How To Find Out You Have An Arachnoid Cyst

My story about discovering that I had an Arachnoid cyst on the birding trip that changed my life!

I never made it to Kidepo National Park.

That was the whole point of the trip — a birding club excursion up to Northern Uganda, chasing species I’d never seen before. Kidepo was the destination.

But my body had other plans, and it decided to tell me so in the most Ugandan way possible: on a hike, in the rain, at 2,050 meters above sea level, at a place called Kapkwai Forest.

I didn’t get the memo until much later. At the time, it just felt like a really long, really good day.

A Perfectly Normal Day (Until It Wasn’t)

We started the morning birding up at Kapkwai Forest, up in the hills of Kapchorwa. Birded right up until midday, when the rain chased us back down to base for lunch.

Nothing unusual so far. This is what a birding trip is supposed to look like.

After lunch, we set off again, this time hiking down to the bottom of Sipi Falls, then back up to the top, then back to base overlooking the falls. A full day of legs and lungs and binoculars.

Somewhere on the way down to the bottom of the falls, I twisted my ankle. Nothing dramatic — just enough to give me a limp for the rest of the hike.

I didn’t think much of it. When you’re out birding, a twisted ankle is just part of the tax you pay for a good day outdoors.

By the time we got back to base, I had a headache. A friend handed me a painkiller. I was tired, sweaty, limping, and mostly just wanted a shower before dinner. Completely ordinary end to a long day. Or so I thought.

The Part I Don’t Remember

Here’s where the story gets strange, because I have to tell it the way I actually experienced it — which is: not fully.

I remember another friend walking me down the stairs to the bathroom, holding my lamp in one hand and me in the other, because of my limp. She left me there, promising to come back for me. There was a guy already showering. I asked him if the water was warm. He said no. I didn’t care -I just wanted to get clean and get to dinner.

I don’t remember walking into that bathroom. I don’t remember closing the wooden shutter behind me.

The next thing I remember is waking up on a hospital bed, on oxygen, surrounded by my birding club friends.

And then, somehow, a friend from home in Entebbe was there too — nowhere near the trip, hours and hours away, but there in the hospital room with me. I found out later he had driven through the entire night to reach me, planning to pick me up and take me home himself, hospital stop included.

I don’t know exactly what happened in that bathroom, or how long I was gone before someone found me. What I do know is that whatever happened, it was serious enough to end my trip to Kidepo before it ever really began.

“It’s Just a Discovery”

When I was stable enough to be released the next morning, my first instinct was to keep going — to continue on to Kidepo like nothing had happened (because I felt fine). I was gently, firmly told that was not a good idea. I agreed and bid my birding club friends goodbye.

My friend drove me back home instead, and along the way, took me for a CT scan. That scan gave me an answer I wasn’t expecting: an Arachnoid Cyst so large it had pushed my brain to the left side of my skull.

My Reaction After Learning I Had An Arachnoid Cyst?

I want to be honest about something here, because I think people expect a certain reaction to news like that, and I didn’t have it. I wasn’t shocked. I wasn’t scared. To me, in that moment, it genuinely just felt like a discovery. Like finding out a fact about myself I hadn’t known before. I went home that day with my brain scan in hand, oddly calm about the whole thing.

A few days later, I saw my first neurosurgeon. He ordered an MRI — a machine I have grown to genuinely despise, for the record — and it confirmed what the CT scan had already shown.

The cyst was congenital. It had been there since childhood, quietly growing alongside me, and had finally pushed things far enough that my body had to say something. (If you want the fuller picture of what this device actually is and how it works, I wrote about that in My New Brain Shunt Life.) That headache,(and so many other unexplained headaches I had experienced before) that missing chunk of memory in the bathroom — the neurosurgeon told me I’d actually suffered a mini stroke.

Naturally, I asked what the plan was. He gave me two options: wait and observe, or operate.

“Why would we wait and observe,” I asked, “just to see if I get a major stroke instead?”

He agreed, and recommended surgery. A craniotomy, he called it. In his words, they would open my skull, drain the fluid, and re-roof it.

Re-roof it. Like a house.

I laughed. I actually asked him if he meant re-roof me like a house. He didn’t laugh back, which somehow made it funnier to me. But I went home that day with a diagnosis, a plan, and — apparently — a roofing appointment for my own skull.

The Night Before The Arachnoid Cyst Surgery

I had surgery appoint scheduled: admission on May 13, operation on May 14.

I left home with my best friend and the friend who’d driven through the night for me, all headed to the hospital together.

On the way, I received a last minute call — not to go to the hospital I’d originally planned for, but to a different one instead. I trusted the people around me and went along with it. We got there and waited for all the preparations.

Early morning on May 14, they told me they’d come for me at 4:00 AM.

4:00 AM came. Nothing happened.

My best friend was right there with me, and I remember the two of us getting quietly nervous, neither one of us saying it out loud. Just sitting with it.

Then, at 5:50 AM, they came for me in a rush — practically swept me onto a wheelchair for what turned out to be a 30-second ride to the operating theater. I told them I could walk myself. They told me no.

It was right there, at the entrance to the theater, that I felt nervous for the very first time since the whole thing began. Not during the diagnosis. Not during the “re-roof it” conversation. Right there, at the door.

It suddenly hit me: this was actually happening.

I gave myself a quick talking-to. It had to happen. And I walked in or rather, was wheeled in – anyway.

Not An Arachnoid Cyst Surgery But VP Shunt Surgery!

Four to five hours later, I opened my eyes and I only had a big plaster on the right side of my head. Not a full bandage! It was not a craniotomy but a VP Shunt surgery!

I got out the hospital on May 17 and went home.

Looking Back

I never made it to Kidepo. But I made it home, twice — once from a mountain in Kapchorwa, and once from a surgery I didn’t fully see coming until I was staring at the theater doors.

Here’s what I keep coming back to: I wasn’t scared of the diagnosis. I wasn’t scared of the surgery, not really, not until those last thirty seconds. What actually shook me wasn’t the Arachnoid Cyst, or the scan, or even the word “craniotomy.” It was that one small, human moment of realizing something big was about to happen to my body, right before it did.

If there’s a lesson in all of this, I think it’s that you can be remarkably calm about the big, scary-sounding things, and still get hit sideways by a wheelchair ride that only takes thirty seconds. Both reactions are normal. Both are okay.

I still haven’t been to Kidepo. But I’m still here to go one day — brain intact, freshly “re-roofed,” and still very much chasing birds. (Recovery brought its own strange adjustments too — like figuring out how to sleep again, which I wrote about in Sleeping With a VP Shunt.)

Have you ever gotten life-changing news in the middle of doing something completely ordinary? I’d love to hear about it in the comments.