Monday, May 30, 2016

Discharged Home After Cervical Spine Fusion

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.

One of the hardest things after any surgery is getting up out of bed and walking the halls. For me, there is a constant internal battle because half of my mind is saying, "I don't want to get up and walk because it hurts, and I'm tired," while the other half of my brain is trying to motivate myself by saying, "Get up and walk so you can get strong enough to go home."  With Ehlers-Danlos Syndrome the more you don't move, the weaker all of your joints will get because your muscles will weaken. In EDS, strong muscles are key to keeping joints more stable. 
To walk or not to walk???

View from my new room of the Museum of Science & Industry. I would much rather be strong enough  to be outside, versus being in the hospital.
April 16, 2016 Post-Op Day 4:

It was a more "exciting" day because my sister stopped by to visit me. I was so happy to see her because she was able to get my hair up for me since I can't reach the top, or behind my head. My hair had been driving me nuts because it was getting caught in my halo. Fortunately she solved the problem. One might not realize how ridiculously hard it is to get your hair brushed while in the halo. It's even more difficult to get it into a ponytail because you have to slide the front hair under the bar that goes over the top of your head in addition to behind/above the screws over your ears. It involves much more than you'd ever realize. It's really time consuming initially because you're learning how to even do the task. My sister was officially dubbed the, "Halo Hairstylist". A few days before I had my halo application I went and had my hair cut shorter because I thought it would be easier in the halo. For me, I think having my hair shorter made it harder to get it up in a ponytail.
I have absolutely no idea what we were doing except being weird and she got me to smile. 
A+ for her getting my hair up and off of my face and neck!
Once my hair was up, I learned my incision was longer than I initially had anticipated. When my hair was down in the previous post, I didn't realize how high the incision went. Surprise!
Later that day, I went for a walk with the walker that had arm supports with my parents, and my sister. My sister was in charge of the camera because both of my parents were helping me move the walker. Bad shoulders/scapulas and walkers are not a good combination. I was getting ticked off at it since my shoulders suck, and I felt like a dog on a leash with my parents "pulling" me along.
This was me telling my parents how this walker is stupid, and if somebody would find me a brace to support my left shoulder I would be able to walk without any assistance. When you're in a lot of pain you don't necessarily have the most patience. Little things upset you easier (at least they do for me), and there's a lot to cope with after surgery both physically and mentally. 
A quick "smile at the camera" as my parents and I were trying to walk all the way around the nurses station. You can tell just how thrilled my parents and I were.  
Based off of the pictures that I have on my phone, nothing too eventful happened on this day. I know I kept asking for a brace of any sorts that I could use to immobilize my left arm. The answer was no. I then had the idea if maybe the physical or occupational therapists could tape my arm up like my physical therapist in Colorado did to help hold it up. I went as far as getting the picture to show them but apparently they didn't know how to tape it. I remember saying I could instruct them on how to tape me but at that point it was pointless. Adhesive tapes do not agree with my skin at all, but at this point I knew it would have been the lesser of the two evils. I would have done anything to have a little scapula relief. 
This picture is from Feb. 2013. If my arm would have been taped like this, it would have helped to get the drag of my arm off of my neck. This tape was more for my shoulder joint, but it would have helped my scapula too. 
April 17, 2016 Post-Op Day 5:

I was on a mission this day. What's the mission you might ask? To get my left my arm in a sling because I was officially fed up that I was in a hospital, and nobody had any idea of what to do to immobilize it. The pain over my left scapula was increasing, and it was making me more cranky than I already was. Between the neck pain, and the scapula pain I wasn't the most pleasant individual to be around; however, with every other obstacle that has ever been put in my path, I think, and figure out a solution to get around it. This was no different, and this is how it all played out. The nurse, as well as the physical and occupational therapists had left my room officially saying there wasn't anything they could do. I could understand the nurse not having too many ideas since it's not their area of training, but I was not pleased at all with the physical or occupational therapists. If they weren't going to think of a solution then I guess I would have to figure it out myself.

My mom and sister were with me. I remember standing up, and saying, "That's it! We're going to be 'old time mountain women' and go back to the old days and make a sling". I had my mom, and sister take the sheet off of my bed because that's what we were going to use to make a sling to immobilize my arm. I knew we could make something that would go around my torso that would not put any pressure on the halo, and it would not put any pressure on my neck. It honestly took maybe 5 minutes to make a sling. The problem was solved. It wasn't rocket science. This was the final product and it worked like a charm!
Wala! Ladies & gentleman we made a sling out of a bed sheet! It helped alleviate some of the scapular pain, as well as the added pain in my neck from my arm pulling on it. So if anybody has this problem in the hospital, make a sling out of a bed sheet. 
Walking unassisted! You should have seen the look on the nurses faces when they saw me out of my room without a walker, and with my arm in a sling made from a bed sheet. It was priceless!
Very fitting words that were right outside my hospital room. I did one lap around the nurses station and noticed these words when I got back to my room.
"Put one foot in front of the other!"
When you're post-op, one lap around the nurses station is exhausting.
Later that day, Dr. F had stopped by again to see how I was doing. He saw my sling concoction, and said he was going to send somebody up from a brace place with a brace that might help me. At around 8 p.m. a man came in saying he has a brace for my shoulders. He showed me the brace and I immediately told him, "Thank you for coming but that brace is not going to work". The man brought what you would call a "Figure 8" brace. It gets put on both of your shoulders, and pulls your shoulder blades together. This was not my issue. I needed a brace to hold my shoulders up. The man said I'll need to have something custom-made to solve my problem and he will have somebody call me tomorrow. The next day the office that makes the custom braces called and we scheduled an appointment for a few days later. The custom.braces they made ended up working incredibly well.

April 18, 2016 Post-Op Day 6 aka Discharged Home Day!

You may or may not notice I am in the exact same clothes that I was in the day before. I am one of those people who notices details. After surgery it takes a lot of energy to get changed, and do simple tasks. If it's not necessary to use that "energy storage" then don't. Save your energy to do something more productive, like walk. Also, in my situation, if I were to change, that would mean I would have to take off the "sheet sling". My arm was in a relatively comfortable position. When you find those comfortable positions, you don't mess around. You take advantage of them for as long as you possibly can!

The day before, I told my parents, and Dr. F I wanted to go home the following day (April 18th). I was so tired because nurses are always coming in at all hours of the day, and night to check vitals, and I was hurting. My shoulder/scapular surgeries were postponed due to the severity of my neck, and I knew I would be more comfortable at home. At this point I was on all oral medications so there really wasn't a need to be in the hospital. Dr. F told me there was absolutely no rush, and I was allowed to stay longer if I wanted to. I wanted my recliner, and I wanted my dog Daisy. She helps keep me calm, and petting her is soothing; essentially, it's pet therapy.

My parents and I were hoping that I would be discharged in the morning since we were in Chicago, and we wanted to avoid rush hour traffic. It wasn't the end of the world, but I didn't get discharged until around 5:30-6:00 p.m. To those that aren't familiar with Chicago, that is rush hour hell with bumper to bumper traffic. Since we were at the hospital pretty much all day, it turned into a busy one. 

Before being discharged, I had to pass the protocol from the physical therapists perspective. She came by in the afternoon. This was a new physical therapist and she was a hoot. She came by to make sure I could walk okay, and had me do stairs because we have stairs in our house. She was very nice. I liked her a lot. I passed my walking, and stairs test with flying colors. She was impressed that I was able to walk so easily with the halo. She told me most people are pretty wobbly, and have trouble finding their center of balance. I told her I've had a lot of surgery, and I've been in a lot of various braces that have had me lopsided. Being lopsided forced me to get good balance; in that respect, all those previous surgeries prepared me for the halo. I didn't have a hard time learning how to walk or do stairs at all. To anyone that may be having to face neck surgery, I would suggest getting your body in as best of shape possible. When you go into surgery strong, you typically have an easier recovery; that doesn't mean it won't be hard.
She was funny; she couldn't get over my height
Going up the stairs
Coming down the stairs
The nurse I had was wonderful. He had been my nurse for the past two days. He was constantly making sure I was okay, and that I didn't need anything. When it was time to take my oral pain medication, he was there before I had time to hit the "call nurse button". He is a very good nurse. In fact, all of my nurses were very good. I have no complaints at all. Make sure you tell your nurses please and thank you when they help you. They appreciate it more than you realize. 
My nurse and I. 

Later in the day, Dr. F stopped by with one of his associates. Once again, he told me that I could stay longer, and that he liked coming to visit me. I chuckled but told Dr. F I would be more comfortable at home, and would be seeing him soon for post-op visits. While in my room he decided to take off the dressing that was applied over my incision. It was at this time when I got a better idea of what my incision looked like. Those white pieces you see that look like tape are called steri-strips. They help the incision heal, and will fall off on their own.
Another "battle wound". To be completely honest, I'm kind of nervous for my halo vest to come off because I already have larger incisions over my shoulder blades. There are incisions over the backs of my shoulders, one in the middle of my back and now I get to add this one to the collection. I've been telling people,  it's going to look like I was bit by two sharks instead of just one.

While Dr. F was in my room he asked if I had any questions. Anybody that knows me knows I always have questions. I was sitting on the side of the bed, and Dr. F was sitting on the couch across from me. A few of the questions were:

Question #1: What comes after the halo?

Answer: You'll be put in a vested brace to immobilize your cervical and thoracic spine that you'll wear for X amount of time. (Little did I know I would be in the halo for a total of 8 months before these other braces came my way). You'll also get a neck collar that you will wear to shower in. Eventually you'll only need to wear the vested brace to protect the rest of your spine. It's possible that we may need to fuse you skull-C3 in the future because it's not uncommon that the area above a fusion becomes unstable. (Little did I know that I would be having my skull-C3 fused just 4 months later). 

Question #2: What happens if you fuse me skull-C3 since I'm now fused C3-T2?
Answer: You'll have no mobility in your neck.

Question #3: What restrictions will I have now that I'm fused?
Answer: No heading a soccer ball (made us laugh because of all the headers I did in my soccer playing days). You'll need to wear the vested brace whenever you exercise to protect your spine.

Question #4: Why didn't any of the other doctors recognize this problem? How did it go from being told 9 months ago by a different doctor that I needed psychiatric care, and here we are today with a halo brace, 2 rods, 2 plates, and 14 screws holding my neck together?
Answer: There wasn't really one. Dr. F's lips tightened together and he just shrugged not saying a word. He looked me in the eyes and said, "I wish it was a psychiatric problem because it would have been a whole lot easier to deal with that than what I just did to you. The good thing now is that your head isn't going to fall off because it was only a matter of time before it did." To this day those words play through my head. It had a whole new meaning when my skull-C2 slid into my throat on August 25, 2016.
Final Question: Can I please take a picture with you because I get my picture taken with every doctor that has helped me? I think he was little shocked by this question but said, "Yes, here you can sit next to me on the couch." My mom went to take our picture but with the sun at our backs, you couldn't see our faces. So we had to stand instead, and he said, you're going to be taller than me if we stand. I told him I'll slouch down a little then. 
Dr. F & I
The time had finally come where I got to go home. At first we had no idea how I was going to get home. I wanted to sit in the back seat because that's where I usually go after surgery. We weren't even off the hospital campus before pulling over because the bumps were so bad causing a ton of pain in my head and neck. I was crying so much. I felt like I was going to puke. My body temperature kept alternating from hot to cold. It was horrible. The potholes were adding insult to injury. My dad ended up pulling the car over. I moved to the front seat and my parents propped pillows all around my head to take some of the brunt from the bumps. I cried pretty much the entire way home. I didn't really sleep. It was not fun. We were all thankful when we made it home over 2.5 hours later.   
Thumbs up! Home at last!
I went upstairs and propped up in my recliner. Shortly thereafter, I fell asleep and Daisy wasn't too far from falling asleep herself.

There have been a lot of times where I've been told, "I don't know how you do it" or times when I've been asked, "How do you keep going?" Honestly, I feel like I have no choice but to keep going. There has to be a light at the end of the tunnel, right? Is it easy? No! It is the hardest thing I've ever done. I crave the day where my body is exhausted from being at work all day vs. dealing with medical stuff. There are days where I cry, and say, "I can't do this anymore". There are days where I keep saying, "I miss my old in-shape, athletic soccer body." There are days where I ask, "How is it possible that in matter of 10 years I went from being so athletic to having enough surgeries to match my age?" I also ask myself, "Why did this happen to me?" I will say, I don't know why this happened to me, but I have been fortunate enough to help some people along the way by simply sharing my story which makes dealing with everything just a little bit easier.  
Saw this quote and THIS is how I keep going:

Next post will be about some humorous hurdles and obstacles that I had to overcome now that I was home.
If there is anybody that has Ehlers-Danlos Syndrome (EDS), is in/was in a halo that would like to connect, please feel free to email me at

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Monday, May 23, 2016

First 3 Days After Neck Fusion

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 13, 2016 Post-Op Day 1:

It was post-op day 1 after having my neck fused from a posterior approach, C3-T2, due to Ehlers-Danlos Syndrome (EDS) which made my neck majory unstable. There really wasn't too much that happened this day because I wasn't allowed to get up. The medical staff wanted me to lay because when I was up, my pain was not controlled well. They tried to get me to sit in a chair but as soon as I stood up my heart rate shot up to 163, and the pain was horrid not only in my neck, but in my left scapula (shoulder blade) as well. My heart rate going up that high, that fast, ended the adventure of getting me up to sit in a chair rather fast, and it was back to laying down and not moving. I stayed in ICU the rest of the day and was transferred to the neurosurgery floor at 9:30 p.m. My parents told me I had a beautiful view of the Chicago skyline from the ICU room. Since my bed didn't face the window, and I couldn't turn my head, I had my dad take a picture with my phone because I wanted to see what it looked like. 

Chicago skyline
Possibly sleeping or I'm just laying with my eyes shut
April 14, 2016 Post-op Day 2:

It started off with my mom showing me a picture of the sun rising over Lake Michigan to start my day with a "happy" because the night was very long. I was in a lot of pain, and because of that, I didn't get much sleep (my mom too for that matter). One of my parents always stays with me when I'm inpatient in the hospital because of the lack of function that I have in my arms. As awesome as the nurses are, they can't be there every second to hand me my drink because it's an inch too far, or scratch the top of my head because I can't reach. I am so fortunate to have amazing parents that help me as much as they do. The first several days following surgery are always difficult and this time was no different. No matter how many surgeries you have, dealing with everything that goes on during the post-op phase never gets any easier. 
The "Happy" sun rising in the morning
So post-op day 2 was a difficult day. At one point I heard my mom ask the nurse if my face was swollen and if I had bruises around my eyes. When I heard the nurse say yes, and that it wasn't uncommon in patients who are on their stomachs for a long time during surgery to get swelling in the face, and bruising around the eyes from having pressure on the face, of course I had my mom take a picture so I could see what the heck I looked like. Obviously not flattering photos but if I'm going to write about what this journey is like, I have to include the good, the bad, and the ugly. 

It's hard to tell in these photos the darker tinges around my eyes
are the bruises

In the morning, my nurse told me at some point during the day, physical therapy was going to come by to get me moving a little bit, and have me sit in the chair. I knew I had to do this because it's the only way I was going to get better, and I knew it was the best thing for me from prior surgeries. To be completely honest though, I did not want to move at all. I knew how I felt when I stood up the day before, and I didn't want to feel the pain in my neck, and I was scared to feel the same searing pain in my scapula. I knew if I felt that same searing pain, something was wrong with my scapula because I've had the same exact pain before.

Knock...knock...knock on the door. "Hi Megan. We're here from physical therapy. Do you want to try to take a few steps to sit in the chair?" In my head I'm thinking, "No, not really, but thanks for asking" but instead my mouth opens and I quietly say, "Fine". 

It was about 3 or 4 steps from my bed to the chair. It seemed much farther than that. 
Wiping away the tears that started flooding from my eyes from the pain inflicted in my neck & L scapula from being vertical
Simply surviving and trying to come to terms with this new reality, and the possibility that my L scapula may be injured once again.
If I remember correctly, I lasted about 20-30 minutes sitting in the chair. My muscles started to go into spasm and it was time to go back into bed. As soon as I got back into bed, my nurse gave me more pain medication and muscle relaxants. Fortunately I was able to fall asleep for a little bit. When I woke up I had my mom help me get out of the hospital gown and into my clothes. One thing I absolutely hate is being in a hospital gown. I'd rather be in my own clothes. From having so much surgery, my mom and I have a system down and we are able to get me dressed pretty quickly. Compared to getting dressed after shoulder surgery when you have to keep your arm immobilized, getting dressed with a halo brace on is much easier in our opinion. 
Now that I was out of the gown, one of my parents was able to get a picture of the bandage so I could see.
Unbeknownst to me, physical therapy was coming back later on that day, only this time we were going to try to take a few more steps to go sit in the chair. Oh joy! (insert sarcasm). I appreciate the nurses and physical therapists who were encouraging me and telling me how well I was doing. At the same time it was irritating me because I never in a million years thought I would be dealing with a body like this when my joint problems started 10+ years ago. I would have never thought I would appreciate somebody encouraging me by saying, "Great job! You took a lot more steps to get to that chair than you did this morning!" Thank you to all those nurses who keep their patients motivated.

You can see the smile on the nurse's face on the left
It is moments like these when I wish my shoulders weren't trashed. It was so hard to slowly ease myself into the chair while putting pressure on my arms like this.
April 15, 2016 Post-Op Day 3:

In my experience, post-op day 3 is usually my worst day. As luck would have it, that day the medical staff had me up and moving more than they did the previous day. It was quite irritating trying to explain to the physical therapy staff that the main reason being vertical/walking was so hard was because of all the scapular pain that I was having, and that I needed some sort of support for that arm. As always, I got the response, "You didn't have surgery on your shoulder. You had surgery on your neck." In my head I thought, "Well obviously. The halo is a pretty good indicator that something was done to my neck." Regardless, my left shoulder was weak. Since I couldn't hold it up, it was pulling on my neck and it was a vicious cycle that created more and more pain. Finally, a different physical therapist came up with the idea to use a walker that had arm supports. Did it solve the problem? No. Did it help? A bit. Once again, the problem comes down to crappy shoulders/scapulas that aren't capable to really push things. I was/am thankful that she was trying to think of something to help me.  
The physical therapist that thought of using arm supports to help me. She helped push the walker for me which was much appreciated.
Sheer exhaustion and pain from the walking
Later in the afternoon the staff had me sit in the chair again. It did go better than before. They also gave me some pain medicine ahead of time so I'm sure that had something to do with it. 
Managed to get a tiny smile
My mom & I
Before the day was over, Dr. F stopped by with one of the other doctors that helped do the surgery on my neck. I asked if he had pictures of my neck, and if he did, I wanted to see them. He smiled and was nice enough to show me "the good one's" and let me take pictures with my phone. 
10 screws down, 4 more to go
Side view
Finally a STABLE neck. Only took some bone chips, 2 rods, and 14 screws later.
As bad as it seems in the moment it does eventually get better even though it may take a long time to get to where you want to be. Even while I wrote this post I could see the improvements that occurred in a matter of 3 days. Does it mean I was healed and didn't have a long way to go? No; but there was progress being made which is what's important. So to those that are at the beginning of some challenging journey, don't feel defeated immediately. When you look back, you will see that you have come far. Everything takes time and recovering from surgery is no different.
Next post will be about the final few days being in the hospital and getting discharged home. If there is anybody that has Ehlers-Danlos Syndrome (EDS), is in/was in a halo that would like to connect, please feel free to email me at

* *If you have a Facebook account, click here and "LIKE" my page: Meg's EDS Medical Journey

** Follow me on Instagram:

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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