Last month, I found out I need to have brain surgery. I’ll be getting a piece of my skull taken out and part of my first vertebra. It’s happening on Thursday.
I don’t think of myself as sick. There’s still a disconnect when I look in the mirror and can’t see anything externally wrong – maybe darker circles under my eyes – but I feel my body stinging and tingling and burning itself up inside.
As the days go by, I’ve gradually been accepting it a little more. There’s less confusion and resistance every morning when I wake up and realise it all wasn’t some unpleasant dream, and yes, the symptoms are still very much here
I was diagnosed with a chronic illness out of the blue in June 2015. I’d caught the flu, but something felt wrong about how dizzy it was making me – I couldn’t lie down without everything spinning and feeling like I’d had a huge night out. This led to a doctor’s visit, which led to a CT scan, which led to an MRI and words I’d never heard before: Chiari Malformation, Type 1.
A Chiari malformation is a condition where your skull isn’t the correct shape to fit your brain – the cerebellum doesn’t have enough space, so the cerebellar tonsils herniate towards the spinal cord through the hole in the base of your head. The resulting pressure can affect brain function and cerebral spinal fluid flow.
Naturally, I took this sudden news with aplomb and calmly went about my day.
Nope. I freaked out.
I’m pretty healthy, and had never been on the patient side of the major illness fence .
While Chiari can be acquired through trauma – like a car accident – it’s usually a congenital condition. Often, people remain asymptomatic. For those with symptoms, issues can include severe headaches, neck pain, dizziness, balance problems and brain fog, among many others.
To my relief, the dizziness passed, and I crossed my fingers I’d flip straight back to my symptom-free version of Chiari. I pushed it out of my mind, got the all clear to fly, and set off on a trip to Asia in July.
A few weeks after the diagnosis, I was walking upstairs at my stepfamily’s place in Kuala Lumpur and coughed. Sharp, shooting pain squeezed around my chest, sparked down my left arm, and I ended up at a doctor . He prescribed me antibiotics for a chest infection and I was on my way. My dad made a joke about making the nachos too spicy.
Shortly after, in Tokyo, I lay in bed and realised my arms were partially numb. I couldn’t cough without the same shooting and burning pain snaking through my limbs. I looked up the details of the closest hospital just in case, closed my eyes, and waited for the morning.
Fast forward to later in the year. Just like with the original Chiari diagnosis, I’d gotten over the shock of the continuing arm numbness and pain. While irritating, it was manageable. But my GP sent me off to a neurologist to check things out just in case.
My physical exam was fine – special skill to put on resume: can detect “sharp” and “soft” like a boss – and my neurologist recommended a back MRI to check for any slipped discs or syringomyelia.
Syringomyelia’s a progressive condition often linked to Chiari malformation. It’s when the obstructed flow of cerebral spinal fluid causes cysts, or syrinxes, to form in the spinal cord. As syrinxes grow, they can cause damage to the cord, causing pain, weakness and as with Chiari, a multitude of other symptoms. It affects around eight in 100,000 people.
I crossed my fingers and hoped if anything was found, it’d be a slipped disc.
A few weeks and two emergency room visits later, I walked back into my neurologist’s office with heavier arms and weaker fingers. The MRI results were up on his computer screen, and you didn’t have to be a medical professional to spot the issue (assuming you’ve obsessively googled the hell out of your weird rare medical condition).
It wasn’t a slipped disc. There’s a big, sausage-like syrinx squished firmly in my spinal cord.
My appointment with my neurosurgeon was the next day. I handed over a folder, and he flipped through the inky MRI scans inside.
“We need to operate.”
Neurosurgery. Real, actually happening, happening soon, brain surgery.
The procedure’s called a posterior fossa decompression – a bit of skull is removed, along with part of the first vertebra, to make room for the Chiari malformation and let cerebral spinal fluid flow more easily. From there, the reduction in pressure can reduce or at least pause the syrinx size and the associated symptoms.
It’s not a cure, and results aren’t guaranteed. But many people see a huge improvement post-surgery, and when there’s a big syrinx in town, there’s not really another road to go down.
The difficulty with these chronic illnesses is the sheer unpredictability of symptoms. Different people can have entirely opposite representations of the conditions, which can lead to issues with diagnosis. I feel lucky that overall, my doctors and specialists have been incredibly understanding, knowledgeable and proactive in helping me get to this point.It’s been a strange few weeks since I signed the surgery paperwork. Sometimes, usually during daylight hours, I’m pretty gung-ho about it all. Other times, I wake at 3am with a jolt, mentally scanning my body to check for any deterioration. I fumble for the light switch and waggle my fingers in front of my face, eagle-eyes looking for traces of slower, stiffer digits. My throat gurgles and I swallow around a tongue that seems too big for my mouth.
In a lot of ways, I feel calmer than I have in a long time. The only thing I need to focus on is getting better, and I’ve no concerns about surgery costs (cheers, Australian public healthcare system). Illness has been a crap but highly efficient way of throwing everything into perspective for me. Look after your health and whenever possible, be near the people you love who love you right back.
Did I think I’d be starting 2016 with brain surgery, an impressive scar, and a fuzzy recovery timeframe? No. But the only thing to do is face it head-on. Sometimes it’s scary, sometimes it still doesn’t feel real, and sometimes it’s weirdly amusing. One of my closest friends and I discussed dressing up as a frontal lobe and cerebellum for a pre-brain-surgery meet up.
There’s just one sleep to go. And to answer everyone’s favourite two questions when it comes to neurosurgery: no, I won’t be awake, and no, I won’t be playing guitar.