I have a big, sausage-like cyst squished firmly on my spinal cord and Im about to have surgery to remove it. It really puts life in perspective, writes Jessica Warriner
Last month, I found out I need to have brain surgery. Ill be getting a piece of my skull taken out and part of my first vertebra. Its happening on Thursday.
I dont think of myself as sick. Theres still a disconnect when I look in the mirror and cant 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, Ive gradually been accepting it a little more. Theres less confusion and resistance every morning when I wake up and realise it all wasnt 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. Id caught the flu, but something felt wrong about how dizzy it was making me I couldnt lie down without everything spinning and feeling like Id had a huge night out. This led to a doctors visit, which led to a CT scan, which led to an MRI and words Id never heard before: Chiari Malformation, Type 1.
A Chiari malformation is a condition where your skull isnt the correct shape to fit your brain the cerebellum doesnt 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.
Im 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 its 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 Id 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 stepfamilys 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 couldnt 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, Id 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.
Syringomyelias a progressive condition often linked to Chiari malformation. Its 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, itd be a slipped disc.
A few weeks and two emergency room visits later, I walked back into my neurologists office with heavier arms and weaker fingers. The MRI results were up on his computer screen, and you didnt have to be a medical professional to spot the issue (assuming youve obsessively googled the hell out of your weird rare medical condition).
It wasnt a slipped disc. Theres 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 procedures 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.
Its not a cure, and results arent guaranteed. But many people see a huge improvement post-surgery, and when theres a big syrinx in town, theres 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.
Its been a strange few weeks since I signed the surgery paperwork. Sometimes, usually during daylight hours, Im 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 Ive 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 Id 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 its scary, sometimes it still doesnt feel real, and sometimes its 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.
Theres just one sleep to go. And to answer everyones favourite two questions when it comes to neurosurgery: no, I wont be awake, and no, I wont be playing guitar.