Tuesday, September 13, 2016

First Sign of Trouble

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.

How life is ironic: 
It's ironic for me writing this post because it coincides exactly with where my life has been the past 2+ weeks. It's really weird writing it because it's like foreshadowing. Every concern that I had at the end of May was just confirmed exactly 18 days ago. So now you're probably wondering what happened at the end of May? I've been holding off on writing this post because I didn't know how everything was going to play out. I wasn't emotionally ready. In order for me to write these posts, I have to come to terms with everything and know the end result. Now that I know what happened, I can let you know what happened at the end of May. 

Once I returned back home from Minnesota on May 16th from seeing Dr. E I slept a lot the next several days. There really isn't anything worth writing about. It would be like me writing about how paint dries on a wall; nobody wants to read about that. Why? IT'S BORING! 

May 22, 2016

I was doing a bit better this day. My mom and I went to the nursing home to go have lunch and visit my grandpa. It was a nice day outside so we were able to have ourselves a nice little pinic on the patio. We started bringing this little portable radio that syncs to my phone and we play my grandpa's favorite types of music: Big Band, Judy Garland, Doris Day, Connie Francis, Frank Sinatra, Dean Martin...the list goes on. My grandpa isn't as conversational as he used to be so music is nice because it fills in the silence.

My grandpa and I having our picnic
May 26, 2016

It was a big day. It was the day that my custom cervicothoracic brace was getting made aka custom CTO brace. This is the brace that I'll go into once the halo brace is removed from my head.

Before heading to my appointment I had my mom help clean my torso. Apparently my dog Daisy felt it was necessary to help out too...or stand guard.
Daisy keeping watch over me
One thing I have mentioned before is that when your arms suck and you can't pull/push off with them then you end up substituting with other body parts. For me, that would be my feet. On this particular day the tops of my feet were hurting me quite a bit. When I looked at the tops of them I knew why. They were all bruised from hooking my feet on whatever things I could to pull myself up.

Now that I was clean and ready to go, my mom brought me to the orthotics building to have my new brace made. I had no idea what to expect. I had never had a brace like this made before so I had no clue what it would be like. I do know now it's like being made into a human mummy. Pictures explain better than words do so I put together a few collages to explain what's going on in each picture.
Top left: front of halo was removed to mold my front torso
Top right: plastic was put over my clothes and a cloth over my face
Bottom left: cloth being cut to shape how the plaster will mold my face
Bottom right: final look with the cloth...my mom kept teasing how I look like a nun from The Sound of Music

Top left: hard plaster being applied to my chest, chin, & jaw
Bottom left: plaster hardening. You're not allowed to move any muscles in your face while this is happening.
Right side: Ab workout galore. Between the weight of the halo, the plaster, my body and not being able to use my arms, I'd say I got part of my workout in for the day.
Left side: back side of plaster hardening. This was applied after the back portion of my halo was removed
Right side: this is when I immediately knew there was a PROBLEM! As soon as the back portion of my halo was removed, I couldn't hold myself up and started leaning forward. As this happened, I felt my skull, bones C1 & C2 slide forward. I had no way to verbally say anything because I wasn't allowed to talk since the plaster was hardening. Horror was going through my head and I felt myself starting to panic. The best I could do was gesture with my arms to get pillows between me and the chair to try to hold me back. It was really scary because my head shouldn't have been able to move since the front portion of the halo brace was still on me. So why did it?

This is the finished product of the custom cervicothoracic brace aka custom CTO brace. We picked it up about 10 days later.

Once the halo was secured back on my head I felt terrible. I felt like my head was like a chicken pecking with its head forward. I knew my skull and top two bones weren't in proper alignment. I didn't tell the orthotics guy because I needed my neurosurgeon to correct this problem. After my mom and I had left the building to go into our car, I leaned forward and felt this painful loud pop at the base of my skull specifically on the left side. I immediately started crying and saying over and over again my upper cervical spine is unstable and needs to be fused. I was horrified.

The next couple days I felt horrible. It hurt to be upright. It hurt to lay flat. It hurt to walk. It hurt to sit. The only way I was  semi-comfortable was if I was in a reclined back position. Next thing I knew, on Sunday May 29, 2016 I had sporadic shaking down my right leg like I had in Fall 2015. Immediately red flags started going off in my head because my physical therapist(s) always thought there was a problem in my upper cervical spine. Later that evening I emailed my neurosurgeon Dr. F about what I felt and symptoms I was experiencing. He wrote back saying he would have the nurse schedule an appointment for a halo readjustment, but on my movement fluoroscopy (like a movement x-ray) in Feb. my upper cervical spine looked okay. I emailed Dr. F simply stating something moved forward.

June 1, 2016
It was the day of my appointment with Dr. F to have my halo readjusted and the day started off horrible. I woke up on my R shoulder with burning nerve pain and my R scapula, shoulder joint, and clavicle (collar bone) were all dropped forward. I was in so much pain.

Not a good way to start the morning. The halo is supposed to hold my back up straight but because my R shoulder girdle was all dropped forward I was stuck in this weird, painful position.

On the way to the hospital I emailed my shoulder surgeon, Dr. E, what was going on in the event the hospital wasn't able to get my shoulder back in place. He was in surgery all day but said to have him paged in case I run into a problem. It was reassuring knowing there was help if need be.

Once we got to the hospital, I was brought back to an exam room. The resident walked into the room with eyes like Bugs Bunny and asked how long my head has been in this position. I told him one week. He then said, "One day?" and I said, "No, one week." He immediately got up from the chair to go grab Dr. F.

When Dr. F walked in, first thing he noticed was my shoulder. I told him don't worry about it because it happens all the time, please just fix my head. Dr. F had me sit in the chair. He had the resident hold my head while he loosened the bars with the wrench that sends shivers down your spine due to the noise. Once the bars were loosened Dr. F grabbed the bar over the top of my head and literally slid my skull back into place. My mom was in the appointment with me and she has never seen a skull move like that before. Dr. F then continued to adjust the bars to find a good skull/neck position but I kept getting a coughing reflex and a lump in the throat sensation. It wasn't until I said, "More traction to my head!" that I felt better.

Dr. F then said I had to go to the emergency room even though I said,  "It's fine I'll deal with it at home he." He said he had already called down to the ER so I had to go. While in the ER lobby I overheard one of the staff members say that I'll be in bed 3. I could see bed 3 from where I was sitting so I told my parents I will walk. As soon as I started walking there was shaking down my R leg again.
When I got to my room I immediately told my nurse I'm here for my shoulder but there is a problem with my R leg. My shoulder was looked at first because that's why I was sent initially. Surprise, surprise, my shoulder history was too complex and nobody would touch me. The ER doctor asked me what I needed to get things back into place and I told him IV Valium. After a lot of that, my muscles finally started to calm down enough so my arm was back by my side.
Uncomfortable would be an understatement

This is what we call improvement; arm is at least closer to my side

Now that my arm was relatively by my side, my leg could be looked at. Neurosurgery was sent down but there was nothing that could be done for it. Like past times, it was something that just had to run its course. The theory is that when my head was readjusted, swelling occurred putting pressure on my spinal cord, or there was a stretch on my spinal cord that occurred. Either way, it irritated the nerves that control walking to my R leg.

Here is a video of what the walking looked like:

The gut feeling that I had that there was trouble on this day at the ER...I was 100% right. I just had surgery again 2 weeks ago. Just goes to go show you, YOU know your body best. Since I'm only 2 weeks post-op it's harder for me keep up with my blog regularly. * *If you have a Facebook account, click here and "LIKE" my page: Meg's EDS Medical Journey 
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The more awareness about EDS, shoulder/scapular injuries, craniocervical, and cervical spine instability the better!! As always if you wish to communicate you can email me at kingmeg19@gmail.com