Hex Does the Blog Thing
March 27, 2026: "Benign"
I have a brain tumour.
This is a log of both the medical journey I went through to determine this, and the physical and mental struggles I dealt with and continue to deal with in the month leading up to surgery.
The Year-Long Diagnosis
In March of 2025, I got a weird bout of vertigo. Not just a single instance of it, but a general increased dizziness and motion sensitivity, for a couple of weeks. I first noticed it while playing a new first person game with friends. I’m already prone to motion sickness from cars and certain games, so I figured it was just something about this particular game’s camera and movement. But I’d also get dizzy when lying in bed. Not when I first lay down, not when I stood up – after a few minutes of being horizontal, or when I rolled over. It persisted beyond the game, happening for seconds or minutes at a time throughout the day.
I reluctantly stopped playing the game altogether. I tried my anti nausea wristbands, dramamine, herbal patches, and the Epley manoeuvre. I couldn’t tell if anything was really working. I happened to have my annual physical about a week later, so I mentioned it to my PCP. She wasn’t sure what it could be since BPPV seemed to be out of the running. I had bloodwork done and everything seemed fine. It kind of stopped happening for a couple of weeks so I wrote it off as a weird blip and went on with my life.
It came back in June. I had a more thorough evaluation with another doctor, which also resulted in a lack of real answers. It persisted for a month or two, and eventually resolved without making any significant changes.
Then, in mid September, I started noticing that the muscles on the right side of my face seemed weaker than the left. My smile was lopsided, talking felt weird, and my eye didn't really close properly. Now, I don’t know about you, but my first association with that kind of symptom is a stroke. But I figured I’d know if I’d had a stroke? I'm not even out of the "young adult" age bracket, I've never had a history of similar or related issues, and there were no other symptoms. Unfortunately I hold a lot of internalized shame surrounding health (a tendency to assume anything that’s gone wrong with me is “my fault” due to bad habits or lack of discipline) and I was anxious because I was pretty sure this had been happening for a few days, but I hadn’t properly noticed until just then… and I wasn’t sure if it would just go away or not… and there was a lot of Life Stuff happening at the same time… So it was two weeks before I told my wife.
She took me to the ER, which to my great surprise only took about an hour of waiting. They did some physical tests — checking my visual tracking (fine), numbness (none), muscle symmetry (normal), asking about hearing and taste (unimpacted), etc. They concluded it was probably Bell’s Palsy – I was missing a couple of symptoms, but it’s the most common explanation for it – and gave me a week-long course of meds. That didn’t do anything, so I got referred to an ENT.
The appointment wasn’t until October, but when I met the doctor he was immediately way more reassuring than any of the other doctors I’d gone to. He did the same physical check, plus checking facial movements, and talked me through the best case scenario – everything clears up and life goes on as normal – and the worst case – I lose most or all movement in those facial muscles and maybe get some surgeries done to improve eye closure and facial symmetry. (Apparently they can put a tiny weight in your eyelid to help it close. They'd better knock me out real good for that one.)
He scheduled me for an MRI, which didn’t happen until January. Also, it was at 9pm in the evening for some ungodly reason, on the exact day and time the new FFXIV raid tier dropped and I was supposed to go in with my new team. I was so damn upset about that. I was super excited for the tier, but I didn't want to hold up seven other people, but I couldn't cancel this very important appointment that had been booked months in advance. I told the group to start without me and helped them find someone to sub in. Yes, I was sad, but it wasn't anyone's fault and it couldn't be helped. But ultimately they decided to wait until the next day. This was very, very hard for me to accept, but a gesture I still cherish and think about often whenever another friend (often some of the same people who were so kind to me) is having trouble accepting others sacrificing something for them.
While I laid as still as possible in the big loud beep machine, they gave me headphones and played disco music and Losing My Religion. In the interim, the paralysis got worse – which is “unusual” for Bell’s. The MRI showed some minor activation in the right side of my brain (it's weird to think about your brain looking at a picture of itself!), so we escalated to a CT scan and an audiology test, plus an ophthalmology test for safety because I randomly happened to burst a blood vessel in the trouble eye.
Also I started getting an inner ear muscle twitch, which I still have. Sometimes it’s a low hum or rumble. Sometimes it both sounds and feels like a motorcycle revving right inside my ear. Sometimes it's constant; other times it's only when I move any muscles or whenever I breathe in. It sometimes impacts my hearing.
The audiogram went fine; there’s a noticeable dip in the precise pitch my tinnitus is at, but it’s still well within normal hearing ranges. This was honestly probably the most interesting part of all the tests and scans I’ve had done. They played audio of words that I had to repeat, then beeps that slowly got louder and I said when I could hear them. I felt like I did Good At Audio Test, which is normal to want and possible to achieve.
The CT scan confirmed what the MRI caught: something unnatural in the right side of my brain. I met with an otolayrntologist, who confirmed the scans had picked up a lesion in the area where my facial nerves are.
A brain tumour.
She explained that it was benign – which is to say, non-cancerous – and that it could be removed with neurosurgery, along with a biopsy to analyze the tumour. She confirmed what the ENT said about probably not recovering much or any facial movement. She told me they could try to repair the nerve with a graft of a nerve in my left ankle. She went over the possible risks of surgery – low but not none: infection, wounds reopening, cerebral fluid leakage, seizures, paralysis on the left side of my body, impacted speech and language, stroke, loss of hearing or taste, dizziness, death. Y'know. Normal stuff.
Most of what she told me was already pretty obvious from the test results and other appointments I had. But something about having it all laid out there, especially the possible complications, was like the nail in the coffin. I thanked her, went to the hospital lobby, found a quiet corner, and cried for a good bit. I really hate drawing attention to myself, especially in public, but I figured, it’s a hospital, people probably cry here all the time. I don’t think I could’ve stopped myself if I’d tried, anyway.
My ophthalmology appointment was supposed to be that afternoon, in the same hospital, but not for another two hours. But I couldn’t make myself stay. I skipped out and went home. (My eye cleared up just fine after a few days.)
The next day I met the neurosurgeon with my wife. He essentially confirmed everything the otolayrntologist said. This didn’t really hit emotionally at all. I guess I already knew, and it didn’t change anything. Then I proceeded to have to wait for weeks to get an actual date for the surgery, because apparently he never wrote any post-appointment note that that had to be scheduled and the neurosurgery scheduling assistant couldn’t do anything more than send him a note to follow up. And then there had to be a time when both neurosurgery and otolaryngology were available because they’re both going to be involved in the procedure. But finally I got a date: April 15th.
The Mental Strain
Facial palsy is unpleasant to live with. I don’t go outside much, so thankfully I don’t have to deal too much with strangers. Masking helps. My face looks mostly normal until I smile or talk. Talking is hard, plosives in particular. I feel the imbalance the most distinctly when I laugh. I have to manoeuvre cups and bottles and straws differently when I drink, and eating is a little awkward too. Rinsing out my mouth after brushing my teeth just straight up sucks. I have to hold the right side of my mouth closed with my fingers to spit.
Also, my right eye doesn’t close properly of its own accord, and often feels dry and irritated. There’s eye drops and gel and a dinky plastic eyepatch which is called a “moisture chamber.” I still flinch every time I do the eye drops. The gel is longer lasting, but completely blurs my vision in that eye for hours. The eyepatch is a little better, but wearing it kinda sucks, especially under my glasses!
Along with all that and the ear tremor, daily life is definitely impacted. But the rest of my body is still fully mobile and there’s no numbness or pain, so on the whole I “feel” fairly normal. It’s become integrated in my routine. Sometimes I catch myself remembering that, uh, I have a brain tumour? That’s kind of a big deal? But it doesn’t feel like a big deal.
This is both a blessing and a curse. It’s nice to not be constantly fretting about it and being sad about my condition. But there’s also a lot of unconscious stress that I don’t always notice or acknowledge, and I expect it’s playing a bigger role in my life than I’m aware of. I won’t truly know what it feels like not to have it until it goes away – if it goes away. For all I know the surgery won’t actually improve anything, just stop it from getting worse. I want this thing gone, but I don’t have high hopes of it making my life better. At the very least it seems fairly routine as far as brain surgery goes. None of the doctors seemed concerned about it being particularly risky or difficult, but, y’know, it’s still brain surgery.
I’m trying not to think too hard about the extremes in either direction. It hits hard once in a while. I got really anxious the other day and started spiralling about what will happen if I die or, worse, become incapacitated in some form. I’m not particularly spiritual and don’t believe in an afterlife, so to me, death only means I won’t be able to do fun stuff anymore. But I won’t even be conscious to know that, and the thought of leaving my friends and family to deal with the aftermath is deeply saddening and I don’t want them to have to go through that. On the other hand, if something goes wrong and I lose significant amounts of physical or mental capacity, it’s going to be a lot harder to deal with. I haven’t really let myself fall too deeply into that rabbit hole… yet. I still have a few weeks to go.
Telling people isn't altogether too difficult. The fact "I have a brain tumour that makes half my face not work" is, at its baseline, something I can say without a problem. Accepting people's sympathy can sometimes be hard because what do you say when you find out someone has a brain tumour? Pretty much just "sorry" and "I hope the surgery helps." And I just say "thanks, me too." A lot of people tell me it's okay if I don't want to talk about it. I'm usually fine with it and fine with questions. I made a really dark joke once (something about "already having an unwanted friend in my brain" or something, I forget exactly) but otherwise my coping humour is fairly mild. But sometimes, like when writing this journal entry, it just kind of overwhelms me. It's not any single fact or detail the way my depression/ADHD breakdowns tend to be, nor is it the other common option of a general, undefinable sense of tired sadness. It's just… all of it. Surprisingly, the only time I really thought to myself, "Why me?" was the one breakdown I had in the hospital. Again, not being spiritual, I don't ascribe this kind of thing to a higher power or good or bad luck. I have no family medical history that would suggest this kind of thing. Sometimes shit just happens. If anything, I think that more of bad things that happen to my friends than to myself.
Ultimately, it’s a lot like any other long term life problem. Day to day, you do your best to get through life. Some days nothing feels different. Some days the weight makes you crumble. As with most appointments and important events, it’s put me in ADHD waiting mode. I can’t really do anything significant before the surgery. Nothing exists after it until I’m through to the other side. I can hypothesize about and prep for the recovery period, and what life might be like afterward, but after a point my brain just stops. All my focus is on the 15th of April.