How a Leeds woman's vision concern led to the discovery of a brain tumour on her optic nerve

Owing to a busy life at home and at work, months went by until she had an appointment to get her eyes looked at. She eventually attended an opticians appointment in November 2018, but scans showed nothing was wrong with her eyes. She had also been suffering from headaches – which she was told were hormonal.

The reason for her vision issues and headaches would soon become clear, as she was diagnosed with a brain tumour in December 2018. Writing for Leeds Beckett University for Brain Tumour Awareness Month, Sarah explained: “I had to wait three weeks for an MRI and then another few days to get the results. After that things moved very quickly, I was told the scan had shown a cyst on my brain and I was booked in to see a neurologist a few days later.

"I saw my neurologist who told me I had a brain tumour which was sitting on my optic nerve which explained the vision problems; I’d be having surgery the next day. To say I was terrified is an understatement but luckily I didn't have too much time to worry before I was heading off to the operating theatre the next morning.”

Surgery was followed by a long recovery comprised of intermittent hospital appointments. She was able to rely on support from occupational therapists, psychologists, physiotherapists and counsellors, learning about various areas of healthcare along the way.

She said: “When I was originally diagnosed, I had no idea just how many areas of healthcare I would be accessing in the following weeks, months, and years. All of this has given me a real insight into how important all these different roles are.”

Sarah’s brain tumour returned six months after her surgery, just as she was planning to return to her job as communications and campaigns officer at Leeds Beckett University.

She explained: “I had further surgery to remove it and then suffered a cerebral spinal fluid leak, an escape of the fluid that surrounds the brain and spinal cord, which led to me contracting meningitis and I had to have two further surgeries to repair the leak – what I can quite honestly describe as a month from hell. The recovery this time was much longer and more complex.

“However, my last surgery was in August 2019 and I returned to work in October 2020. I now have annual MRI scans followed by appointments with my neurosurgeon to check everything is as it should be, and so far, fingers crossed, it’s all okay.”

Although Sarah is now back at work, her ordeal has left with extreme fatigue, nasal problems and a weakened immune system. She will be dependent on steroids for the rest of her life but still describes herself as “one of the lucky ones”.

She said: “I’ve been left with extreme fatigue, nasal problems, and a weakened immune system. I take a lot of tablets to keep me going and am steroid dependent for life, but I still count myself as one of the lucky ones. I’m back at work and managing my day-day-life. Some days are easier than others but as time goes on I learn how to manage it all better, and as they say what doesn't kill you makes you stronger.

"The key thing is to know the symptoms and get help if you’re concerned. If I’d known about the main symptoms of a brain tumour, I might have got help quicker, and my personal advice if you have any change in your vision get it checked out by an optician, after all it was the optician that spotted there was something wrong and got me the help I needed.”

Information and support can be found by visiting the The Brain Tumour Charity and Brain Tumour Research websites. Sarah spoke about her experiences on the Leeds Beckett University School of Health website to raise awareness of tumour symptoms.