After experiencing unexplained hearing loss which didn't concern doctors, Aberdeen-based Emma Chegwyn was eventually diagnosed with an acoustic neuroma in 2022. The 37-year-old still struggles with mobility and has been left with speech issues and facial palsy. She shares her story of coping with the lifelong impacts of her tumour and why taking on our 99 Miles in November challenge is so important to her.
I was working in a restaurant in 2021 when I started experiencing hearing problems. I kept asking customers to repeat themselves but just assumed it was due to ear wax as other family members had this issue.
When a GP informed me that I didn't have ear wax, I decided to go to Boots for hearing test which confirmed significant hearing loss in my right ear. I was shocked at this news especially when they referred me for another test at my local hospital in Aberdeen.
The Ear, Nose and Throat (ENT) specialist downplayed the need for an MRI scan, suggesting the chance of a tumour was "really, really slim", but I insisted on the scan. I felt confused about this strange hearing loss and really wanted to know what was causing it. I remember being unable to understand medical staff who were wearing face masks due to COVID-19 and suddenly realising that up until then, I'd been lip reading. I felt anxious, stressed and just wanted some answers.
Emma before her diagnosis
A few weeks after my MRI scan, I received the results via a letter in the post. On top of the shock of getting such devastating news in this way, I couldn't make sense of what I was reading and spent the afternoon searching the internet for what the various terminology meant.
When I tried to make an appointment with the ENT specialist, I was told none were available for weeks.
I felt overwhelmed and abandoned. It seemed like nobody was taking my condition seriously. I decided I wouldn't stand for it and made daily phone calls, trying to get an appointment.
My balance was deteriorating; I kept stumbling and dropping things at the restaurant where I worked. If I bent down to pick up a fallen fork, I would feel sick. I had to learn how to pick up items without looking at them.
Eventually, a neurosurgeon took over my case. That's when I was told I had a 4.5cm acoustic neuroma (also called vestibular schwannoma), described as "giant". The neurosurgeon immediately banned driving, flying, and contact sports. I used to enjoy playing netball, so this came to an end. It also meant I couldn't travel to visit family and friends. It felt like my independence was suddenly taken away.
But what came next was worse. I was told that if I didn't have surgery within a few weeks, I would most likely die. I felt scared but also wanted to continue with my plans. A friend's wedding was coming up, and I was looking forward to being part of her big day. I postponed the surgery by a week to get dressed up and attend the celebration, thinking I needed to make the most of this occasion in case I wake up from surgery and my health worsens.
After the debulking surgery in October, I had to learn how to walk again.
It meant I couldn't do my job, so I left the restaurant and focused on recovering. By January I was walking again with the help of a stick and started a new job at a travel agency, slowly progressing from part-time to full-time.
When my mobility improved, I joined a walking club and even pushed myself to run on some days. I rejoined Zumba and dance classes, and it felt like I was healthy again. I was even given the go ahead to book a flight to Mexico. I'd lived there before so I was excited to return and spend time with friends.
Emma in Mexico
While I was abroad, I received a call from an oncologist. I felt great so wasn't concerned. When I returned home, I was given the news that my brain tumour was growing again, and radiotherapy was recommended as surgery was too risky. I had to endure radiotherapy for five days a week for six weeks. It was tiring and tough, but I didn't have any other options.
Following this treatment, I experienced balance issues, severe dry eye and couldn't open my mouth wide enough to eat certain foods but assumed this was all just part of my condition. After getting fed up of these difficulties, I asked for a check-up.
Brain tumour patients should not have to fight every day, but this is our reality.
In February 2026, a further MRI scan showed the tumour had grown to 5cm and I required urgent surgery. I was told I was lucky to be alive.
The operation took place in April. The surgeon aborted the procedure mid-operation to prevent a fatal brainstem stroke, as the tumour was larger and more attached than scans showed. When I awoke from the procedure, I realised I had nerve damage, which meant I couldn't walk without the assistance of a Zimmer frame or stick. I've also been left with facial palsy and speech issues but wasn’t given much support with accessing speech and language therapy or specialised physiotherapy at the beginning. I felt abandoned again.
I decided I wanted to do something to create awareness, help other patients feel less alone and remind them that they're not forgotten.
It's motivated me to take on 99 Miles in November. I will use my walker and stick to get the steps in and will take on a treadmill if the weather gets bad so there's no excuse not to complete this challenge.
I like having a goal and working towards something meaningful. It's also important to me to bring attention to this cruel disease and the need for better treatments to prevent the lifelong impacts that brain tumours cause. Knowing that my fundraising can contribute to funding vital research gives me hope that patients in the future won't have to cope with such debilitating tumours.
Inspired by Emma? It's not too late to sign up for 99 Miles in November. Whether you walk, cycle or swim, you’ll bring hope to the one in three people in the UK who knows someone affected by a brain tumour. Join our challenge.
Related reading:
