It started quietly. Migraines that wouldn't quit. Dizziness. A strange pins-and-needles feeling that came and went. Moments where I simply couldn't wake up — deep, strange sleeps that weren't restful, they were just gone.

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I was a teenager. I'd had a traumatic brain injury years before — a head injury that felt like old news by then. Everyone around me chalked the symptoms up to stress. Hormones. Being young. And then I got pregnant with my son, and every weird thing happening in my body got an even easier excuse.

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I wasn't being dramatic. My brain was in danger. Nobody knew yet.

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Three months after giving birth, the symptoms were worse. Not baby-blues worse. Neurologically worse. Something was seriously wrong, and I finally pushed hard enough to get a CT scan.

I went in for that scan expecting answers. Maybe something minor. A medication to manage things. I was not prepared for what happened next.

That same day, I was diagnosed with acquired hydrocephalus — a buildup of cerebrospinal fluid on the brain, caused by a blockage from my earlier traumatic brain injury. I was rushed directly into emergency surgery to have a ventriculoperitoneal (VP) shunt placed. A follow-up MRI also revealed Chiari Malformation Type 1.

Since that first surgery, I've had seven shunt revisions. Each one comes with its own recovery, its own setbacks, and its own version of starting over. I've learned something most people outside this community don't understand: a shunt malfunction doesn't always look like a medical emergency from the outside.

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Sometimes it looks like symptoms that "could be anything." A headache that's a little worse than usual. Fatigue that's hard to distinguish from ordinary tiredness. Nausea that gets attributed to stress. Meanwhile, the pressure is building. The shunt isn't doing its job. And if you happen to have a doctor — or a neurosurgeon — who isn't listening closely, those two years can slip by.

I know because that happened to me.

This is the part of my story I feel the most urgency to tell — because I know I'm not the only one it's happened to.

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For two years, I was declining. Symptoms that didn't add up. Medical visits that led nowhere. Everything that could be checked, was checked — and came back fine. I was told it wasn't the shunt. I was told there was no reason to go back in surgically. My neurosurgeon refused.

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But it was the shunt. It was damaged. And while that went undetected and untreated, my brain paid the price.

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One of the hardest moments in that period came from something that might sound small: my depth perception had shifted slightly — a subtle symptom I hadn't fully recognized as a symptom yet. I accidentally hit my head directly where my shunt was placed. That led to another brain bleed, a second traumatic brain injury, and a new diagnosis: epilepsy, specifically partial complex seizures.

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The epilepsy was caused by the neurological damage from the undetected shunt problem. Two years of being told everything was fine. It wasn't fine.

In 2019, following another round of surgeries, I ended up in a wheelchair. I had to relearn how to walk. Not in the metaphorical sense — literally. Daily activities I had never thought twice about had to be relearned from the beginning. It was one of the hardest, most painful, most humbling things I have ever been through.

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I was placed on disability. And for a while, I genuinely felt lost. Like the version of my life I had imagined wasn't coming back. Like I was watching it from a distance.

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But something shifted during that time, too. When you are forced to slow down that completely — when you literally cannot move at the pace the world expects of you — you start to see things differently. I found perspective I didn't know I needed.

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Living with hydrocephalus taught me that invisible illness is real, that healing isn't linear, and that strength doesn't have to look graceful. Sometimes strength looks like lying in a hospital bed for the seventh time and deciding you're going to try again anyway.

Hiking was always my thing. Before all of this, before surgeries and shunts and wheelchairs, being outdoors was where I felt most like myself. Losing that felt like losing a piece of who I was.

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So when I got back on my feet — and I mean that literally, one careful step at a time in physical therapy — getting back on a trail became a goal. Not because I had to prove something to anyone else. Because I needed to prove something to myself.

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I completed my first Mammoth March — a 20-mile hike. After being told I might not walk normally again. After a wheelchair, multiple surgeries, a shunt that failed for two years while doctors told me everything was fine. Twenty miles.

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I've been seizure-free for six years. I still have symptoms. I still check in regularly with my neurology team. I still live carefully and take things a bit slower than I used to. But I am out here. Hiking. Traveling. Living out loud.

I also recently got married, I'm raising my incredible son, and I work as a marketing professional focused on web design and social media. The diagnosis didn't stop my life. It redirected it.

I built this space because when I was in the thick of it — newly diagnosed, scared, declining, fighting to be heard — I needed someone who had been there.

 

Not a brochure. Not a clinical summary. A person.

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So that's what I'm trying to be.

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I'm not a doctor. I'm not a medical professional of any kind. Everything here is my lived experience and my opinion — please always consult your care team for your own health decisions. What I am is someone who has been through it, who kept pushing when she was told to stop, and who came out the other side with something to say.

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If you found this page because you're scared, because someone you love just got diagnosed, because you've been told your shunt is fine and you don't believe it — you are not alone. You are not dramatic. Keep going.