Man’s hearing loss turns out to be a rare brain tumor

By Alexandra Snow

A man who assumed his hearing loss was a part of getting older was shocked to find out it was a symptom of a rare genetic brain tumor.

Michael Archer, 35, joked with his colleagues that he was going deaf and his legs weren’t as strong as they used to be after he turned 30.

In September 2022, he went and got his ears cleaned and later booked an appointment with a physical therapist, who referred him back to the doctor as she suspected the weakened muscles were a neurological issue.

In the summer of 2024, Archer was sent for an MRI at Hinchingbrooke Hospital and a blood test.

To his horror, he was diagnosed with neurofibromatosis type 2 (NF2) — a rare genetic condition characterized by the growth of noncancerous tumors on nerves, particularly the brain and spinal cord.

Archer, a customer success specialist for a global IT company, from St. Neots, Cambridgeshire, said: “When I started working in an office, it became an inside joke that ‘Michael is deaf’.

“I’d always been fit and played football, but my body stopped working as it should. I felt weaker, and my coordination felt off.”

"I was so scared after my diagnosis, my whole world has been completely changed and tipped upside down."

As his symptoms started to worsen after his 30th birthday, Archer decided to go to the doctor, who initially said they weren’t concerned.

It was only when Archer went to the physical therapist in March 2024 because he felt that his problems were muscular, that more checks were done.

He told Talk to the Press: “I could have brushed these symptoms off as just getting old, as they really started after I hit 30.

“My physio straight away thought it was neurological, so referred me back to the doctor and then in the summer of 2024, I had my first MRI.

“I was really blasé about it and didn’t expect anything bad at all.

“After my MRI, I was staying with a friend and got a random call to come in to the doctors the next day.

“I joked and said to my mate, ‘I bet I’ve got a brain tumor’.

“I sat with the doctor and he did some tests on my legs and then showed me two tumors in my brain and two on my spinal cord.

“The doctor said he thought it was NF2. I was stunned and just couldn’t grasp what was happening to me.

“I cried the whole way home to my friends and thought f*** I’m going to die.”

The tumors are compressing his spinal cord, which causes stiffness in his legs and coordination issues.

After his diagnosis in October 2024, Archer said he turned to drinking.

He said: “It sounded like a death sentence, so my first reaction was complete depression.

“I started drinking heavily and struggling to cope, I basically got drunk to run away from the diagnosis for the first few months.

“Overnight the whole life you imagine is gone and not going to be what you thought.”

Archer, who is now treated out of Addenbrooke's Hospital, has to have a surgery in October 2026, whereby the surgeon enters through the throat to access the spinal cord and remove two tumors.

He said: “I was scared so I’ve put the surgery off for a year. I could wake up paralyzed or with a feeding tube, or a breathing tube, or have a stroke.

“It’s a horrible choice between surgery risks or naturally becoming paralyzed.”

Straight after surgery, he will be put on Avastin, a medicine that should stop the brain tumors growing any further.

One of his brain tumors has grown by 3 mm in six months, so he imagines he will be on Avastin for the rest of his life.

He said: “It is like a lottery where the tumors will grow.

“You are always uncertain and you don’t know what's around the corner.”

Archer now uses his social media platform to turn his experience into advocacy and raise awareness and money.

He said: “I started googling NF2 and all of the studies were out of date and everything online was pretty grim.

“I decided to go on Instagram and talk about my experience and see if I could connect with others in the same position.

“I got traction and people began reaching out with messages of hope.

“One woman from France messaged me about her 7-year-old son who has NF2 and has already undergone three surgeries and radiation. She said it gave her hope that her son can have a life like mine.”

He said he receives messages just like this from NF2 sufferers and their families across the world, from the USA to Germany to Israel to Australia.

From his social media posts, Archer began the “F*** NF2” campaign where he creates content and sells T-shirts to raise money. Half of the profits go to CureNF2 Corner, a national charity supporting research.

He said: “I still have days where I can't be bothered and just want to give up, but this gave my life meaning again.

“With awareness we can cure this. We need awareness to get more funding so scientists can create that cure.”