The Mystery Illness
By: Brookelyn B.
My life changed in 6th grade. No, not because of a teenage revelation or friendships being made and broken, my life changed because of my brain surgery. In the summer before 6th grade I was diagnosed with Dysautonomia. Dysautonomia is an autonomic nervous system dysfunction that can affect things such as your blood pressure, gastric functions, and general bodily functions. After my diagnosis we thought that was the end of it, all the tests and doctor’s appointments had to be over right? No, that was just the beginning.
After 6th grade had started, I started suffering symptoms that we thought were from my Dysautonomia or my Gastroparesis, until one day my gastroenterologist had a hunch. He was concerned about one of my main symptoms that I was getting headaches generalized in the back of my head so he decided to do an MRI (Magnetic Resonance Imaging) on my skull. We went back to his doctor’s office a few weeks later for the consensus on my MRI, yet he recommended us to a neurosurgeon because he saw that my cerebellum (that big lobe on the back of your head) was falling into the opening to my spinal canal from my skull and leaking spinal fluid into by spine. Now my parents didn’t tell me why we were going to the neurosurgeon at first. I mean I was 12, if you told me then that my brain was falling out of my head I would’ve FREAKED. I’d like to think I’m more even tempered now. We went to the neurosurgeon and he diagnosed me with an Arnold Chiari Malformation, after a few appointments we decided that I would have decompression surgery to alleviate the pain and risk associated with a Chiari Malformation.
I was diagnosed in December of 2015 and on June 16th 2016 I had my decompression surgery. I remember this specifically because the movie Finding Dory came out the next day and I wouldn’t be able to go out for at least a month after the surgery. My older brother is my absolute best friend. He’s 7 years older than me and the day before the surgery we stayed up until 4am playing video games since I couldn’t eat after midnight. We had to leave at 5am since the surgery was scheduled for 8am. When we got to the hospital they set me up in a pre-op room and they had me wipe down my entire body with some sort of weird alcohol pad, I did not enjoy this. After they had gave me some warm blankets then the plethora of anesthesiologists, nurses, and doctors came in until we finally saw my surgeon. He had my parents sign the final consent papers and then I was off into surgery.
I’ve been told the surgery was 4-5 hours, I obviously don’t remember that but I do remember bits and pieces from the PICU (Pediatric Intensive Care Unit). I remember waking up and feeling terrible. I had a catheter in and I quickly learned you cannot lay on your other side as they pull – it hurts so badly. I remember throwing up blood and not eating for days. I had an IV in and after brain surgery, it’s expected that you don’t eat for a few days. This was a vicious cycle until I got my catheter out and they finally decided I could be moved to the Pediatric Ward, which is basically just less intensive than the PICU.
I remember all of the Pediatric Ward. My grandma was there, she’s a nurse, but I still wasn’t walking more that just being helped to the bathroom, but this worried my doctors and nurses because if I didn’t start walking again I would have to be taught to. I had been in there for 4 days and that’s longer than normal, but we believe that it was just due to my past medical history I’m a slightly more fragile patient. I also still wasn’t eating, well I was I was just immediately throwing it up. After a while they kind of forced me to try to walk, I hope you can understand my hesitation, I felt worse than ever. I walked around the ward and the nurses were relived at my progress, the next day I ate without throwing up and they finally let me go home.
The car ride home was rough as any sort of bump felt like it jiggled my skull. This is sadly not an exaggeration. After I got home it was basically just being in bed for a few weeks. Thankfully decompression surgery is one of the easiest recoveries for a brain surgery and I was in 7th grade 2 months later, even though we later learned that I shouldn’t have been in school, it’s the thought that counts! I am now 15 and that surgery is something I think about every day. I also did end up seeing Finding Dory a few months later and it was great. I hope you can take something out of this. My intention was for you to know that anyone can get through anything if you put your mind to it, but if you just want to watch Finding Dory after this, I’ll take that too. Just always remember to “just keep swimming”.