Mark’s Story

“I was diagnosed with an Acoustic Neuroma brain tumour in September 2021, two days after my 48th birthday. It was 2.4cm in size and was pressing on my brain stem.

My journey started a few years before. I first noticed a change in my hearing, when listening to sounds through my right ear became distorted.  Voices sounded like a dalek.

Being a typical bloke, I ignored it for far too long. I eventually managed to see a doctor at the very start of lockdown and was then referred to the ENT (Ear Nose and Throat) team at Birmingham’s Queen Elizabeth Hospital.  

“Before all this started, I was fit and active.”

Because of Covid, I waited just over a year for an appointment. 54 weeks. I had my first MRI 2 weeks before. A medium sized tumour was discovered,  It was 2.4cm and right on the edge of needing either surgery, or radiotherapy.  

I had another MRI a few months later and the tumour had grown to 3.2cm.  It was compressing my brain stem and needed to come out quickly.  The bulk of my tumour was removed on the 4th Aug 2022.  

During this time,  I had completely lost hearing in my right ear, and my balance was severely affected; I couldn’t walk in a straight line and started using walking sticks to help me get around. 

Before all this started, I was fit and active. I competed in regional Taekwondo competitions, I trained a few times a week at a boxing gym,  and had run the Birmingham marathon a few times.  

The loss of balance and fatigue, had a big impact on my life.  I became sedentary. I started to pile on the weight, which in turn caused its own health issues.  

My road to recovery has been rocky to say the least. A few weeks after the surgery, I caught a horrible cold.  I normally get over these things quickly, but this one was horrible. It was even diagnosed as pneumonia by the doctor.  

My coughing caused a CSF leak, which was incredibly unpleasant and I needed another surgery in December 2022 to close off my ear and seal the CSF leak.  I never felt right after this, and in April 2023 I was re-admitted to hospital and treated for bacterial meningitis.

“My work, who had been incredibly supportive up to that point, decided to let me go.”

I was in hospital for 10 days. In the weeks that followed, my work, who had been incredibly supportive up to that point, decided to let me go.      

All this has had a profound effect on me, physically and emotionally. I’m just not capable of doing things I took for granted before. My family and friends have been incredibly supportive, but only other acoustic neuroma survivors, know what it’s like.  

It’s difficult for people to understand, as most people greet me with “Wow, you’re looking well.”  Little do they know the daily battle I am facing. Even though the bulk of the tumour has been removed, I still live under the shadow that it might start to grow again.  

Hearing and balance had to be sacrificed on my right side to get at the tumour, something that will affect me for the rest of my life.  

It’s now nearly a year since my initial operation. I’m starting to climb out of that sedentary rut that I find myself in.  Sara’s story, and others from the BANA community have been a real for inspiration for me.  Your body can learn to adapt to the new normal. I have never done anything like this trip before. If I can make the summit, it will prove to myself that I can do it, and maybe be an inspiration to others that they can do it too.  That would be amazing.  

I have a long way to go, but I’m feeling determined to get there.”

Written by Mark Ackroyd.

The Beyond Recovery project aims to support individuals like Mark, through the challenging time that is recovery.

In 2024, I will be taking a group of brain tumour survivors, to Toubkal,

If you can support the Beyond Recovery project, you will be helping to provide people like Mark with a life-changing opportunity that will give focus and help him to reinvent his “new normal”.

To make a donation, however small, please visit the link below.

Thank you for your support.

Published by Sara C

It's hugely important to raise more awareness of brain tumours and the implications they can have on patients' lives. I aim to help to create wider understanding of the effects brain surgery and a diagnosis can have on an individual and their families on a emotive level through my own experience.

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