Finally, the big mystery is revealed—the diagnosis is in: vestibular schwannoma, also known as acoustic neuroma. A lovely, not-so-small tumor in my head. And that’s how I finally found out...
My appointment for the MRI
was on December 23rd (2024). Because I chose the first available slot, I had to
make a compromise—I had to drive an hour and a half to get there. Well, of
course, my girlfriend didn’t allow me to drive because of my symptoms. So, all
thanks to her, she drove us there. The MRI scan went really well. The personnel
gave me headphones with calming music, I laid down on the MRI bed, and through
the small mirror in the head frame, I could see a television playing relaxing
videos of nature. That wasn’t my first encounter with an MRI procedure, so I
knew what to expect. The MRI scan was done without contrast dye (as my doctor
stated in his referral) and was completed in something like 15 to 20 minutes.
This MRI provider had a
great system for delivering medical images. Not even half an hour had passed
after the procedure when I got a text message with access codes to view my MRI
scan images. My girlfriend and I weren’t even on our way back home yet. We were
heading to the grocery store to grab some quick snacks before hitting the highway.
I was very nervous. What would the MRI scans reveal? The uncertainty was
killing me. Normally, the procedure is that the MRI is done by a general
radiologist, and then, usually within a few days, a specialist radiologist
writes an opinion—a report of their findings. So I knew that all I had now were
images without any explanation. But I couldn’t wait. Not even until we got
home. I had to take a look myself. So, I downloaded the images to my phone.
Installed a mobile app for viewing them. I held my breath and started scrolling
through those images showing slices of my head, from my neck to the top. I’m no
medical expert, and the knowledge I had from high school biology was not fresh.
I didn’t know what to look for, so my best strategy was to compare the left
side of my head to the right side and vice versa. At first, everything seemed
fine to me. I even said, “I think everything looks fine,” to my girlfriend. But
then I did one more sweep through the sequence. And there it was! A gray
circular area on the right side of my head that wasn’t on the left side. I
looked at it, not knowing what it was, whether it belonged there, or whether it
was serious. I just saw that the internals of the right side of my head were
not the same as the left. When I looked closely and thought about it for a few
seconds, I quickly connected the dots… “This shouldn’t be there.” It was a very
scary moment. Questions kept popping into my head, but I didn’t have even the
slightest clue what the answers could be. All I knew was that there was
something in my head that didn’t belong there. Of course, you first think of
the worst-case scenario, and you come to a dark conclusion—based on movies
you’ve seen and stories you’ve heard—that your life could be over in months. It
shook me. And I was probably pale as if I had seen a ghost.
This was the worst possible
time to get such news—the holiday season. It was basically the last full week
of the year, with only three working days. So probably every specialized
radiologist in the country was taking their well-deserved time off, and there
was no hope that written MRI reports would come in before January 3rd. That
meant spending at least a week and a half on edge, not knowing what was
happening to me or what I could even do if symptoms got worse. The symptoms
were already very worrying to me, and from my perspective, they came out of
nowhere and were ramping up fast. So, for me, complications over Christmas or
New Year’s wouldn’t be ideal. And don’t even mention the anxiety of not
knowing. So my partner and I decided that I would, very early the next day (the
morning of December 24th), go unannounced to the clinic and ask if I could have
five minutes with my doctor before his first appointment—just to determine how
serious the situation was and whether there was a need to act immediately. The
next day, I was in the waiting room before any other patient or medical staff
had even arrived. After some nervous minutes, the nurses who check in patients
for my doctor came in for their shift. Even though the rule was clear— “Only
patients with appointments. No exceptions!”—I tried to explain my situation, my
concerns, and my fears. But I failed. I tried, but it didn’t work. All I got
was a suggestion to send a written message to my doctor through their medical portal,
and maybe, if he had time, he would respond. Well, better than nothing. I went
straight home, sat behind the computer, selected a few MRI images, marked the
suspicious mass with measurements, and sent them to him, kindly asking if he
could shed some light on it. A few hours later, I got a call. It was my doctor.
He was very kind and explained that he decided to call me in person. He
reassured me that although there was something that shouldn’t be there, there
was no need to panic—it was very unlikely that it would cause serious
complications in the next week or two. He said it could be something like a
harmless cyst, calcification, or something similar—but we’d have to wait for
the radiologist’s report to determine the next steps. For now, I should relax
and wait through the holidays, because there was no real life-threatening
danger. He didn’t mention that this could be a Schwannoma. But all that
mattered was that he calmed me down, and the possibility of an immediate
life-threatening situation was off the table.
This holiday season was
very stressful for me. Of course, I didn’t just sit and wait. I desperately
wanted to figure out what was in my head. All I had was the internet, and I was
using it at 120% of my ability. Quite quickly, I stumbled on a condition called
Acoustic Neuroma, also known as Vestibular Schwannoma, and my MRI images
aligned with those on the internet quite well. There were other possibilities
too—some sounded better, some much worse—but Vestibular Schwannoma was my best
bet. And so, my holidays turned into a time of intensive research into
plausible treatments for Vestibular Schwannoma, aka Acoustic Neuroma.
On January 2nd, at 22:20, I
got a message saying that the MRI report was available on the MRI provider’s
web portal. I didn’t open it right away and instead decided I would wait until
morning. In the morning, my partner and I downloaded the report and read it. It
stated: Vestibular Schwannoma, with meningioma as a plausible differential
diagnosis, and a recommendation for another MRI with contrast dye—which was
something I had already assumed and hoped for. It was a sort of relief for us.
Now we at least had a confirmation of what it probably was. It wasn’t a solid
confirmation yet, but it was enough. So, for me, the early morning of January
3rd, 2025, is the moment I found out that I have a tumor called Vestibular
Schwannoma growing on the right side of my head. Fancy, right?
Next, I had to wait until
January 6th for my doctor to come back to work. He wrote me a referral for an
MRI with contrast dye, and the scan—done on January 17th—confirmed the initial
diagnosis. Everything that followed… I’ll get into in future posts.
Huh. That three-parter turned
out way longer than I planned. I have to admit—I lost myself a little bit while
writing this. But in a good way. I really hope you found it interesting, and
I’m looking forward to seeing you in the next blog post.