Friday, April 22, 2016

Halo Application: April 5, 2016

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. 

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!! 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.

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 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!!
If anybody who was, or is in a halo would like to connect, please email me at 

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  1. Hi Megan
    I understand completely how you feel as I have and still do a unknown congenital spinal cord neck issue... After numerous doctors and quacks looking at my neck I finally found the one neurosurgeon who literally saved my life. I never had any trauma or accident to my neck but still ended up in traction then halo neck brace only exemption was that in also was fused from occipital to c4 with bone grafted from my pelvis and numerous rods and screws holding everything together. I literally had to have skull lifted off brain stem so that they can put c1 which was next to c2 it proper alignment and allow spinal cord to straighten out in traction for two weeks of hell and 30 lbs of weight hanging from scalp... Then second surgery was fusion,graft and halo placement.... Only down side I had was that I found that the sheepskin lining and I had a allergic reaction... I had to live with it for 3 months.... If you need tips how to get into tanks and camps while in halo let me know k became a pro at it also learned great way to wash hair in halo but two man job!!!
    Best of luck Amanda
    I'm 3 years post op and now have full function of arms.... I was starting to be paralyzed in both arms b4 surgery

    1. Hello Amanda,
      Thank you so much for reaching out and sharing a little bit of your story. First surgery was halo placement so we had the right amount of traction and then a week later was fusion surgery. I had fusion too only C3-T2 with rods and a lot of screws. He didn't take bone from hip though; he used a bone matrix. I'll be in the halo for 3 months and then I'll be transitioned into a different brace to immobilize my cerviceothoracic spine. I'll have to wear that fulltime for a while but then I'll have to wear it any time I exercise to protect the rest of my spine. My doctor warned me we may have to fuse occiput-C3 in the future because it is likely to become unstable too, so fingers crossed it doesn't come to that. I would love to communicate with you. You can email me at

    2. I have Eds. But not what you've been through. People don't realise the spirits us bendies have that push us up every time we get knocked down or out of place... You're amazing! Really truely amazing! Xx

    3. +Samantha Tucker you're right, people don't realize how we persevere to deal with the various circumstances!! Thanks for your kind words; all I'm doing is just sharing my experiences. That's it :) I'm sorry you have EDS too. Seems you have a good attitude about it.