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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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

https://www.pinterest.com/pin/AchbV1Lt0hR6vdA_VDEq8ij3W8d0mLu4_VbGDmkioNjFgrufnESXDGA/

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.

https://www.pinterest.com/pin/164944405080205530/

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. 

http://www.quotes-central.com/519-someday-everything-will-make-perfect-sense.html

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 kingmeg19@gmail.com

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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. 

https://www.pinterest.com/pin/49047083417146545/

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.
 http://boroondaraosteopathy.com.au/pinched-nerve-in-the-neck/

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, "LISTEN TO YOUR BODY!"

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 kingmeg19@gmail.com 

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

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