How did I find out (part 1/3) - Early signs

If you're interested in how I found out that I have this tumor in my head—called vestibular schwannoma, aka acoustic neuroma—here’s the full story. Actually, it’s so “full” that I had to split it into three parts. I really hope it sheds some light on how these things are usually discovered, and what tends to happen before someone actually gets their first diagnosis. Of course, it differs from case to case—but this is how it went for me. 

When people hear about my diagnosis, the one question that most frequently pops up is: “But how did you even find out that you have this thing in your head?” And it's usually hard to explain in a short format appropriate for today’s fast-paced lifestyle. The answer, in my case, can’t be boiled down to just one event or symptom. Well, I could pick one of the most obvious ones and throw that at them. But it wouldn’t have any context, and even worse, it would be just a pixel of the whole picture. So if you are truly interested in the whole “how did I find out” story, here it is.

Vestibular Schwannomas are slow-growing masses, so who knows when the first Schwann cell went haywire in my head. Based on the current size (~2 cm) and the statistical growth rate of these things (1–2 mm per year), it could’ve been decades ago—maybe in high school or even way back in middle school. Who knows. It’s not even important to know. What is important is that it happened, and it’s there. Now let me think about when weird things started to pile up.

When I think back, the first symptom I can link to my Vestibular Schwannoma probably popped up approximately three years before diagnosis. It was likely early or mid-2021, a few months after I got over COVID-19, when the most popular topic of the year was what side effects people had from it. At that time, I sometimes started to hear very quiet and barely noticeable low-pitched sounds in my head. It was some sort of weird buzzing or roaring—like an excavator digging in the distance, or the sound of a big ship roaring with its powerful diesel engines on a distant horizon. Occasionally, I still hear this sound. But now it can be a little more intense, and I know what causes it. Back then, though, even though it was a bit strange to me, I didn’t pay much attention to it. It just became a handy thing to mention when joking with my friends about our COVID-19 legacy.

This sound in my head was rare, maybe happening once or twice a month and lasting about half an hour each time over a period of six months. I’d only hear it when I was calm, in a quiet environment, fully present, and paying attention to the sensory inputs my body was sending to my brain. Even then, I’d ask myself whether the sound was coming from outside or inside my head. Because when I firmly covered my ears, all I could hear was the sound (I assume) my body produces—blood circulating, the pulsating sound of my heartbeat, and other subtle internal noises. I didn’t think it was important enough to bother anyone about, especially since it didn’t really bother me. After that, I think there was a period where the sound disappeared for a while.

The next symptom—also tinnitus, but this time a high-pitched ringing in my head—caught my attention, I think, at the end of November 2022. I remember it because I was working on a control circuit for our home central heating system, trying to modernize it, and I kept hearing a high-pitched sound that I couldn’t locate. After eliminating the possibility that the sound was coming from the board or my computer, I quickly realized it was all in my head. At first, it wasn’t loud. I could barely hear it, and it wasn’t there all the time. But after a couple of months, that high-pitched sound in the center of my head slowly became an everyday companion. Because I’d only hear it when I was calm and in a quiet environment—mostly when I lay down to sleep at night—I didn’t pay much attention to it. It didn’t really bother me. And after all, my granddad had similar high-pitched tinnitus (which is quite common among elderly people), so I just told myself: “It has to be in my genes. I just got it a little early. Well, fuck it—I’ll have to deal with it.” Joke’s on me. I was wrong. It wasn’t because I turned thirty.

Then, in the summer of 2023, during holidays at the seaside, when resting after lunch or lying in bed before sleep, the low buzzing tinnitus came back. Interestingly, it was only present when I was at the seaside. Actually, it’s still more common when I go there. Maybe air pressure has something to do with it. I don’t know how else to explain this phenomenon to myself. Anyway, after the holidays, back at home, the sound was maybe present for a day or two, and then it disappeared. But by this time, the high-pitched tinnitus was constantly present and becoming a bit more noticeable—though still nothing that set off any alarms.

And so it was for quite some time. The next thing I remember when thinking back—though it didn’t seem like much at the time—was a period of strange brain fog in mid-2024. I don’t know if it was related to the tumor, but looking back now, it very well could be. Some symptoms these days do include things like this. It probably lasted a week or two and maybe happened on two separate occasions.

Let that be enough for one post – I will continue the story in the next one. Ok? ...So, the next post, where I finally start to act, is—When things got serious.