Scary and debilitating migraines led to a brain tumour discovery for former Noosa and Gympie Today journalist Rose Astley, and now she’s urging anyone with similar symptoms to ’trust your gut’.
At just 26, Rose’s recovery journey was ’hell on earth’ after suffering Covid, meningitis and hearing loss following hours of surgeries.
One year since her diagnosis in May 2023, Rose tells her story and celebrates her freedom from hospital beds.
It all started six years ago when she began experiencing severe migraines which would result in blurry vision before progressing to complete loss of vision, usually out of one eye, followed by a bad headache, vomiting and nausea.
“Often this would leave me bedridden for an entire day,“ Rose said.
“I had spoken to numerous general practitioners about this and no one really had any concerns and told me to manage them with aspirin.
“Sometimes I would get two of these migraines a month, and then sometimes I would only get two a year – they were very sporadic.“
Despite living in fear of her next migraine, Rose never worried too much due to reassurance from her doctors.
“However, one night I had a migraine with the classic symptoms, except I started to experience a numb feeling in my arm and my mouth,“ she said.
“I called my mum, who told me to call an ambulance and I was rushed off to hospital, where the doctor ordered I go get an MRI of my brain.“
By this point, she was living in Brisbane and had a new GP who was incredibly supportive.
“When I got the scan done, the clinician told me I’d receive a phone call from my GP within five days, however, my GP called me almost immediately after and told me he needed me to come into the clinic ’and bring a support person’ with me,“ Rose said.
“My heart was absolutely pounding, I felt like throwing up and immediately assumed I had brain cancer or something.“
Her GP was upfront as they told Rose the scans revealed a brain tumour, however, it looked like an acoustic neuroma which was benign and treatable.
“The tumour was almost 3cm, attached to my facial nerve and pressing dangerously on my brain stem – surgery was my only treatment option,“ Rose said.
Getting the news exactly one week before her 26th birthday, she was in disbelief and didn’t have any idea about what her life would look like going forward.
“I got the news of my brain tumour in late May 2023 and had to wait until November 2023 for my surgery as I opted to go through the public system. So that was six months of appointments with neurosurgeons, ear nose and throat surgeons, genetic testing, joining support groups, doing my own research, and trying to come to terms with what I was about to go through,“ Rose said.
“I knew for certain the surgery would result in me being permanently deaf in my right ear due to them needing to drill through the thick bone behind the ear to gain easier access to the tumour.“
However, there was also a 30 per cent chance of the surgery causing facial paralysis or palsy, due to the tumour being attached to her facial nerve.
“The thought of my face being disfigured and never being able to smile again properly was an incredibly daunting and heartbreaking thought,“ Rose said.
“I did my best to have positive thoughts and try to manifest good outcomes but it was a very dark time for me.“
The first surgery took 12 hours – she was wheeled into theatre around 8am and woke up in ICU around 9pm.
“It went very well, but they weren’t able to remove all the tumour as their preference (and mine) was to preserve my facial nerve,“ she said.
“I spent the next six days in the neuro ward recovering and was so happy to see my face was fine, I could walk, I could swallow and the hearing loss was very manageable.
“Unfortunately, as soon as I got home I noticed I had a dripping fluid coming from my nose, I had to go back to the hospital and they found I had contracted Covid, my coughing and sneezing created too much pressure which allowed cerebrospinal fluid to leak from my skull.
“I had to go back in for a second five hour surgery to fix the leak and then also have a lumbar drain inserted to my spine – another 10 days in hospital being monitored around the clock.“
After being discharged home a second time, Rose was recovering well for four days until she developed 10/10 head pain that would not go away with strong painkillers, an aching back, extreme fatigue and nausea.
“I got whisked back up to the emergency department, had a lumbar puncture done to discover that I had now contracted meningitis,“ she said.
“I had to spend another 10 days in hospital hooked up to intravenous antibiotics which ran around the clock for my entire stay.
“My poor veins couldn’t handle the antibiotics so the cannula kept failing, so roughly twice a day I needed a new one inserted.
“It was quite literally hell on earth, my arms were bruised and swollen, I wasn’t getting any sleep, I couldn’t stomach hospital food so I wasn’t eating – was a shell of myself and was convinced I would never get better and I’d never get to go home.“
Thankfully, Rose was able to go home one week before Christmas 2023.
“As soon as I got to be home with my family and dogs in my own environment I recovered incredibly fast,“ she said.
“By Christmas Day, I was me again. I really haven’t looked back since. I was back to work full time by January and now living life to the fullest, with one good ear.“
Rose urged people to advocate for themselves when experiencing symptoms that are not normal.
“If you have debilitating headaches, if you are a little bit wobbly on your feet, if your face twitches or feels a bit numb, or if you are experiencing hearing loss in one ear, please go to your GP and insist on getting an MRI,“ she said.
“In my research and after joining support groups and chatting to people, brain tumours are actually quite common.
“If mine had been found earlier, it would have been much smaller and my options for treatment could have been much more simple and less invasive.
“My biggest advice is trust your gut.“
