Monday, May 9, 2016

Cervical Spine Fusion Surgery

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.

April 12, 2016: Surgery Day

Where do I begin with writing this post? Unlike previous posts, this one isn't as lighthearted. I guess you would say it's a bit more emotional and I'm letting my guard down.This is the post where I finally discuss what was done during surgery. This is the post where I show a side-by-side X-ray taken from November 2014 compared to an X-ray taken in February 2016. This is the post that shows the video of the neurological difficulties that I had in July 2015 down my right side when I would walk. At the end of the day, this post is a part of my reality. Surgery. Lots and lots of surgery. Lots of battles being fought long and hard with doctors trying to convince them that there is a serious problem because many doctors think people with Ehlers-Danlos Syndrome (EDS) are "just flexible" when in fact it is so much more than that. So no matter how many smiley pictures you see, there is still a lot of stuff going on behind those smile. 
Waiting in pre-op before being wheeled back to surgery.
Some of the things we were hoping surgery was going to help with, besides stabilizing my neck, was helping restore function to my R shoulder and help some of the neurological symptoms in my R leg. These symptoms are displayed in the video below from July 2015 at physical therapy. 
I uploaded the video to Youtube. Just click on Neurological Deficits with Neck Instability to see: Neurological Deficits with Neck Instability

Based on the picture of me here smiling, you would have no idea
about the true situation that was happening. On the outside I look happy but on the inside I was freaking out.
The morning of surgery felt somewhat surreal. I woke up feeling like it was just any other ordinary day, even though I knew I was going to have a lot of brand new hardware put in my neck in just a matter of hours. It was as if I was in dream. I painted my toenails pink before leaving that morning (pre-surgery tradition) and I wasn't really nervous. The nurse called me the day before surgery telling me to check in at the hospital at 2:00 p.m. Then she called a few hours later telling me to arrive at noon. Then on the day of surgery while my parents were driving me to the hospital, the nurse called about 9:30 a.m asking if I could be there at 10:00 a.m. There was no way that would happen because the hospital isn't close to where I live. She said it was no problem and to just get there when I can. I immediately started thinking to myself, "Why has my case been moved up so many times?" I ended up checking in at the hospital at noon.

Below is a X-ray of my neck from November 2014 compared to February 2016. Notice in the x-ray from 2014 there is a curve at the back of my neck, while the one in 2016 everything just drops forward. When I told the doctors in the Fall of 2015 my neck moves in ways now that I couldn't before in 2014, they just blew me off...I beg to differ.  
Nov. 2014. Notice there's a curve at the back of my neck.
My neck still moves more than it should

in this x-ray but you can count 7 vertebrae. 

Feb. 2016. Notice there's no curve at the back of my neck and everything drops forward. You can only count 5 vertebrae. This x-ray shows my facet joints subluxating and dislocating starting at C3.

We made it to the hospital right about noon. This was it. The time had finally come. I was all checked in. Identification and allergy bands were attached to my wrist and I was all gowned up ready to go. There were a lot of thoughts running through my head since it took years to get a doctor that would take my neck problem seriously. 
Enjoying my final moments without pain in my neck because
I knew when I woke up it was going to be a different story.

Got to love that EDS lovely connective tissue of mine. A vein blew trying to get an IV started. This always happens. 
Before going into surgery, my neurosurgeon, Dr. F, stopped by to talk with my parents and I. He said yesterday (April 11th) he and the rest of the doctors had been reviewing my imaging and discussing my case. Instead of fusing C4 or C5-T2 they will have to fuse C3-T2. He said they took more measurements of things and I was subluxating C3-C4, C4-C5, dislocating C5-C6, C6-C7, C7-T1, and subluxating T1-T2. 

This is the same x-ray image as above. So this is a still image of the video that was taken of my neck. The circled areas are the facet joints. Those are the joints that were severely unstable. 

Picture of facet joints.
Dr. F said it was quite incredible that I hadn't damaged my spinal cord. Having this cervical spinal fusion wasn't a choice. It was a necessity. I was walking around like a ticking time-bomb. God forbid I fell, or was in an accident of any sort, I would become paralyzed or worse because my ligaments were far too weak to stabilize my neck; my vertebrae would move too far and hit my spinal cord. Those are scary words to hear. Sadly, a lot of people in the EDS communities hear those words. I can't begin to tell you how fortunate/blessed/lucky (pick your adjective) I feel that nothing more serious happened to me over the past couple of years with all of the traveling for doctor appointments/physical therapy, and easy walking trails I've done. At that, my mom asked Dr. F about how long surgery would be. He said, "At least 4 hours."

This photo is from April 4, 2015. I was still recovering from
left scapular surgery. I find it ironic that the area I put a
rectangle around says, "Area that we need to immobilize" is the entire area where I was unstable.
As I always say,
I don't know how long I was expecting surgery to be, but I know it wasn't 4 hours. This was my look of shock when I heard how long at minimum surgery would take, and this was my look processing the new news of what Dr. F had just told me about my neck.
Shortly thereafter, my pre-op room was filled with nurses, and the anesthesiologist. The time had officially come to be wheeled to the operating room. I gave my parents as good a hug as you can in a halo brace, and I was wheeled off. The last thing I remember once in the OR was chuckling about how they were going to have a party because there was music playing. The anesthesiologist then gave me versed medication in my IV which blocks your memory and that was it. 
Operating room was directly to my left. I was so nervous.

The anesthesia was starting to wear off and I was becoming a little aware of my surroundings, but my eyes were still shut. The pain in my neck was unbearable. I heard a nurse to my right say, "She was on her stomach for 6 hours." I could hear the nurses walk over by me. I'm saying out loud my neck hurts. My eyes were still shut but the nurses are looking at the sores on my knees and hips from being on my stomach for so long (I knew they were looking at the sores because they were talking about them). Next thing I remember is having both of my parents on my left side. I heard one of them say I was in the ICU. I should have known by all of the alarms and beeping machines going off. I was crying. Sharp, stabbing, throbbing pain was radiating through my neck. I was asking for pain medication but something got lost in translation because there were no orders for any pain medication. The nurses' hands were tied; they couldn't give me anything. They couldn't even give a single over the counter Tylenol...not that it would have done any good. All I kept thinking to myself was, "I just had my neck cut open to have rods and screws drilled into my bones and nobody ordered any pain medication? How is this possible?" My mom was holding my hand. I kept telling her to let go because I needed to squeeze something and I didn't want to hurt her hands. I told her to let me hold dad's hand instead. I squeezed with all my might. I kept saying I can't do this with tears rolling down my cheeks. My blood pressure was high. My heart rate was high. The one nurse tried to distract me by telling me she liked the pink nail polish on my toes. I completely ignored her and said, "Dammit my neck. My neck!" The only thing the nurses could say was, "We know honey. We're waiting for the orders to give you pain medication." To which I repeated, "Dammit. My neck. My neck hurts so bad!" as I squeezed my dad's hand as hard as I possibly could. 
Wet eyes and cheeks due to so much pain. It was horrible. 
Eventually the orders for the pain medication came in, and the nurses started to administer pain medication into my IV to try to get some control over my pain. The nurses were playing catch up. You can think of it like being behind in a soccer game when you're down 4-1. Everyone is working as hard as they can to score those goals to get closer to at least tying the game up. That's what this was. We were trying to get my pain to a point where it was at least somewhat tolerable, and so far we were far behind. The pain was so intense. I've had a lot of surgery, but I've never woken to zero meds on hand. This was a first for me. Fortunately the nurses eventually were catching up, and my pain was getting somewhat under control. I didn't need to squeeze my dad's hand like one would when they were giving childbirth. To this day, my dad still says his hand was sore for a good two days from me squeezing so hard. I guess it was a good indicator that my nerves were intact in my left hand. That night was filled with much activity. One would think at this point I'd be able to rest for the night because it was late in the evening. Wrong. The doctors wanted a CT scan done to make sure all of the hardware was in the correct position. I wish they would have done this when I was still knocked out. The pain was so bad going over bumps to the CT room. Once I was in the CT room, four medical staff people had to pull me over on my sheet onto the CT table. It hurt so bad and the rest of the evening was a game of catch up. It's not a fun game to play.

Finally my pain was becoming "tolerable". I still hurt like no other but I didn't feel the need to squeeze anybody's hand off...I'm sure my dad was thankful for that!
You can tell from this picture my pain is under control, right? This was a huge improvement. I gave the "thumbs up" sign indicating
that I'm fine. As my parents would say, "You're a lot of
things but fine isn't one of them." 

The next few posts will be about the days that followed this surgery. I didn't want to write it all in one post because it would become a novel. The coming days were certainly hard ones indeed. You'll get to see pictures of what my brand new stable neck looks like too. 

If there is anybody out there that has Ehlers-Danlos Syndrome (EDS), is in a halo, or was in a halo and would like to connect, please free to email me at 

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1 comment:

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