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It is a neurological condition where excess cerebrospinal fluid (CSF) accumulates in the brain, increasing pressure inside the skull and potentially damaging brain tissue.
Causes include birth defects, genetic factors, brain injury, tumors, infections, hemorrhage, or failure of CSF absorption.
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Congenital (present at birth)
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Acquired (develops after birth)
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Communicating vs. non-communicating/obstructive
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Normal Pressure Hydrocephalus (older adults)
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Compensated/arrested and external hydrocephalus
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Symptoms vary by age:
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In infants: rapid head growth, bulging soft spot, irritability.
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In children: headaches, nausea, vision problems.
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In adults: gait disturbances, cognitive decline, urinary incontinence (especially in normal pressure hydrocephalus)
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Hydrocephalus has no cure, but treatments allow for a manageable life. Regular monitoring is essential for early detection of complications.
Most commonly, insertion of a shunt (a tube to drain excess CSF), or less often, an endoscopic third ventriculostomy (ETV).
Potential issues include shunt malfunction, infection, over-drainage, headaches, seizures, hearing loss, and developmental delays.
Many people can, with appropriate treatment and monitoring, though some may experience physical or cognitive challenges.
I'm not a medical professional—just a patient sharing her personal journey with hydrocephalus.
Please consult your medical team before making any health decisions. My story is not medical advice. 💙
My Journey with Hydrocephalus
Living with hydrocephalus wasn’t something I ever expected—but it’s now a part of my everyday life.
I was diagnosed with obstructive hydrocephalus at 18 years old, just a few months after giving birth to my son. Looking back, the signs were there: the intense migraines, dizzy spells, numbness, and the feeling of not being able to “wake up” fully. At the time, I thought they were just side effects of pregnancy and exhaustion. But the symptoms didn’t go away.
Eventually, doctors discovered I had a buildup of cerebrospinal fluid in my brain, causing dangerous pressure. That diagnosis changed everything.
Since then, I’ve undergone multiple brain surgeries and had to adapt to a new reality—one that includes living with a VP shunt and managing the challenges of an invisible illness. There have been setbacks, revisions, recoveries, and relearning.
I’ve been wheelchair-bound. I’ve had to relearn how to walk. And still—I kept going.
Hydrocephalus may have tried to slow me down, but it hasn’t stopped me. This space is where I share what I’ve been through: the hard days, the victories, the lessons learned, and the hope I carry with me.
My story isn’t advice—it’s just a look at what life with hydrocephalus can look like from someone still living it.
People often ask me what caused my hydrocephalus. The answer isn’t easy to say out loud—but it’s part of my truth.
It started with a traumatic brain injury.
On June 14th, 2011, I sustained a head injury from an act of domestic violence. At the time, I was eight weeks pregnant. I didn’t know it yet, but that day would change the entire course of my life—and not just because I was becoming a mother.
Over the next few months, the headaches came and went… until they didn’t. They turned into blinding, relentless migraines. I couldn’t wake up when my newborn cried. I felt like I was stuck in a fog I couldn’t shake. But I chalked it up to stress, childbirth, recovery—everything but what it really was.
It wasn’t until April 12th, 2012, a few months after my son was born, that I finally got a CT scan. That’s when I heard the word: hydrocephalus. The traumatic brain injury I endured while pregnant had caused it. And while I had pushed through pregnancy, delivery, and early motherhood with undiagnosed brain trauma, the reality finally caught up with me.
For a while, I stayed quiet. I didn’t share what really happened out of fear—fear of judgment, fear of consequences, fear of not being believed. But the silence didn’t stop the surgeries. In 2015, I had my second brain surgery after my shunt failed. That was when it hit me: this wasn’t going away.
Hydrocephalus is lifelong. There is no cure. My VP shunt would need revision after revision. And I would keep waking up on operating tables, learning how to heal all over again.
But I also realized something else.
I couldn’t stay silent anymore.
So I started speaking up—not just for myself, but for anyone who’s been through trauma, who’s had to survive something invisible, and who’s learning to live with a diagnosis that people can’t always see… but that we carry every day.
This is my story. And it’s just the beginning.
Living with Hydrocephalus Doesn’t Mean Life Stops
I won’t sugarcoat it—living with hydrocephalus isn’t easy.
There are days when the headaches creep in out of nowhere, and moments when I have to listen to my body whether I want to or not. But despite it all, I’m still here, living a life full of adventure—just with a few modifications.
Sure, I’ve got restrictions. And honestly, it’s probably for the best because I’ve always been a bit of a thrill-seeker. Rollercoasters? Off-limits. That skydiving bucket list? Crossed off… permanently. But that doesn’t mean I’ve stopped chasing the adrenaline. I’ve just learned to get my heart racing in new ways.
Instead of falling from the sky, I’m conquering fears on the ground—deep water, confined spaces, cave crawling… bring it on. I’ll dive into a swimming hole with friends, explore narrow caverns, and lace up my boots for 20-mile hikes that push me to the edge and remind me I’m still capable of so much.
Hydrocephalus might have changed how I live—but it hasn’t stopped me from living boldly.
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