Well, the calendar has spoken. My next MRI scan for this 19 x 12 x 12 mm acoustic neuroma is officially booked. Another check-in with the freeloading jellybean in my head—a bit of a drama queen, but one that’s been remarkably quiet lately.
This will be scan number three since the diagnosis, and so far, it’s been the same headline: no growth. I’ve honestly started to think this tumour just wants a free ride, sitting around quietly while I do all the worrying.
Still, when the scan date lands, something always shifts. It’s not panic—just a subtle change in mental background noise. You start wondering, What if it’s grown a bit? What if the conversation changes this time?
Living with an acoustic neuroma teaches you to become a reluctant expert in neuro-otology. You learn all the lingo—vestibular schwannoma, radiosurgery, retrosigmoid, cochlear nerve integrity—and you start carrying all this invisible knowledge around with you. Not because you wanted to, but because this is your life now. And when you’re on the “watch and wait” pathway, it’s far from passive. It’s strategic patience. A constant mental balancing act between vigilance and just trying to get on with your day.
At 39, time is on my side. There’s no brainstem pressure, no facial symptoms, no balance issues. Just the ever-reliable duet of hearing loss and 24/7 tinnitus, which I manage with a hearing aid and a good sense of humour. The tumour, for all its quirks, has been behaving.
So for now, I stay in wait-and-watch mode—not because I’m avoiding treatment, but because this is still the smartest option. If it starts growing or misbehaving, we’ll deal with it. But why jump the gun?
Every scan day follows a familiar ritual. Check in. Lie down. Pop on headphones (pointless, but polite). Then it’s 30 minutes of loud clunking and humming inside the MRI tunnel while you try not to move or sneeze or think about the fact that you’re essentially inside a very expensive washing machine.
After that comes the real challenge—the waiting. That in-between zone where you know your head’s just been imaged in extraordinary detail, but nobody’s going to tell you anything yet. So you get on with your day, pretending not to obsessively refresh your NHS app or email.
If the results come back unchanged again, it’s a win. A high-five to my inner biology. But if there’s a bit of growth—just enough to raise a few eyebrows—I’ll take a closer look at my options.
Radiosurgery like Gamma Knife or CyberKnife is still very much on the table. It’s a single-day outpatient treatment, non-invasive, and tailored for tumours like mine—medium-sized, behaving but showing signs of ambition. But once you go down that road, it’s a one-way door. So I want to be sure. For now, I’m not in a rush.
And surgery? That’s the nuclear option. Only if things start getting serious, fast.
So, life continues. I work, I stay active, I paddleboard and run and umpire hockey. I navigate loud social settings with selective nodding, hoping my hearing aid catches the important bits. I try not to let the tinnitus run the show.
In the quieter moments, the tumour is there—not as fear, but as awareness. Like a bookmark in a book I didn’t choose, but now have to finish reading.
Here’s hoping the next chapter is another uneventful one.
