Sheila Lyons, 46, from Cloughey in Northern Ireland, was diagnosed with an acoustic neuroma, a low-grade brain tumour, in late 2022 after months of unexplained dizziness. As a single mother of two, Sheila faced the terrifying diagnosis while still recovering from the trauma of a house fire, the breakdown of her marriage, and the isolation of the pandemic. The tumour was pressing dangerously on her brainstem and required urgent surgery. Following a successful 12-hour operation, Sheila has since adapted to a new way of life, dealing with the long-term effects of hearing loss, fatigue and facial nerve damage. She is now working with Brain Tumour Research to raise awareness and help ensure others facing similar diagnoses feel less alone.
Sheila tells her story…
In spring 2022, I went on my first big hike with a group of work friends. We took on one of the Mourne Mountains, and I remember feeling excited to be trying something new. But during the six-hour walk, I began to feel unexpectedly dizzy. At one point, I was staggering so much that someone offered me their walking poles to help keep me steady. I put it down to being unfit or maybe just vertigo from climbing.
The dizziness didn’t stop after that day. It started happening when I was walking my dog Milo in the mornings. I felt like I was swaying down the street, almost as if I was drunk. It kept happening for several weeks, and I couldn’t ignore it any longer. Thinking it might be hormonal, I went to my GP.
She ran blood tests, which came back clear. But thankfully, she took my dizziness seriously and referred me for a CT scan at Downpatrick Hospital. A few days later, I was working from home when the phone rang. They had found a shadow on the right side of my brain and wanted me to return for another scan, this time using contrast dye.
I was completely alone when I was told I have a shadow in my brain and just broke down.
It was such a shock. I’d had no headaches, no vision problems, and although I had been tired for years, doctors had always put that down to thyroid issues. I never considered dizziness to be a brain tumour symptom.
All I could think about was my two children. Niamh was 16 and Ruaridh was just 10. I’m a single parent, and with my family all living in Scotland, I knew I was their only support in Northern Ireland. The fear was overwhelming and we'd already faced so much. My marriage had ended badly, we lost our home in a fire, and we went through COVID like everyone else. Just when things were beginning to settle, this happened.
The scan confirmed I had a brain tumour called an acoustic neuroma, also known as a vestibular schwannoma. It was low-grade, but large, and dangerously close to my brainstem. My GP reassured me and even encouraged me to look it up online to learn more. That’s how I found out it was a slow-growing tumour, and for a moment I thought I had time. But things moved fast. From diagnosis to surgery, it was just twelve weeks.
I think I was diagnosed around August or early September, and by November 2022 I was in surgery at the Royal Victoria Hospital in Belfast. In the time between, I visited multiple specialists and had hearing tests and further imaging. Despite what I had read, I wasn’t expecting such urgent surgery. I thought maybe they would monitor it or treat it with radiation. I didn’t feel unwell, so it was hard to process.
Telling my children was one of the hardest parts. They’d been through so much already, and they were trying to stay strong, just like I was.
But I know they were scared. I arranged for a friend to come and stay while I was in hospital. It wasn’t until I actually left for surgery that the reality seemed to hit all of us.
I was terrified. I had never had an operation before. The thought of being under general anaesthetic for hours, with the risk of facial paralysis and total hearing loss, was frightening. I knew that when I came out, things wouldn’t be the same.
I arrived at the hospital the night before the surgery, and I broke down crying. The staff were kind and gave me a private room. The next morning, they woke me early, and I showered while staring at the marks on my head showing where they were going to operate. I tried to stay calm, but as they wheeled me into surgery, I couldn’t stop crying.
The operation lasted 12 hours. The surgical team removed 95% of the tumour but left a small part where it was attached to my facial and inner ear nerves, to avoid the risk of permanent paralysis. I was told if they hadn’t caught it when they did, it could have led to an irreversible coma. That still gives me chills.
Thankfully, there were no major complications, and after just three days I insisted on being discharged. I recovered at home with the help of friends and tried to take things day by day.
The recovery process was difficult – my head was swollen, my balance was poor, and the fatigue was overwhelming.
I lost all hearing in my right ear and developed nerve damage that still affects my face. Even now, two years on, I struggle to concentrate, and long days at my computer job with Ulster Wildlife leave me completely drained.
Socialising is difficult. Background noise in cafés or restaurants makes it hard to follow conversations, so I often avoid those places or go to events alone. I’ve even returned to a few music concerts, but I go by myself to avoid the pressure to talk.
People tend to forget about my disabilities because they are hidden. I have to remind them to turn off background noise or speak clearly. Even at work, where they try to support me, it’s easy for people to forget what I’m dealing with.
It took two years to get hearing aids through the NHS. By then, I had adapted to one-sided hearing and didn’t have the energy to keep chasing it. The aids help a little in some situations, but they don’t block background noise and they don’t fix everything.
I’m so pleased to have found Brain Tumour Research online after my diagnosis and to support this important cause.
I wanted to take part in 200k in May Your Way but I wasn’t sure if I could walk that far. Then I saw someone doing it on horseback and thought: “perfect, I can do that.” My horse Jack and I took on the challenge and I’m so pleased to have raised nearly £500.
It was tough at times, but it felt good to give back. I’m more aware of my limits now, but I still try to stay active where I can.
I hope my story helps someone else feel less alone. Brain tumours, even when they’re low-grade, can be devastating. We need more research, better support, and greater awareness to hit our ultimate goal: finding a cure!
Sheila Lyons
August 2025
One in three people in the UK knows someone affected by a brain tumour. This disease is indiscriminate; it can affect anyone at any age. What’s more, brain tumours continue to kill more children and adults under the age of 40 than any other cancer yet, to date, just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
If you have been inspired by Sheila’s story, you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure.
