

Once the nausea meds kicked in, and the pain was controlled, my parents noticed that there was finally some relief in my face. My mom knew this was true when she saw me because for the first time in several years, my face was relaxed and peaceful. There were no furrow lines....hooray!! 

So happy to have no pain in my neck!!

https://www.pinterest.com/pin/471400285967932221/

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/

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.