Adventures in meningioma · 2:19pm Apr 4th, 2021
*tap-tap*
Is this thing on? Is anyone reading this?
Yeah, I know I was never a prolific writer here, and I pretty much dropped out of the fandom a number of years back, but I've recently undergone a fairly significant life event and suddenly felt the urge to write it down, so I figured that here was as good as any place.
So, what was this significant life event?
Brain surgery.
Specifically, to remove a meningioma: a tumour that was slow-growing under the top left of my skull and, having run out of available space in my left sinus cavity decided it wanted to try crushing the left hemisphere of my brain and both optic nerves to make more room for itself. Typically such growths are non-cancerous, but I won't have full results until Friday due to the Easter public holidays causing the usual meetings to be disrupted.
Backtracking a little to where this started, or at least became more obvious for me. For the last several weeks I'd been experiencing a number of symptoms that I had assumed were unrelated: I was getting occasional headaches for no apparent reason; I was feeling congested, but there was no mucus issues; I was getting a low dull roaring in my ears, especially in the evenings; I was starting to get some weakness, coordination, and spatial awareness issues in my right hand; I was getting "dark starriness" in my vision that was taking longer to clear than I thought normal.
My first assumption was maybe stress or a sinus infection due to allergies. The symptoms start getting worse and become more frequent. Eventually I go to a local GP (General Practitioner), who rules out sinus infection but says to get a blood test and go see an optometrist for an eye test. Next morning is a Saturday, and I wake up with 3 tiny black dots floating in the top of vision of my left eyesight. I should've gone to the optometrist that day, but I cannot rule out that I'm an idiot sometimes. I go get the blood test instead, which comes back mid Monday all clear. Monday when I wake up the black dots are gone, just a little blurry patch there. I book an eye test with an optometrist for immediately after work. Go to the optometrist, talk to him about what's happening, and he runs a few tests. Talks about putting the dilation drops in my eyes for the tests, but it means I can't go anywhere for about an hour afterwards, so I hum and haw about it. He looks in my eyes with a lighted magnifying lens. His expression is troubled. "You have bleeding at the back of BOTH eyes," he tells me, "Go straight to the hospital ER right now; do not go anywhere else. I'll write you a letter."
30 minutes later I'm checking in at the ER - the letter helps me bypass triage in minutes. About 60 minutes after that I've had two CT scans, and the diagnosis is in - a sizeable brain tumour. I get in contact with my wife, who contacts a friend to bring me some stuff for a few days and who moves my car off street parking and into a parking building. I'm being moved to another hospital where they have a brain surgery ward (the one I'm currently in doesn't), but their ER shuts down at 11 PM and my transfer ambulances keep getting diverted to emergencies. Eventually it's just me and a couple of cleaners in the ER ward.
About 11:45 PM I finally get my transfer ambulance arrive. By the time I get transferred, checked in, assessed, and fall asleep it's 2 AM Tuesday morning.
I get woken suddenly at 7 AM with my bed surrounded by the hospital neurosurgery team: half a dozen doctors, surgeons, consultants, and students, who talk and ask rapid-fire questions for about 3 minutes before leaving. "You're booked for surgery on Friday," they tell me. "Your scans will happen before that but we don't know when because they're busy." It's all a bit confusing for someone who has literally just woken up.
Basically after that there's a lot of waiting, but the time seems to just disappear somehow. A battery of eye tests on Wednesday show that my vision is actually pretty good, apart from the tumour trying to crush my optic nerves. I get my MRI scan Thursday morning - a young student doctor comes to see me Wednesday evening to shave my head (unnecessary) and stick some plastic-coated rare earth magnets to my noggin. "These are a $120 each," he tells me, as he presses a dozen of the sticky tiny dots to my scalp. "So don't lose them."
Thursday the lead neurosurgeon tells me that typically the procedure takes 3 to 5 hours. "We expect yours will probably be closer to 5 hours due to the tumour's size and shape. There's a 5% chance that something goes wrong; 2 of that 5% is bleeding in the brain; and there's a less than 1 in 1000 chance that you don't wake up from the procedure." I'm not worried, and I tell him I like those odds.
Friday morning I'm wheeled down to the operating theatre to wait. I'm a bit dozey while waiting, so I have no memory of getting prepped for anaesthetic. I wake up in the post-neuro ward and it's night time. Apparently I was on the operating table for 8 hours, not 5!
Aside from that, everything went well; they had to leave a tiny bit of the tumour in there because the alternatives are to cut into the major blood vessel that feeds my brain and that would cause bleeding inside the brain (not good) or cut out healthy brain tissue (also not good).
Post-surgery recovery starts off pretty well, and I overhear some of the hospital staff discussing my case, using terms like "very lucky". Apparently if I had done nothing for another couple of months I would have been looking at things like permanent vision issues (to the point of complete permanent blindness) and partial paralysis on the right hand side.
Now comes the drain problem. The drain is a small plug under my scalp, with a tube leading to a plastic jar that drains off excess fluid your body instinctively sends to areas that have experienced trauma. "We'll take it out Monday," say the nurses, which is fine with me because the thing is a bit of a nuisance. Mid-morning, the nurse removes some stitches, releases the suction, "This'll just pop right out."
Pull, wiggle, tug, prod, poke, pull, shimmy. It doesn't want to release. She goes to get another nurse, who also has a good crack at it. No joy. "We'll track down the doctor that put it in," my nurse tells me. Except he's in theatre, so it's over an hour before I get to speak to him. More tug tug tug pull on the drain, to the point I can feel my scalp moving around. "That's actually starting to hurt a bit," I tell him. He tells me he'll track down my post-op scans and look at those. That takes about an hour, and I've just started eating lunch when he returns. "We're going to have to put you back under general anaesthetic to get it out," he tells me. Turns out that a pointy piece on one of my skull bones has managed to thread its way through a small hole in the plug base, literally pinning the drain to my skull. There is a very brief mention of going under a local anaesthetic, but worst case scenario is that they need to open my head up again, which is a 2 hour procedure, which means general anaesthetic, and he's going to be ready for worst case. "We'll get it done today," he tells me.
I look sadly at my couple-of-bites-reduced lunch. "No more to eat or drink?" I ask.
"Nothing to eat or drink, starting right now," he says.
More waiting, with nothing to eat or drink. There's a major emergency, so I get bumped down the list. "We'll get you done today" I keep getting told. Dinner time rolls around, and I have to send mine away. A nurse comes and puts a drip in my wrist to stop me from dehydrating. Around 7 PM I hear a helicopter land at the hospital, and I instinctively know what is later confirmed: another major emergency, and I've been bumped again - "But we'll still try to get to you today". I feel horrible, and can't even sleep due to discomfort. Eventually a nurse shows up just shy of midnight. "They're not getting to you today, but you're up first thing tomorrow. You can have something to eat and drink." It's a soggy sandwich and a glass of juice.
I'm still not sure if I slept at all that night, but at 7 AM I get wheeled down to the operating theatre. I'm much more alert and awake this time, so I spend a nice time chatting with my anaesthetist while we wait for the surgeons to arrive.
By 10 AM it's all over, and I'm awake back in the ward. Only out for about 15-20 minutes; they loosened up a couple of staples in my scalp and the drain just popped right out. Of course, because I've been under general anaesthetic, policy says that the hospital needs to monitor me for 24 hours post-op. Basically the stuck drain has meant an extra 48 hours in hospital.
Just a note on the staples: 41 staples in the scalp, plus 3 sutures. My dad reckons it looks like a horseshoe-shaped zip. An ambulance driver who had a look at them while I was waiting for discharge said she thought they almost looked like jewellery.
So what now? Basically, staples out and my results discussion Friday. If negative for cancer (which is expected), an MRI scan in 3 months. If there's no sign of regrowth, scan again 6 months after that, then 12 months after that scan, 2 years, 5 years, 10 years, etc.
The biggest annoyances out of it are I'm not allowed to drive for at least 4 to 6 months, which given a widespread place like Perth, Western Australia is a major pain in the hindquarters. I'm also still feeling tired most mid-afternoons, and need to get in a rest or nap, but I expect that will pass in a few days. We also had to cancel our planned school holidays trip to the south coast, which is a bit rough on the kids, but hopefully we can have that later this year.
So, that's been the primary event of my last couple of weeks, documented for yours (and my) convenience.
Yours in recovering health,
The Ponytrician.
Holy heck dude.
Glad things went okay, it definitely sounds like an exciting chunk of time.
You might not have considered yourself a prolific writer, but I see that I've read all of your stories with four of them favorite'd.
Congrats on surviving that, I know exactly what you went through. Found out a while back that some general pain in my chest, fatigue, and elevated blood pressure I was experiencing were because I had a tumor pressing on my heart. It was found by accident; they were doing a CT scan to see if I had blockages in the valves of my heart, which I didn't, but I did have a soda can-sized growth attached to my breastbone. When I saw my doctor to follow up on the scan, as soon as he opened the images he told me I needed to see a cardiac surgeon out-of-state, the best in the region according to him, and I needed to see the surgeon yesterday. Cue a repeat of more-or-less what you posted.
I hope the follow-up scans come back benign. I'll be rooting for you.
Holy crap. Good on you for getting this looked at early, and thank goodness it turned out well in the end. As far as we know, anyway, but here's hoping for clear sailing ahead.
5490040
I could have done without the drain getting stuck and the extra 48 hours in hospital. I don't know about exciting - "interesting times" was the term being used by a number of friends.
5490053
Congrats to you to! Modern medicine is pretty freaking amazing. Also, the size of a soda can? Geez. My growth was about 41mm x 43mm x 45mm, with another 19mm x 17mm tentacle (that's what I'm calling it) in the sinus.
5490056
Thanks. If I'd been smarter, I would have got this looked into at least a week earlier. Morale of the story is: if you're having funky vision issues, go get an eye test; you never know what it might show.
Wow. And here I was freaking out over having a super minor surgery. I'm glad it went well, though!