Brianna, 17

Young adult living with hydrocephalusMy name is Brianna. I’m seventeen and I was born with hydrocephalus due to Dandy Walker Syndrome. My life was perfect up until eighth grade, when I had my first emergency revision after hitting my head.  I got out of the hospital on Christmas Eve.

After that, I began experiencing more health problems. My memory worsened, my balance deteriorated, and the numbness and weakness on the left side of my body increased. Worst of all were my headaches, which became more severe. I also struggled with dizziness. School became very difficult for me. Nevertheless, I graduated from middle school that year at the top of my class.

High school was a different story. Freshman year was an uneventful, revision-free year. However, sophomore year was the year that was arguably the worst year of my life. I suffered from severe headaches and my shunt calcified. I had a non-emergency surgery to try to remove some of the calcification and then had to go to the emergency room a few days later because my abdominal incision was leaking a clear fluid, which I found out was CSF. I was rushed to the ER once again.

I continued to experience debilitating headaches and my grades and personal life began to suffer severely. I lost close friends because they couldn’t handle my health problems and I failed three classes because I was in too much pain to be in class. I became suicidal and had panic attacks every single day. I cried every single night. I hated myself and I hated my condition and I just wanted it to end. I didn’t end it, though. I survived. I passed on to junior year, which I spent homeschooled. A tutor would come to my house every single day for one hour. She would bring me homework and tests, and we would work through assignments together. It was, thankfully, a very easy year for me, thanks to her. Nevertheless, I had two more surgeries during junior year. My family and I thought my shunt was over-draining so we put a shunt-assist in, which ended up being removed a day later because the shunt wasn’t draining enough fluid as a result.

So here I am today. How am I today? I’m not as good as I want to be. My headaches are debilitating even though my neurologist has tried multiple medications to manage them. There really isn’t a day that my head doesn’t hurt, with some days hurting more than others. I’m in my senior year of high school and I plan on going to college to study medicine. Whether I end up being a phlebotomist, radiologist, or pathologist truly depends on the state of my physical health in the coming years.

I’m determined, though. I refuse to let hydrocephalus run my life. I’m strong. I won’t let it win. This is my life.

Tell us about your journey with hydrocephalus!

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