.png)
%20(2).png)
Hydrocephalus
Hydrocephalus is a neurological condition that affects how cerebrospinal fluid flows through the brain, leading to increased pressure that can impact physical, cognitive, and emotional health. It can be congenital or acquired, diagnosed at any age, and often looks different from person to person — which is why it’s frequently misunderstood or overlooked.
For many, living with hydrocephalus means navigating surgeries, ongoing medical care, and symptoms that aren’t always visible to the outside world. It’s a condition that requires resilience, advocacy, and constant adaptation — not just for those diagnosed, but for their families and support systems as well.
Before sharing my personal experience, it’s important to understand the scope of hydrocephalus and how many lives it touches every day.
36K
Shunt surgeries annually.
50%
Shunt failure within 2 years.
1M
People affected.
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.
-
Congenital (present at birth)
-
Acquired (develops after birth)
-
Communicating vs. non-communicating/obstructive
-
Normal Pressure Hydrocephalus (older adults)
-
Compensated/arrested and external hydrocephalus
-
Symptoms vary by age:
-
In infants: rapid head growth, bulging soft spot, irritability.
-
In children: headaches, nausea, vision problems.
-
In adults: gait disturbances, cognitive decline, urinary incontinence (especially in normal pressure hydrocephalus)
-
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.
My Hydrocephalus Journey
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.
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.
.png)
Do you have Hydrocephalus or care for someone who does?
Share your/their story with the Hydrocephalus Association. Your voice matters more than you know. Each story shared raises awareness and spreads the word about our condition.