Wednesday, April 27, 2016

24 Hours After the Halo: April 6, 2016

When I woke up the morning after the halo application on April 6th, I felt like I was almost in a dream. There was ZERO pain in my neck...not to say there wasn't pain in my skull at the pin sites. It was an unbelievable, surreal feeling. For the past few years I had been telling my physical therapists and my doctors all I need is something, or somebody, to hold my head up 24/7 so I could get some pain relief, and function restored to my R shoulder. As crazy as it sounds, I knew exactly what a halo brace was. I had read about them through  my own readings and I remember saying to my family I was willing to let somebody screw a brace into my skull for a short period of time as a test to see if in fact I got relief. To my surprise, the halo brace was recommended to me a couple years down the line and it did just that. It provided relief. Dr. F told me I was the first patient that he has ever had that told him that that they had instant relief in their neck once the halo was applied. That was a pretty good indicator to everybody that there is something wrong and a fusion would be beneficial. Next thing I knew, I was scheduled to have my neck fused one week later on April 12th. 

I'm not saying that I had no pain in my
body, but to have that horrid, sharp, stabbing,
neck pain gone was unbelievable
The video below was taken in Fall 2014. My neck moved more "normal" in this video than it did up until surgery two weeks ago. This video shows how much motion I had in my R shoulder with my neck in a neutral position vs. a flexed position. 


video

I'm not one to take selfies of myself, but that morning I felt a selfie was warranted. I wanted to take a picture of myself smiling because I can't remember the last time I woke up in the morning and thought I looked relatively good considering I just had the halo applied to my head the day prior. I was smiling ear to ear because I had less pain, there were no furrow lines between my eyebrows, and my doctor helped me. What could be better? Even though my gut feeling was that the halo was going to help, there is always that little part of you that worries and asks, "What if this doesn't work? What if I feel worse? What if I put myself through this all for nothing?" The fact that none of those worries occurred was big enough reason all in itself to smile!! 
So happy to be feeling well overall.
When you live with chronic pain all over
your body, it is amazing how much better
you feel by getting rid of just one area of pain.
A little bit later I called my nurse in because I needed to use the restroom. This was going to be the first true test. Would I be able to get out of bed, and walk to the bathroom? I wondered what it would feel like having this big halo on top of my head and having to learn to walk with it. My body would have to adjust to the added weight and find its new center of balance. I had an additional challenge as well because I have such minimal use of my arms. I didn't have the luxury to push myself up with my arms to a standing position. Instead I hooked my feet on the side railings of the bed and used my abs to sit straight up. From there I slowly turned so my feet were on the ground. Instinct for anybody helping you to a standing position is to automatically grab your arms to help you up. Each time I had to say, "No, no, you can't grab my arms. I have to make sure I have my balance. Just stand around me in case I don't have my balance and start to fall." The first time I stood up I was dizzy. I was not expecting that. My mom was on my left, and the nurse was on my right. Both were holding me at my waist until I found my balance. It didn't take very long for the dizziness to go away, and I gave the go ahead to help me walk to the bathroom and I stayed on both feet the whole time! When I walked out of the bathroom, I wanted to see if I was able to stand by myself on both feet unassisted. Guess what?!? I did it and I was thrilled!
Don't underestimate the baby steps
You can't see them in the picture,
but there were people VERY close by to
help me if need be. 
I took those first hard steps, and next thing we knew, I got the okay to start walking short distances in the hallways! YAHOOO!!
This was the next goal on my list. The nurses told me as long as somebody was with me, I was allowed to walk short distances. So my mom and dad came with me. My mom had the camera so she captured this moment of my dad and I. 
My dad and I walking the halls
Just smiling in the hallway. I didn't realize it
at the time I grabbed these pants, but it says
STRENGTH on the outside of my left leg.
After walking the five minutes in the hallway, I was so tired! Your body really has to get get used to this new thing on your head, and the brace weighs an additional 5-7 pounds. When I went back into my room I wanted to lay in my hospital bed and take a nap. Laying in bed wasn't too comfortable for me. Trying to fall asleep in the halo is a huge challenge and it is so hard to get comfortable. One reason it is weird sleeping with the halo on is because your head is suspended in the air and does not touch a pillow. Your head is 100% immobilized meaning you can NOT turn your head in any sort of direction. If you have a problem like I do, where your arms don't move well, it is VERY difficult trying to maneuver pillows behind your head because you can't reach your head. It is also difficult to re-position your body because you can't push yourself off with your arms. Some people can try to sleep on their sides, but if both of your shoulders are bad that is not an option. So while I was in the hospital bed, it looked like I was meditating when really I was sleeping. 


I was sound asleep. It was the most comfortable that I could get.
The plus of the halo, is your head doesn't fall forward when you
fall asleep. The down side is your mouth drops open a little bit :)

Later that afternoon I wanted to try sitting in the hospital chair. For me, I was more comfortable putting a pillow vertically behind my back so there was more cushion. Unfortunately these chairs didn't have high backs so I couldn't sit in them very long. When I was at home though I was able to re-position my pillows differently on the higher back chairs to make myself more comfortable. 

Thumbs up on the left just because it felt like the right thing to do. Picture on the right shows
me able to raise my right shoulder in the air higher than it has gone since 2012 without
any person holding my head up (just the halo). 

Some of you may be wondering how in the world we got that shirt off underneath my halo when it came time to change. My neurosurgeon, Dr. F went searching for a shirt of any kind on the operating room floor so I could put it on before the halo was applied. We didn't care what type of shirt it was. When I got home, and it was time to change, there was no way for me to get the scrub shirt off without my mom cutting it with scissors. In hindsight I should have taken a picture of the cut up blue scrub shirt.  

At my appointment with my geneticist in March a couple of weeks before the halo application and then the fusion surgery, he warned me that people who do not have shoulder problems end up with really bad muscle spasms due to being fixed in a new position. He then said, "Since your shoulders are crap, the likelihood of this happening to you is quite high and you'll experience this worse than the average person." He then went on to tell me that I may require additional bracing for my shoulders, and I will need to be on muscle relaxers to try to tame the beast. He wasn't kidding about that, and was spot on. It has been a daily battle since I got the halo on. 

The next post I will be writing will talk about preparations to make my life easier for surgery. I'll will talk about pin care cleaning, and how the heck I manage to wash my hair and rest of my body while in the halo that can't get wet. That's all an adventure in itself. 

If anybody has Ehlers-Danlos Syndrome, who was, or is in a halo and would like to connect, please email me at kingmeg19@gmail.com 

You can follow me on Instagram at thetravelinghaloofhope

Friday, April 22, 2016

Halo Application: April 5, 2016

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?


To those that don't know, this is what a halo brace is
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 and dislocations.


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.
For several years I have 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; my vertebrae were actually subluxating and dislocating.

Below is video of how I was able to move my neck...


video

Halo Application Day: April 5, 2016 

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 face 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 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 7:30pm 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. 

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 kicked in and the pain was controlled, my parents noticed that there was finally some relief in my face. My dad is the one that spoke to Dr. F and Dr. F told him that I was awake, doing well, and had no pain in my neck. 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.  


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 

You can follow me on Instagram at thetravelinghaloofhope