Thrilled to again participate in a Hydrocephalus walk this year! Join my team!
Team captain Tomas Rodriguez here. Six brain surgeries do not define me. I am so much more than just a hydrocephalus warrior. I am an award-winning journalist; a swimmer; a 2018 U.S. national champion in Paralympic swimming; a six-time American Record holder; and, above all, an advocate for a world where brain surgeries and shunt adjustments are not the only treatment options for hydrocephalus.
Doctors identified a brain hemorrhage three days after birth. A formal hydrocephalus diagnosis followed days later. I had my first shunt placed on the right side of the brain at four months. Due to my body rejecting the shunt, at eight months a new shunt was inserted on the left side of the brain.
At the age of 3, the peritoneal catheter wrapped around my omentum and became obstructed. I was taken immediately to the emergency room. When I woke up from surgery, my mom realized I was blind because I was not naming my toys right (each figure apparently had a name). The neurosurgeon confirmed to my mother that there were clear indications that the optical nerve was damaged from the severe pressure I experienced for 10 days between having an MRI and the emergency surgery. It took me almost one year until I was able to see the speck of an airplane in the sky.
My neurologist told my parents to sign me up for swimming lessons. At the age of 10, I decided I wanted to take a step forward in the sport, so I started to swim competitively. When I was 12 years old, I started to feel the catheter pulling, sometimes making my shunt feel as if I was walking with broken glass in my brain. It was starting to happen more frequently. The pulling was making me sort of hold myself differently, as if it was pulling on my neck. It took almost three years until I finally had my next surgery. Scar tissue had formed around the catheter and the shunt, which meant they had to replace the catheter. Crystalized parts of my old catheter will forever remain in me, fused to the skin. The valve in my brain cannot be removed as it has scar tissue attached and removing it at this point, I am told, is dangerous.
I went for over a decade without the shunt being manipulated. But on June 4, 2024, an MRI revealed the pressure setting on the valve had drastically changed. The neurosurgeon, rightfully believing it is a programmable shunt -- we were unaware -- attempted to readjust the device with magnets. After three attempts, the physician feared it would ultimately be a traditional valve, requiring brain surgery. But God had a plan. On his fourth attempt to reset the valve, the device responded. Every day since, phantom pain around the valve and sleeplessness have become the new norm. I would not even wish this on my worst enemy.
Please join me in helping the Hydrocephalus Association reach its goal where, hopefully one day, brain surgery is not the answer. All funds raised go to the Hydrocephalus Association and support the different research initiatives.
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