LIFESTYLE
Close Your Eyes
and Count Backwards From Ten MY JOURNEY WITH HYDROCEPHALUS AND BRAIN SURGERY
Written by Sarah Kirsch, Culture Staff Writer | Graphic by Rosie Quinlan, Contributing Graphic Artist
W
aking up from brain surgery feels like taking your second first breath. I woke up with tears streaming down my face. Everything around me was a little bit blurry, and I felt like a completely new person. Major surgery can sneak up on a person and change a life forever. On July 27, 2018, my life changed forever. A regular eye exam transformed into weeks of tests and scans after my optometrist discovered there was something wrong in my brain that was creating pressure on my optic nerves. Not only was the problem visible by my decrease in peripheral vision at the exam, but also by my previous years of intense headaches, blacking out when I stood up and fuzziness in my vision. What I thought would be a regular end to the summer before my sophomore year of high school turned into countless visits with ophthalmologists and neurologists at my local hospital. I was diagnosed with chronic headaches and was told to track them; the next week, I got my first MRI scan of many. Initially, the doctors believed I had pseudotumor cerebri, a condition where your brain reacts to a tumor that isn’t actually there.1 This was disproven with a lumbar puncture, also known as a spinal tap, where a needle is inserted into your spine to see the flow of cerebrospinal fluid. In late August 2018, I returned to the hospital for my second MRI in hope they would discover what was wrong. On my second scan,
a radiologist found a webbed blockage preventing my cerebrospinal fluid (CSF) from flowing normally, causing a buildup. In early September, I was officially diagnosed with hydrocephalus and was rushed to meet with a neurosurgeon on that same day. Hydrocephalus, often called “water on the brain,” occurs when CSF builds up in the cavities—also known as ventricles—deep within the brain. The fluid buildup increases the size of the ventricles, putting pressure on the brain. This condition is most common in infants and those over 60 and is often congenital, meaning people have it as soon as they are born. The symptoms of hydrocephalus overlap with many other conditions and vary within age groups; the most common are headaches, blurry vision, unstable balance and personality changes, ranging from irritability to mood swings to memory loss.2 As a 15-year-old that was preparing for school to start, it was exhausting to constantly have to attend appointments. My mental health was already declining because of past experiences, and the continuous scans, medicine and hospital visits drained me. In a rushed sense, it took over my life; I felt disconnected from my body and brain. There are two typical treatments for hydrocephalus: a shunt or an endoscopic third ventriculostomy (ETV).3 Both require 2
1
“Pseudotumor Cerebri,” Hopkin’s Medicine, accessed April 2022.
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3
Mayo Clinic Staff, “Hydrocephalus,” Mayo Clinic, Sep. 3, 2021 Ibid.