Close Your Eyes and Count Backwards From Ten

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

Waking 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

brain surgery, but neither is a permanent cure. Shunts, the most common treatment, are a mechanical device placed on the side of your head with a draining tube inside of your body.4 ETV brain surgery is less common but less invasive. A new pathway for CSF is created by creating a small incision at the top of your head and opening a new spot in the ventricles.5 There weren’t a lot of neurosurgeons in the area that perform ETVs near my hometown, but I luckily found one that excelled at the surgery in Rochester, Minnesota.

My hardest barrier was comprehending I was okay; the headaches, blackouts and blurs in my vision no longer existed.

My brain surgery took place on September 17, 2018 at Mayo Clinic. It was a relatively short procedure, and I only had to spend one night in the hospital for recovery. After confirming I had no postoperative complications, I returned home to recover. The week off school was relaxing and full of pain medications; nothing could touch the incision. About a week later, CSF started leaking from my incision, and I had to be re-stitched. In October, about a month after my new stitches, they were removed. My recovery period was short and relatively easy, and I had a check-up MRI, eye exam and neuropsychological evaluation three months later.

Although it seems like a fever dream now, my brain surgery and condition have affected me in ways I never noticed before. After my recovery, I used work and school to distract myself from the impactful events that had just happened, but when the pandemic started, I was able to relax and allow myself to feel every emotion that had been building up. My hardest barrier was comprehending I was okay; the headaches, blackouts and blurs in my vision no longer existed. My headaches used to last for days or weeks straight; it didn’t feel normal to feel healthy, and I am still not completely over this barrier today. Whenever I get headaches or feel tired, I fear my condition has returned. It is a mental jump that I work on everyday to overcome; there is always a constant worry that something is wrong. Yet, with annual MRIs and constant reassurance, I have been able to live my life without over-stressing about my hydrocephalus.

Surgery was an opportunity for me to grow and have a fresh start. Everything around me was the same—my friends, my school, my town—but I felt like a completely new person. There were countless positive outcomes aside from my health; I got my first job after my three-month check-up, I had more time to focus on school and I could exercise again without getting headaches. I felt healthier and whole, physically and mentally. It felt like my slate was wiped clean and I had a chance to start over. Instead of constantly worrying about my health or attending appointments, I was able to focus on living my best life and the future to come.

Brain surgery can drastically change your life—positively and negatively—but it can also offer new perspectives and ways of looking at life. I’ve learned how important it is to live in the present moment, especially since I have a planner personality and enjoy having my next five steps planned out. Although I still love planning out my dream future, I’ve tried to live more impulsively, whether it be through spontaneous adventures or going to new events. I try to meet new people and try new things constantly. A few months after my surgery, my family and I took a trip to Seattle, Washington, which was my first major trip and big-city experience. I adored the city, and thinking back on the trip always reminds me of how life changing new experiences can be. Surgery gave me a genuine appreciation for life and gratitude for the opportunities I have been given, such as my Seattle trip or college experience at Madison.

I have been so lucky with my experience because of my surgeon, mother, friends and incredible support system all around. A majority of hydrocephalus patients do not get as lucky as me. Congenital hydrocephalus drastically affects a person much worse than mine did, and most patients face countless challenges that I have not.

Typically, congenital hydrocephalus occurs in two out of every 1,000 births in the United States, but there still isn’t a permanent cure for it. It affects so many people and needs more support.6 Although I am basically “cured,” I, along with countless other hydrocephalus patients, will never be considered fully healed. The Hydrocephalus Association offers many great resources for patients, those looking to support a patient and those looking to help fund researchers looking for a cure.

Although hydrocephalus is scary and definitely overlooked, with a good health and support team, bouncing back and finding the positives became a lot easier. If it wasn’t for the people around me, I wouldn’t be where I am today. My experience made me appreciate those people more. Drastic changes like brain surgery aren’t necessary to transform your perspective on life. Living in the moment and appreciating life can be found in the littlest things or moments. Brain surgery can undoubtedly change your life, but with a positive outlook and a special appreciation, it becomes an easier change. ■

It felt like my slate was wiped clean and I had a chance to start over. Instead of constantly worrying about my health or attending appointments, I was able to focus on living my best life and the future to come.