Sunday, August 14, 2016

One Month Post 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.

May 12, 2016
It wasn't exactly the way I had envisioned the way things would be one month out from my multilevel posterior cervical fusion from C3-T2. My mom and I were actually on our way to Minnesota because I had an appointment with Dr. E the following day to evaluate my left scapula. The drive seemed exceptionally longer than normal but fortunately we made it there safely which is all we really care about.

One of the positives of this trip to Minnesota was that I was going to get to meet up with some friends I hadn't seen in several months. One of the friends I met was doing physical therapy in Colorado the same time I was. She and I had the same physical therapist. About mid April she told me she had an appointment with Dr. E on May 13th. I sent Dr. E an email asking if it was possible if I could come in that day because I would be a month out from the neck fusion, I needed to know what was going on with my scapula, and it would be nice to meet up with my friend. Dr. E was nice enough to let me come in on that day.

May 13, 2016
The morning started off with me not in the greatest of moods. My neck and my left shoulder blade were hurting really bad from the drive up, and the anticipation of my appointment was making me feel sick. The good thing though, is Dr. E is ALWAYS a pleasure to see and can pretty much always make you smile even when you're not in the greatest of moods. One thing to know about me, is that when I am nervous I pace the hotel room back and forth which drives my mom absolutely nuts. She oftentimes says, "Do you have to pace so much?" and I always say, "Actually I do."

To get the pacing to stop, my mom suggested I get ready and we go downstairs to the lobby to grab some breakfast before going to my appointment. Getting ready was difficult because I didn't feel good. After I was dressed and ready to go, I reluctantly agreed to go to the lobby because I didn't want to be seen in the halo (sometimes the lobby is really crowded in the mornings at this hotel).  

Fortunately the lobby wasn't crowded. When we walked in, there was a lady that looked at me and said, "Hi, are you Megan?" I turned to my mom because I had absolutely no idea who she was and then looked at her and said, "Yes..." Shortly thereafter my mom and I found out that she was traveling with my friend and my friend told her I was in a halo brace. I suppose that could be another good things about being in a halo depending on how you look at it. The chances of at least two halo people being in the same room is slim to none, which in turn makes you very easy to spot. At the same time, everyone noticing you when you walking into a room is horrible when you don't like attention.  

This is who I met in CO. After we took this picture, I texted it to our physical therapist saying, "Your CO patients say hello from MN!"
The time had come where it was time for me to meet with Dr. E. As always, he walked in and gave me a hug, only this time I told him to be careful so he doesn't poke an eye out on my halo. He helped me get the brace off of my arm and get my sweater off. He commented on how he really likes the arm braces that were made for me to help support my arms. It was difficult for him to evaluate my scapula because the halo vest covers my upper back, but even with that, he could see that my scapula wasn't sitting properly and he confirmed my suspicions. When my trapezius muscle was detached, and then reattached to my neck to do the fusion, it pulled on the scapular repair from surgery in January 2015.

To those that are new to reading my medical journey, I've had a lot of surgery on both of my shoulder joints & shoulder blades. On January 28, 2015 for the first time ever, I had a new procedure done where they took an Achilles tendon allograft, and attached it to the bottom of my scapula and then to my thoracic spine. I also had 4 of my muscles that detached from my scapula reattached; levator scapulae, rhomboid major, rhomboid minor, and my lower trapezius. I would put up my amazing & gory pictures of this surgery but they're too graphic compared to other surgeries I've had done. It would probably gross out too many people.
We're not completely sure if my trapezius muscle detached completely, or if it's really stretched out, but either way, the change in tension messed up with the dynamics around the scapula causing it to become unstable once again. At this point Dr. E told me that he will have to take another allograft (cadaver) tendon and secure it to my scapula and then to my spine to stabilize it. I asked if he would be able to do surgery on my left shoulder joint at the same time but unfortunately the bracing is different and the complication risks increase. He mentioned he could potentially pin my shoulder joint in a neutral position and we can see/hope it will stabilize itself by getting stiff, but doing both procedures together is an absolute no. After hearing this information, I started to cry because I was so overwhelmed. I told Dr. E I wasn't mad at him; I was just really frustrated at the circumstances. When I signed the consent form to have my neck fused I never considered that it would interfere with my scapular surgery. Dr. E grabbed the Kleenex, and told me not to cry because we will figure everything out and hugged me again. If there's one thing Dr. E doesn't like, it is seeing his patients cry. 
The circled area is where I felt things
stretch out or tear after the neck fusion.
After my mom and I left the hospital we went back to the hotel and I tried to rest for a little while. The best way to describe how I felt was just utter exhaustion; both physically and mentally. Fortunately later that day we were able to have a good "pick me up". My mom and I went with our friends to see a movie in the early afternoon, and then later that evening we went to dinner. As always, with all of the consuming medical nonsense, my family and I try really hard to offset it by making sure to have some non medical fun. Meeting up with our friends was a great way to do this.
May 14, 2016
My mom and were going to go to our other friends' house. We met them at the same hotel last fall and had one of those instant connections. In reality, we've only known them for about a year but it feels like we have known each other for a lot longer than that. They too, are an awesome mother/daughter team. We each have different medical issues but at the end of the day, there are a lot of crossover similarities with the struggles we deal with.  Both the mom's get each other, and so do we as the patients. We all have a very good understanding of one another, and the struggles that come along with chronic medical issues. It's not every day that you meet someone that "gets you". When you do find those people, you cherish them because you feel less alone.
Our mother/daughter duo friends.


As always, if you have EDS, are in a halo brace, and want to communicate, you can email me at kingmeg19@gmail.com

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