The Condition Nobody Talks About

I didn't understand that verse until I understood what my brain had been doing my whole life.

What Is Chiari Malformation

Your skull is like a sink. At the bottom of that sink is a drain — it's called the foramen magnum — and that's where your brain and spinal cord connect. Cerebrospinal fluid is supposed to flow freely through that drain in both directions.^[5] In Chiari malformation that drain is partially blocked because brain tissue — specifically the cerebellar tonsils — has herniated down through the opening and into the spinal canal where it doesn't belong.^[1][4]

In my case the tonsils were herniated between 12 and 15 millimeters. My neurosurgeon estimated 14. He said that number matters less than what it's actually doing. And what it was doing was pressing directly on my brainstem.

Why The Brainstem Matters

Your brainstem controls the functions your body runs automatically in the background. Swallowing. Balance. Coordination. Breathing. Heart rate. You don't think about these things. They just happen. Until they don't.

When your brainstem is compressed those functions start to fail. Not all at once. Not obviously. Gradually. In ways that are easy to miss or explain away as something else entirely.

Balance. Swallowing. Breathing. Heart rate. That's what was being compressed. That's what I was compensating for my whole life without knowing it.

What It Looked Like In My Life

I was sent to speech therapy as a kid. Written off as a slow developer. My balance was always terrible but nobody could explain why. I failed a field sobriety test in the military stone cold sober — blew zeros — because I couldn't balance well enough to pass it. I pushed through military physical training that should have been impossible given what was happening inside my skull. I built a career in a cardiovascular ICU and a neuro trauma bay while my own brainstem was being compressed.

Three times recently I woke up and my legs didn't work. Not weak. Gone. I made it to the bathroom like a drunk run. Couldn't keep myself upright. My buddy had to help me and I didn't want to let him.

Then one morning I couldn't swallow. That was the line.

Why It Gets Missed

Chiari gets misdiagnosed constantly. Published research documents an average diagnostic delay of a decade from first symptoms to confirmed diagnosis — with delays ranging from two to twenty-five years.^[2] Here's what it got attributed to in my life — clumsiness, balance issues, a slow developer, anxiety, and things that just seemed like quirks of who I was. None of it was wrong exactly. All of it was incomplete.

The problem is that Chiari is invisible from the outside. You can look completely fine and be severely affected. I worked in critical care. I served in the military. Nobody knew. Including me.

The neurological compensation your brain performs over time — rewiring itself around the damage just to keep you functional — is called neuroplasticity.^[3] My brain did this for decades. It's remarkable from a clinical standpoint. It also means the condition masked itself well enough that I didn't get diagnosed until the compensation started failing.

That's neuroplasticity. That's also faith. Turns out they're not that different.

What The Surgery Actually Does

The procedure is called a suboccipital craniectomy with C1 laminectomy and duraplasty.^[1] That's a mouthful. Here's what it actually means.

The surgeon removes two to three centimeters of bone at the base of the skull. Then the back of the C1 vertebra. Then they open the dura — the membrane that holds your spinal fluid — and sew in a patch to expand the space. The patch is made from pericranium which is tissue from your own scalp. Your body doesn't reject it and it's the least likely material to get infected.

The cerebellar tonsils get cauterized and shrunk. The tonsils themselves are functional — they're involved in coordination and movement.^[6] The problem isn't what they are; it's where they've ended up. Shrinking them gets them out of the way and takes the pressure off the brainstem.

The result is more space. The tonsils float back. The brainstem decompresses. The fluid flows the way it's supposed to. My neurosurgeon told me — all of this would be nice free white space. That's what we're building toward. February 26th.

Sources

Medical disclaimer: This page shares my personal experience with Chiari malformation. It is not medical advice. Please consult a qualified neurosurgeon for diagnosis and treatment guidance.