I was Born with a Defective Brain
So I got it fixed
2014
It started with a headache.
Or, well, not really a headache, per se. I was 19 and hunched over my phone one day, reading. When I raised my head to sit up, I felt an odd pressure sensation behind my eyes. My peripheral vision got a weird, dark distortion. You know how if you half-close your upper eyelid and press lightly on it, a distorted dark circle forms on the opposite side of your vision? It was like that.
I stood up, adjusted my posture, and the pressure went away after a moment. I figured I’d just been sitting too long on my phone, and continued about my day. I was a sophomore in college, and I had shit to do.
Fall 2015
Fast forward to junior year. I had a bad migraine while traveling. I’d been getting migraines with aura since middle school, so I wasn’t immediately concerned, but this time my left arm went a little numb. My PCP suggested it was probably a hemiplegic migraine, but she referred me to a neurologist and sent me for an MRI just to make sure it wasn’t a mini-stroke or something.
I found a neurologist near campus. He looked at the MRI and said, roughly, “No signs of a stroke, so you’re fine. But… hmmm… one of your ventricles is a little swollen, so I want to see you again in a six months.”
I made the follow-up appointment, and then promptly forgot all about it. The practice sent me a $50 no-show fee in the mail. I paid it, embarrassed, and never went back.
Sometimes I wonder how differently my life would have gone if I’d kept that appointment.
2016–2017
Junior year continued, then senior year. I started to struggle with my course load. I was finally studying the advanced courses in my major, I’d wanted to learn this stuff since high school, and I just… couldn’t. Almost nothing stuck. I’d stare at a textbook and want to bang my head into the table for lack of focus.
The weird pressure sensation was happening almost every day, whenever I hunched over my phone. I had also been gaining weight for the last couple of years.
One day, a switch flipped, I said enough was enough, and I put serious effort into tracking calories and cutting out junk food. I lost 20 pounds, and the pressure headaches mostly went away.
I graduated.
2018–2019
I got a job. I moved up to Bethlehem, PA, far away from where I went to college.
I had the same learning struggles with the new job. I’d be bombarded with new information, and nothing was sticking. I’d need 8–10 repetitions before I actually learned anything. In the face of this, I adopted a very aloof attitude toward work and started picking things up on vibes. My performance reviews were exactly as you would expect.
I chalked my issues up to mental health and adjusting to a new city. I bought into all those memes about the “burned-out former gifted kid.” I slowly gained back 10 of the pounds I’d lost. I muddled through.
September 2019
At this point, I’d also been getting sinus infections about three times a year. Small sinuses run in the family, so I went to an ENT to see about getting any structural issues repaired and all the gunk cleaned out.
The ENT sent me for a CT scan. At the follow-up appointment, he said, “Yup. Your sinuses are messed up. Let’s schedule the procedure to clear everything out.”
Since this wasn’t particularly urgent, and I had scheduling conflicts with the first few available dates, I booked it for November 8th—six weeks in the future.
A week later, I got a call from the hospital radiologist. She informed me that they “found something else” on the CT scan, and I needed to come in for an MRI.
…What.
Flummoxed, I hung up and I ignored the phone call.
Another week went by, and I got another phone call—this time from the MRI scheduler. I humored him and scheduled the MRI.
Unrelatedly, I sprained my ankle a few days later and went to my PCP about it.
During the visit, she noticed that my MRI results were back. Reading the report, she got a concerned look on her face and said, “I’m going to refer you to neurosurgery.” She typed in some info and printed out my referral.
I was stunned. “C—can I just lose weight first?” I knew I’d been eating too much lately, and my headaches had returned, but surely I didn’t need to see anyone—
“No, this isn’t that type of problem.”
“But—but I—”
She held out the paper. “This. Is. Not. Optional!”1
I took the paper. I scheduled the appointment.
October 2019
I saw the neurosurgeon about a week later.
After exchanging pleasantries, he held a finger above my face and asked me to look up without moving my head. It hurt to move my eyes up. He asked me if I’d been having any kind of visual symptoms lately, in addition to the pressure headaches. The only thing I could think of were the weird visual distortions from being hunched over and then lifting my head: “...But I have no idea if that’s related.”
He stared at me, deadpan. “That’s literally the textbook symptom for what you have.”
“...Oh.”2
He pulled up my MRI and pointed at a particular slice of my brain. He explained that I had a neural tube defect called aqueductal stenosis. The brain is floating in cerebrospinal fluid, and there are lots of channels and tubes in the brain to allow that fluid to circulate. One of my tubes, instead of being straight, was kinked and narrowed. Birth defect, total accident.3
That narrow spot had accumulated various bits of gunk over the decades, and now, at age 24, it was almost completely blocked. Pressure was building up behind it. My symptoms were those of hydrocephalus—AKA “water on the brain.” Cerebrospinal fluid was forcing itself into my brain matter and impairing neuronal function.
He asked if I’d been struggling to think lately. The last few years suddenly made a lot more sense.
But! Thankfully there was a very simple and straightforward procedure that could fix me.4 They couldn’t access the spot that was clogged, but they could poke a new hole nearby. I wouldn’t even need a shunt; there was a 90% chance the hole would simply form a tunnel of scar tissue and stay open on its own.
My sinus surgery would have to be delayed, but they just so happened to have a slot for that same original date: November 8th.
Within hours after waking up from the procedure, I felt better. The newfound hole in my skull and accompanying incision hurt, but the pressure was gone. Recovery wasn’t exactly easy; they’d still drilled a hole in my skull and jiggered around in my brain, after all. I was off work for the rest of the year, and I didn’t really feel like myself again until February, three months later.5
2025
I’m now writing this on November 8th, 2025. Six years later, I’m doing well. The bore hole did indeed stay open, and I haven’t needed any follow up procedures (knock on wood).
But every year, on November 8th, I remember the day that I got my life back. I remember how valuable civilization is. I think about all the other times I might have died without modern medicine —a childhood infection here, an injury there.
November is the time of Thanksgiving, and now I celebrate it a little early.
This was the same PCP from my other post on microdosing. While I disagreed with her later opinions on GLP-1s, I will always be grateful that she didn’t let me avoid this issue.
The technical term for these visual symptoms is Perinaud Syndrome.
I was born shortly before we started adding folate to the flour supply in the mid-1990s.
Insofar as any brain surgery could be described as “simple.”
Of course, the month after that was March of 2020, so uh... yeah...
So glad to hear you are doing better.
Also try going vegan if you aren’t already? Whole-food plant based diets sometimes help with random health issues and besides it’s the only ethical diet. 🙏