Ryan

I was born with an arachnoid cyst and had a shunt placed at age four by Dr. Schneider on Long Island. Yet despite that, I lived most of my life unaware that I had hydrocephalus.

At 19, I began experiencing strange headaches and overwhelming fatigue that kept me bedridden for months. Despite clear neurological signs, every scan and test came back normal. Doctors ruled out a shunt malfunction—and with that, the investigation ended. I got better, somehow, and life carried on.

In my mid-20s, the symptoms returned—this time, presenting as cardiac issues. I was hospitalized repeatedly and even underwent a failed cardiac ablation. But once again, no one saw the true cause.

Eventually, I was diagnosed with Dysautonomia—specifically postural orthostatic tachycardia syndrome (POTS) and neurocardiogenic syncope (NCS) —by the Cleveland Clinic in Weston, Florida. Though it explained some of my symptoms, treatment offered little relief.

My career collapsed. I lost my mobility, spent time in a power wheelchair, and my first marriage fell apart. My life, piece by piece, was slipping away.

Over time, my symptoms eased just enough to return to work. One issue that never fully went away was memory loss, something I still navigate today. Despite that, I dove back into aviation and helped launch an airline focused on government flying.

Then came the turning point—tragic but revealing. During Operation Allied Refuge, while landing in Kulob, Tajikistan, I collapsed aboard the aircraft. That moment became my sign to slow down. I transitioned into a new phase of my career and relocated to New Jersey.

Not long after, I boarded a flight for work and went into sudden cardiac arrest. I was told I had no pulse for 9 minutes. Thanks to an incredible flight crew and a nurse who happened to be onboard, CPR saved my life. For the next 10 days, I was in a near-coma. Doctors couldn’t understand why I was suffering from both neurological and cardiac symptoms with no clear cause.

Then, everything changed.

A neurology resident and an ophthalmologist on rounds noticed signs of papilledema—swelling of the optic nerve that often indicates increased intracranial pressure. Within 20 minutes, a neurosurgeon arrived. That’s when I was finally told I had hydrocephalus —after decades of being overlooked. My wife and best friend approved a bedside procedure, and shortly after, I awoke… lucid, clear-headed, and truly “awake” for the first time in as long as I could remember.

I had a second shunt placed. Like many others with hydrocephalus, I’ve since undergone a revision. But today, I live with strength. My health is stable. My career is thriving. My family life is better than I could have ever imagined. And now that we fully understand my case, I live empowered—not scared.

My message to the hydrocephalus community is this: Never stop advocating for yourself. Trust your body. Ask questions. Demand answers. Don’t accept “normal” results when you know something is wrong. Early detection won’t just improve your life—it may save it.

And when you find the right medical team, everything changes. For me, that person is Dr. Singla, my neurosurgeon. He is, without question, the most important resource in my healthcare toolbox. When you find someone who truly understands your case, you’ll know exactly what I mean.

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