Edgar, 17

Young adult with hydrocephalusI was born a healthy little boy, head full of jet black hair. The doctor then noticed my unusually large cranium circumference. After a series of tests, I was diagnosed with congenital communicating hydrocephalus, which changed my life forever.

My first shunt revision was in 2004 when I was attending kindergarten, as a result of my clumsiness. I was sitting at the lunch table, fooling around, and suddenly I leaned back and lost balance. Smack. I ended up with a bruise on my head, but I shrugged it off and carried on with my day as usual. That same night, I started to have severe migraine-type headaches and vomiting without any signs of nausea. I didn’t know I was in shunt failure at the time, figuring I was experiencing a bad flu of some sort. I was rushed to the emergency room. The whole process was quite horrifying for the young, naïve four-year-old that I was. So. Many. Needles. It turned out that the impact had dislocated my shunt valve from the proximal catheter. The surgical team did the best they could, but they could not remove the proximal catheter, leaving quite an awkward chunk.

Years flew by and fast forward to freshman year in high school. I was in the Naval Junior Reserves Officer Training Corps at the time, and the countless miles run and push-ups done finally wore in on my shunt. I woke up one day with a headache, disregarded it and carried on with my regular school day. Little did I know that the distal catheter dislocated from the shunt valve, causing a five millimeter gap. I suffered through the day and barely make it home alive, only to pass out on my bed. That night, I could no longer bear the pain, so I rushed to the emergency room. Lo and behold, after the many years of not replacing my shunt, I outgrew it, and the physical strain had pushed it over the limit. Two weeks later, I was back in the operating room to fix the tangled distal catheter in my peritoneal cavity from the excess scar tissue.

My life with hydrocephalus has taught me so much about not only the condition itself, but about life too. I am now a senior in high school and because of my undying passion for aviation, I am planning to attend college in Seattle for an aviation Science major.

Tell us about your journey with hydrocephalus!

Hydrocephalus affects each of us differently. Share your story with us! We will feature the amazing individuals in our community on our website and through social media.

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If you would like to share your story, please email it to: ines@hydroassoc.org with the subject line “Share Your Story”.

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