A Brain Bigger than a Budget

Everything started September 3rd, 2017. I woke up that morning feeling off/nauseous. Threw up and felt a lot better (for about 20 mins). Started getting dizzy and feeling strange again and laid down in the car (we are on our way to the renaissance festival, yes nerdy, but soo much fun). I was in and out of feeling better and worse for a few hours. We got to the festival and were seated under a shaded stand and I started to feel very dizzy and my surroundings began to feel dreamlike. I warned my husband, Chad, that I was going to pass out or something weird was going to happen. Not even 2 minutes after the warning my hands clamped up and I couldn’t get them to release (looked like a crab claw). Then that same uncontrollable clamping moved up into my neck and tongue and down to my stomach. It felt like a huge charlie horse mixed with electrical currents causing my body to freeze in place. The constriction caused me to wretch forward and hold that position. Unable to release from that position for what felt like minutes I began to scream out in pain/terror. Then as if my begging somehow worked, my stomach and legs suddenly released and I was able to throw my feet on the stand in front of me to try and stretch the muscles, but without warning I was instantly arched up- like a bridge (yeah, the kind we all did as kids when we thought we were gymnasts)-for a few seconds and instantly plopped down HARD. The entire episode probably lasted 2-3 minutes. Afterward my tongue and hands remained contracted for well over 5 minutes. I could barely talk my tongue was so swollen. Then I started to pour sweat like someone had doused me in water. After that big attack I began uncontrollably shaking like I was cold but I wasn’t. My husband said I never passed out, but I definitely lost time. I was sent to the ER in an ambulance where they diagnosed me with a GI bug and sent me on my way.

About three days after my release from the ER my speech capabilities sort of just left me. I could hear everything I wanted to say in my head but as soon as I would try to physically say the word my mouth either wouldn't form the word or I would get stuck in a repetitious stutter. This was a first for me. I have never had issues speaking and knew there was a lot more going on than the ER said. I immediately called my Primary Care Physician to have her meet with me. Before I met with her I wrote down everything and anything I could think of that could be attributing to my ongoing slew of symptoms. I MEAN EVERYTHING. I gave her a list of 35 separate symptoms that could help her possibly reach a diagnosis. She sent me for an MRI and found a Chiari Malformation type 1.

Chiari Malformation type 1:

(Warning: medical jargon ahead {pun intended})

Chiari malformation type 1 is a structural abnormality of the cerebellum, the part of the brain that controls balance, and the skull. The malformation occurs when the lower part of the cerebellum extends below the foramen magnum (the large hole at the base of the skull which allows passage of the spinal cord), without involving the brainstem.

[In short my brain is migrating into my spinal column cutting off my spinal fluid]

Since my diagnosis I have seen my Primary Care Physician again, a Neurologist, and a Neurosurgeon. All of which have sent me for numerous tests and prescreenings. I am scheduled for a Posterior Fossa Decompression w/duraplasty and C1 Laminectomy on October 24, 2017. I am scared and nervous. Chad and I are barely three months into our marriage and this isn't what we had planned, but we are trying our best to get through this. I have pulled all of the money I have to my name to get me through my recovery period which still isn't quite enough. Chad of course is doing the same, but we still aren't quite making enough to cover the medical bills that are flooding in. This entire thing has thrown a wrench in our lives and I can't help but to feel guilty. Of course, I know this couldn't have been avoided.

Any amount would help to keep us above water. 

Money isn't the only way to help. I am sure Chad will be overwhelmed emotionally. Please be sure to check in on him and care for him just as much. I have no doubt he will do all he can for me and I need someone to make sure he feels he is just as cared for and loved.

Donations

  • Maggie Wheeler 
    • $50 
    • 32 mos
  • Leslie Godzik 
    • $100 
    • 33 mos
  • Olivia Pryor 
    • $100 
    • 33 mos
  • Amber Zumbiel 
    • $30 
    • 33 mos
  • Jake Heringer 
    • $50 
    • 33 mos
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Organizer

Dara Straley 
Organizer
Hebron, KY
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