Allen Russell, 46, from Northamptonshire, was diagnosed with a brain tumour in 2023 after initially seeking help for what he believed was a persistent toothache. Now living with a low-grade schwannoma, he is sharing his story to raise awareness and encourage others to advocate for their health.
Allen tells his story…
I was seriously ill in 2015 with pancreatitis; it came completely out of the blue and after spending a long period in hospital I had struggled to regain the significant amount of weight that I had lost.
Then during 2020 and into 2021, through the COVID pandemic, I went through a period of extreme weight loss which led my doctors to put me on Total Parenteral Nutrition (TPN) a form of intravenous feeding . From that point I very quicky reached my weigh target and was feeling the best I had felt in seven or eight years. I was finally able to maintain my wait and had energy again.
Then, whilst on holiday in the summer of 2022, I developed what I thought was a toothache. After seeing my dentist, who confirmed that my teeth were OK, I went to my GP and was treated with a nerve blocker. The medication had pretty severe side effects and didn’t solve the issue.
The pain continued and in February 2023, I decided to seek a private opinion from a neurologist. He immediately changed my medication and I was sent for a private MRI in April.
In May, my consultant broke the news: I had a brain tumour, a schwannoma.
It was a huge shock but he took me through the images from the scan and explained the exact type of tumour that I have. Strange as it sounds, I’m lucky and have one of the “better” types of tumour because it is low grade, slow growing and non-cancerous. It grows around one to two millimetres per year.
Mine measures 25mm, meaning it had likely been growing for around 10 years.
In hindsight, I had experienced balance issues. The tumour is growing on the vestibular nerve, which regulates balance, and sits close to the nerve that controls hearing. I also have mild tinnitus. I had always put these symptoms down to muscle damage from previous surgeries, working in the motor sport industry in noisy environments, and simply getting older.
If I hadn’t pushed for further investigation beyond my GP, it could have taken much longer to diagnose.
I consulted three different private surgeons to fully understand my options. At 25mm, I am on the borderline for surgery. If it grows further, surgery may be necessary. I was initially scheduled for surgery at the John Radcliffe Hospital in September 2024, with gastroenterology and neurology teams working together to support me. However, the operation was cancelled at the last minute due to low blood levels that had not been checked beforehand.
After reviewing my complex medical history, doctors ultimately decided not to proceed with the surgery. Given that the tumour is low grade and slow growing, the decision has been made to monitor it annually under a watch-and-wait approach.
The risks of surgery included hearing loss in my right ear and potential nerve damage to the right side of my face. Because I receive intravenous feeding, I was also at increased risk of infection.
I know my story is different to many others because my tumour is non-cancerous. I feel incredibly fortunate for that. My wife Carrie and I both have problem-solving mindsets and we focus on solutions. We stay positive and work towards the next step.
It was a huge shock and pretty tough news to process on top of the other medical issues I have experienced, but I’m lucky, I still live a full life even with the brain tumour.
I am Technical Project Director and Carrie is CEO of a sports and entertainment marketing agency called Ignition Collective. My colleagues recently voted to make Brain Tumour Research as the charity that we support in 2025. We want to help make a difference and give other families hope for a cure.
To anyone receiving a diagnosis: keep asking questions, advocate for yourself and never give up.
Allen Russell
April 2026
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 Allen’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.
