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When most people start having headaches, it usually doesn't mean anything is wrong. It's probably just caffeine withdrawal or they need to drink more water. Not in my family. Headaches that can leave you unable to move or speak tend to run in my family.
It was September of 2014 when I found out that I was joining that group. I knew when I started having the headaches that something wasn't right. It was how my sister started before she was diagnosed. She had been diagnosed a couple of years before that. It didn't surprise me that I might have it because I had written a school assignment about how it could be genetic or familial. I had even put in there that family members should be checked for it even if they don't show any symptoms.
I went to the doctor because I was sick, and after hearing my family history, she sent me for an MRI. Once the MRIs were done, I got to go back home. I was laying on the couch trying to sleep when the phone call came. I pretended to keep sleeping so I could hear what they said and have a chance to figure out how I felt about the results.
When my father hung up the phone, he asked my mother if my other sister had ever gotten an MRI. She said, "Yeah, she got one a couple years ago and they said everything was clear." She asked, "Why?" My father replied, "She has Chiari Malformation Type 1 like her sister and they want her to do another MRI so they can get a better look. We need to take her to see a Neurosurgeon and find out what to do."
I knew what that meant. Chiari is when your brain is too big for your skull and falls into the hole, at the base of your skull, where your brain meets your spine. That starts to cause a lot of problems, including unexplainable headaches that are often mistaken for migraines. It also meant that if my symptoms couldn't be controlled by medications, then I would have to have a decompression brain surgery.
I laid there for a while thinking about what that meant for me. It was the beginning of my senior year in high school. I had thought about going to a college in Fullerton, but if I had Chiari and my symptoms got worse, then I would probably need to do what my sister did. My sister went to online college for her degree.
I had a feeling I was going to have to do that instead of a normal college. I also wondered if I would be able to keep marching in my high school band. I would quickly find out that I couldn't continue with marching. I wasn't that bothered by the possibility of online college, but I really wanted to march in my last high school field show, but that didn't happen.
My mom was sitting on the couch next to me and I could tell they were waiting for me to wake up on my own before they told me what they had found out. Once I got over the fact that they were absolutely sure that I had Chiari, I was surprisingly calm for some reason. I had thought that after one of my sisters was diagnosed and the other one was fine, then it meant that I would be more likely to have something.
I should have been more afraid of the fact that there was a possible brain surgery in my future, but it didn't bother me that much. Of course, there is one thing you should never say to someone with Chiari, "At least it's not cancer." Illnesses that have symptoms that you don't always see are impossible for those who don't have it to truly understand what it feels like.
While I was laying there getting ready to open my eyes and face my parents, all I could think was, "Just Breathe." I also kept picturing a sunset that I had seen while we were driving home from somewhere on a family trip. It had been so beautiful and peaceful for a few minutes.
Finally, I opened my eyes and my mother said, "You have Chiari Malformation Type 1 like your sister." Sure enough, I did eventually have a brain surgery.