#i need to lay and mope in a fugue state

[neuroma-neuroses]

Getting diagnosed with an acoustic schwannoma - A Handy Guide

I will freely admit that I am a massive hypochondriac. If anything is bumpy, achey, flakey, misshapen, itchy or just generally a bit suspect, I will have it thoroughly vetted by two GPs and a handful of specialists. So, imagine my surprise when my doom and gloom suspicions actually came to fruition.

In October of 2016, I thought I had the flu. I was bone-tired all of the time, an annoying reality when you work for yourself because your bed is RIGHT THERE so wandering over for a nap seems like a healthy and productive use of employee time. I was dizzy too, a mix of 3am tipsy-dizzy and post-flu recovery dizzy. I felt hot all of the time and kept falling over. I sooked to my boyfriend Reuben. I ate frankly dangerous portions of ice cream. I fell asleep in front of Netflix every afternoon, hoping that when I awoke I’d feel better. But the illness kept dragging on.

After two weeks of housebound moping, my boyfriend, a doctor himself, gave me marching orders to see a GP and stop asking him twenty times a day to diagnose me. I trooped over to a local GP, a grandfatherly Greek man with big expressive eyes and gnarled, expressive hands. He poked and prodded me, listening to my chest as I wailed dramatically about how tired and gross I felt.

‘You’re run down!’, he said, writing me a prescription for antibiotics. I clasped it like a saint’s relic, sure my salvation was near.

A week later, I was back with new symptoms: my right ear was blocked and achey, like when I had ear infections as a kid.

His expressive hands flapped this away. ‘You’re not getting enough fruit and sunshine!’, he said, writing me a script for a more general antibiotic.

A week later, I was back again. The pain in my ear was awful and it felt blocked and full. I thought I had a head cold that had mutated into an ear infection. I imagined the superbug that all these antibiotics had concocted scurrying about my head, blocking my ear.

‘No no no no!’, the hands flapped their disapproval. ‘You’re depressed!’. He wrote me a prescription for antidepressants with the air someone whose precious time is being squandered. This is when I looked for a new GP.

I’m sure other young females have experienced this: getting a GP who takes your concerns seriously is a hard task. I have anxiety as well; as soon as I say this to a new doctor, I can see them try to make my complaint a mental health issue. ‘You have a sprained ankle? Oh no, it’s OBVIOUSLY your anxiety playing up.’

I almost cried with happiness when my new GP looked in my ears for blockages, sure she’d find it red and inflamed. But it was fine. I told her about my fever. But my temperature was normal. Medically, there was nothing wrong with me. She gave me more antibiotics and a medication to stop my dizziness, looking at me like I was a puzzle to pick apart. ‘Sophie, what is wrong with you?’, she chided me.

That night, the oddest symptoms started. I felt unreal: that’s the only way I can describe it. The world was shifting and bucking beneath me like the deck of a ship. My brain felt too big for my skull, all lit up like a match head. I had a fierce migraine, razorwire shoved up into the back of my eyeballs. I lay in bed, crying, getting up every so often to tumble over, unable to walk properly.

Reuben, ever the pragmatist, gave me his diagnosis after weeks of abstaining: ‘You’ve had a long term, very bad migraine’.

‘My brain is swelling’, I cried. He patted my head, unconvinced. I don’t blame him. But that language turned out to be oddly prescient. 

The next day, I was in a fugue state. It was the US election. I was in no state to work; I sat at my computer all day, watching as the unreality of Trump’s presidency unfurled, feeling like I was in a nightmare. I called 13HEALTH. ‘Should I go to hospital?’, I asked the nurse.

‘What are your symptoms?’

‘I just feel really unwell.’ I realised after I said it how stupid it sounded.

I remember the look on my GP’s face as I fell in through her door again that afternoon, determined to get a diagnosis this time. She took my temperature: normal. My blood tests had come back: normal.

‘What’s your family history?’, she asked.

I was taken aback by this. ‘My mum is fine. My dad died when I was 17 of a brain aneurysm.’

Her brow furrowed. An MRI was ordered. At this point, I thought the MRI would show an ear infection, so I was cheerfully resigned to spend half an hour in that loud metal tube. I spent the time thinking up story ideas. Afterwards, I pottered around the house, cleaning it for the first time since I’d fallen ill, thinking I was on my way to getting better. I was in the yard when I got a call: my GP. As soon as I saw the number, my heart lept into my throat.

‘Hi Sophie, your doctor would like to see you urgently to discuss the results of your MRI. Are you free now?’

A call like this is roughly number three on the top five of Calls You Hope You Never Get. The half an hour between hanging up on that call and meeting my GP to be told I had a brain tumour is the worst half an hour of my life. During that 30 minutes I knew something was very wrong but didn’t have a name for it yet. The name came with the radiologist’s report on my MRI, read out by my GP to my stepdad, whom I had called in a panic: suspected acoustic schwannoma.

There was a 20% chance it was malignant. I’d find out more from the specialists. They were booking me in for a neurosurgical meeting immediately given the rarity of the tumour. It was pressing on my brainstem. It was causing brain swelling. That was why I was so unwell. 

I finally had a name for it. And it was even worse than my hypochondriac self had the gall to imagine. 

Part of me wanted to run down the hall and wave the diagnosis in the face of the GP who thought I needed ‘more sunshine’. I’ve since spoken to another young female who got diagnosed with a brain tumour and was similarly dismissed by a series of GPs. If it weren’t for my father’s medical history, I might not have been diagnosed for a long while.