The words brain tumour were first mentioned to me at the age of 26.  Sudden hearing loss in my right ear prompted a referral to ENT.  After a hearing test the ENT consultant said the words, “I’m afraid I have bad news, you have complete hearing loss in the right ear, the hearing nerve is completely damaged, I think you may have a benign brain tumour called an Acoustic Neuroma”.  Not at all what I expected and quite a shock! 

I had an MRI a week later and to my relief came back as normal, the hearing loss blamed on a virus.

7 years later, shortly after my youngest was born I started to have some new symptoms.  I had a few episodes of vertigo where the room would suddenly start spinning and I would have to sit still until it passed.  This was scary, especially one day when it happened on the stairs, luckily I wasn’t carrying Scott, my newborn baby.

Other symptoms also started, blurred vision, balance/co-ordination issues, weakness in my limbs, fatigue, difficulty concentrating.  A visit to my GP prompted a referral to a neurologist.

An MRI shortly after seeing the neurologist confirmed a 13mm Acoustic Neuroma brain tumour.  This suddenly explained the hearing loss nearly 8 years prior.  It also explained other things, like when I lost my balance and fell head first down a flight of stairs around the same time as the hearing loss, thankfully only ending up with a broken wrist!  

It was decided by my consultant team that I should be placed on “Wait & Watch” as the tumour was small and may not grow anymore rather than risk surgery.  So a scan was planned for 6 months time. 

It was difficult getting on with life as normal knowing it was there in my head but I did my best.  Nausea due to the balance issues became a near constant companion.  During this time whilst training for a marathon, my balance issues contributed to a fall and I broke my tibia and fibula in 3 places near my ankle on 31^st Dec 2009, I had surgery a few days later to patch me up with a metal plate and a few screws and bolts.  

In April 2010, my 6 month MRI showed more tumour growth, so with my increasing symptoms, the fact that my hearing and balance nerves were already dead and at my relatively young age of 34, it was decided I should go for surgery.

I had my 11.5 hour surgery on the 20^th September 2010 at the Royal Victoria Hospital in Belfast.  I was lucky to initially make a good recovery, as my balance and hearing nerves were already destroyed by the tumour.

I had no issues with walking etc soon after surgery.  My facial nerve had been slightly affected and I ended up with an ulcer on my cornea due to my eye not closing properly at night. Thankfully the ulcer healed up and eye sight came back to normal.  I taped my eye closed at night for a month or so and had to use plenty of eye drops and ointments to deal with the severe dryness, an after effect of the surgery.  

Recovery from surgery was a long slow process, the neuro-fatigue meant returning to my normal work hours was difficult. It took 18 months to get back to normal work hours.  My GP recommended getting out on plenty of walks and this helped immensely.  I decided to start training again for that marathon and finally completed the Dublin Marathon in Oct 2014.

An MRI after surgery revealed a very small remnant. This was monitored closely and remained stable for 10 years.  I had learned to manage my symptoms which were mainly balance problems, fatigue, nausea and trigeminal neuralgia. I increased my hours at work and began to study for my accountancy exams. Life was good.  Then out of the blue on the 4th January 2021 I got a phone call to say that my latest scan showed that the tumour was growing again.  I was devastated.  It was decided that whilst it was still small I would have a dose of radiation by a Gamma Knife Machine (Stereotactic RadioSurgery).   

I had the Gamma Knife treatment in St James’s in Leeds on the 29th June 2021.  The procedure was painless, apart from the fitting of the frame to the head. 

Unfortunately I found recovery nearly as difficult as after surgery, the fatigue was crippling.  My neurosurgeon believes it was due to me having had the prior surgery as usually it’s an easier recovery. 

Returning to work was made difficult with fatigue, concentration and cognitive difficulties. My MRI 18 months after treatment showed that the tumour had more than doubled in size and that I needed another scan 6 months later to determine the next course of action. That was a very stressful time, I just thought I’m never going to get my life back and the fear of needing surgery again was unbearable. 

At this stage I was dealing with more headaches and new symptoms like hemi-facial spasms.  It was such a relief when the 24 month scan showed no significant change and I wouldn’t need to be scanned for another 12 months.

After the stress and hopelessness of these past few years I felt I needed a new challenge to get my life back on track.  I had heard about The Beyond Recovery Project and Team Toubkal and was delighted when I got a place on the team. 

I felt this was my chance to turn my life around. I had felt lost and depressed after the sudden regrowth 10 years post surgery and then devastated when it looked like the radiation hadn’t worked.  I had become unfit after the radiation and lost the motivation to do anything about it, not knowing if I’d ever be free to enjoy life fully again, without worrying if the next scan would indicate the need for surgery again.

Training for Toubkal is definitely one of the most difficult things I’ve ever done, but the support from The Beyond Recovery Project team has been phenomenal. Whether it’s just cheering each other on, sharing balance exercises or tips on dealing fatigue. 

Living with a brain tumour can be a lonely place but being involved with The Beyond Recovery Project has been life-changing.  Facing a challenge like Toubkal with others who have had brain tumours and have had similar difficulties is an amazing opportunity. 

The physical and mental benefits are plenty.  I now know that whatever my next scan in July reveals, I’ll be fit to cope, knowing I’ve conquered the highest mountain in North Africa in June and that I’ll have the support of The Beyond Recovery Team no matter what.  

The Beyond Recovery Project is a not-for-profit community interest company which supports brain tumour survivors like Wendy.

It is funded entirely by donations and run by volunteers. Please support if you can, so that we can continue to provide this support to the brain tumour community.

www.gofundme.com/f/beyond-recovery

“I had been struggling with back pain for a while which prompted me to pay for a private MRI which found my brain tumour.

I’d try all kinds of professional services including a chiropractor, a physiotherapist and osteopath. I was always an active person, I regularly went to the gym and participated in classes but had to give this up when my balance became off and my leg kept getting stuck in one position and took a while to regain full movement.

By November 2021, the experts were perplexed. As was the GP. No matter the work they did on my body or homework I did on their recommendation, I was still struggling. I started to feel dizzy if I bent forwards and I could only walk a short distance as my leg locked and I’d have to drag it along. It was embarrassing.

By the time Christmas arrived, I wasn’t feeling myself. My mum died two months earlier, and I was dealing with health concerns that didn’t seem to be improving.

This continued for months. In April 2022 I was alarmed by a change in the appearance of one side of my face. It seemed to droop and I felt as if I was drooling. I kept this to myself, not telling my husband my concerns and I wasn’t sure that change in my face was noticeable to other people.

That’s when I booked myself in for an MRI scan which I paid for. The doctors asked my symptoms and carried out tests as I was laying down as well as balancing. As I walked across the room for one part of the examination, he suggested I have a scan of my full spine and my head.

At this point, I still had no idea that there was anything going on in my head. I just wanted the pain in my back to go away.

Results came through a week later by an online video consultation. I could see the face of the specialist, he looked almost worried. He told me that there wasn’t a problem they could see in my spine, but I had a tumour on my brain.

In that moment everything felt surreal. I ignored the fact I had just been diagnosed with a brain tumour and instead asked what they could do about my back.

The tumour was a slow-growing petroclival meningioma, they could tell due to its size. The chances are that it had been growing for the last 15 years.

I expected to wait months for surgery due to a backlog of bookings. I was told before the operation, it’s likely I would lose mobility of my legs and would never regain movement due to nerve damage. They said without intervention I could survive nine months because the placement and size of the tumour was causing extreme pressure within my brain. This was in May and my operation was expected in November.

My husband was crying at this revelation as I remained stone-faced and in utter shock.

I started to write birthday cards for my two boys who were going to celebrate milestone birthdays that year. I recorded video messages for them beyond the grave and wrote birthday cards for years to come.

My husband and I took walks together where we would talk about how we would adapt the house and bring a bed downstairs for me to sleep in. We vented our frustration and anger at the situation. It was truly awful.

A month later, in June, I had a call from the surgeon who told me they had space available in two weeks’ time. We were due to go on our ‘last’ family holiday together to make memories which we cancelled. I had surgery at Southampton Hospital. Four surgeons worked as a team during the 16-hour operation. When I came out, I couldn’t walk, I couldn’t even move my legs. I was unable to swallow, one of my eyes was closed and I struggled to see clearly with my other eye. I was very confused and part of my skull was replaced with a titanium plate.

Before I went into the operation, I did a lot of reading to help me prepare my mental state and I read a lot about visualisation. I don’t know how or why but in my drowsy state I asked the nurse to move my legs. I wanted to know if I could feel them. As I couldn’t see anything, I said ‘okay you can do it now’ not realising she already moved them but I didn’t feel anything.

Everyday, they moved my legs for me, multiple times a day and after two weeks I felt a tiny sensation in my thigh.

I visualised getting out of bed, standing, and walking to the door and out of the ward.

Within days, my eyesight came back and within weeks I was living out my visualisation, I was walking, and was allowed to go home.

I deleted the videos I had made for the boys and burned the birthday cards I didn’t think I’d get to see them open. The future was much more hopeful.

My depth perception and general groggy days caused me to have a few falls and incidents at home. I paid for private treatments including oxygen therapy to help accelerate my recovery.

I live with permanent double vision in my left eye and my eyeball doesn’t move as the rotating nerves were severed during surgery. They can take two years to grow. I currently wear a patch over this eye and have had a special contact lens made to wear on occasions that I don’t want to wear the patch.

My leg no longer gets stuck and I’m currently working on retraining my muscle memory and working on improving stamina. I’m taking swimming lessons to help improve my neuro pathways, working on my physical being as best I can.

I want to empower healthcare professionals with knowledge about brain tumours and to do this, we need to invest in research. Having gone through so much, I don’t want anyone else to go through this.”

Isra will be joining us in June 2024, as we climb Mount Toubkal, the highest mountain in North Africa. We are so proud of her!

The Beyond Recovery Project is a not-for-profit community interest company which supports brain tumour survivors like Israr.

It is funded entirely by donations and run by volunteers. Please support if you can, so that we can continue to provide this support to the brain tumour community.

www.gofundme.com/f/beyond-recovery

“In September 2021, I was diagnosed with an Acoustic Neuroma brain tumour after having a series of symptoms present themselves during COVID.  Looking back, I can now see that my ‘companion’ was letting me know he was there, my balance was off, I was feeling more tired and dizzy.  I didn’t put them together… blamed it on over training at the gym (I was a regular 4/5 x a week), being busy with 2 boys and just a busy lifestyle, especially when COVID hit.

I then started to experience problems swallowing and hearing on my right side was reducing.  I ignored it for a while, but when I was experiencing pain down my neck and not swallowing properly was keeping me awake, I decided to take the plunge and speak to my doctor.

A suspected ear infection and 3 doses of paracetamol later, I was referred to ENT at Southampton General Hospital.  Significant hearing loss was confirmed and they recommended me for an MRI, this was how they found my tumour.  It was 3.5cm. In addition to this, I had Hydrocephalus (a build-up of fluid on the brain – twice the amount there should have been).  If left untreated, this can be fatal.

Things moved quickly, and it took 4 days from initial diagnosis to seeing a neuro surgeon.  Everything was explained and their first priority was to deal with the Hydrocephalus. 

My first operation to have a shunt fitted was 7 days after.  I had a 2-hour operation where a valve was fitted into my brain, allowing the fluid to drain from my brain through a pipe down into my stomach.  This ensured that the pressure it was placing on my brain was removed.  The surgeon was happy with how everything went and a date was made for the bulk of my tumour to be removed.

Unfortunately, due to COVID, my operation had to be rescheduled a couple of times, but on 1^st February 2022, I underwent a 9-hour surgery where the wonderful NHS neuro surgeons were able to remove 95% of it.  The 5% remaining was near my facial nerve and for this reason, they decided not to remove that last part so as to avoid me having permanent facial palsy.

Following my operation, I completely lost the hearing in my right ear, along with sense of taste on the right side of my tongue and a lack of tear production.  All things that 19 months later, I’m still trying to manage and come to terms with.

Before my diagnosis, I was a regular gym bunny …. Cardio Bootcamp, strength training and pole dancing (all in one week).  However, since the operation I have struggled to get back and maintain the energetic lifestyle I once did.  The road to recovery hasn’t been easy and continues every day.

The recovery is not just physical but it’s also mental.  A lot of people believe that the recovery aspect is following treatment and the healing of the wound.  Friends and family have been a massive support and continue to be, however, only other Acoustic Neuroma patients truly know what it’s like. 

Every MRI scan or CT scan I have, anxiety kicks in.  Every noisy and busy environment I’m in or going to, anxiety kicks in.  Every meeting where I will need to make an instant decision, anxiety kicks in. 

“…things didn’t work out and unexpectedly they let me go just before the end of my probation period.”

This has had a knock on effect with my job.  The company I was working for when I was diagnosed were fully supportive of both me and my family, and allowed me to go back at my own pace understanding the needs that I had. However, due to a change in circumstances I found myself with a new role earlier this year.  Unfortunately, although having been upfront about my hidden disabilities during the interview stage, things didn’t work out and unexpectedly they let me go just before the end of my probation period. 

This was the first time a company had ‘let me go’ and it has been difficult to deal with, my confidence and self-esteem hitting rock bottom (again), so when Sara approached me and invited me to be a part of The Beyond Recovery Project, I immediately knew it was something that I needed to get involved with.

“It’s been 19 months since my main operation and I’m still learning how to be ‘me’”

It’s been 19 months since my main operation and I’m still learning how to be ‘me’ and embrace the ‘new normal’. The passion, belief and inspiration of Sara and others within The Beyond Recovery Project team is infectious; this trip is something I’ve never done before and before my diagnosis wouldn’t have even dreamed of. However if I am to be thankful of my ‘companion’ for anything, it has given me another lease of life and the word CAN’T doesn’t now appear in my vocabulary.”

The Beyond Recovery Project is a not-for-profit community interest company which supports brain tumour survivors like Sue.

It is funded entirely by donations and run by volunteers. Please support if you can, so that we can continue to provide this support to the brain tumour community.

www.gofundme.com/f/beyond-recovery

“I was 40 when I was diagnosed with my Acoustic Neuroma. It was 3.5cm in diameter. I had been experiencing quite a few symptoms for months; like most men, I ignored them for as long as I could.

My hearing was slightly off on the right side. My doctors said there was nothing wrong. Then my balance was affected.

My surgery was on 22nd May 2017, the same day as the Manchester Arena bombing. I woke up in recovery, where there was a flurry of activity, as doctors and nurses treated the injured and tried to find high dependency beds for the unexpected influx of patients.

I told staff to go and treat those who had been brought in, to let them have my bed, but they said I was still their priority. I was impressed with their compassion and professionalism, as medical staff who were off duty, or on leave, came back into the hospital to help.

Surgery to remove the tumour had been successful, but it had left me with grade 6 facial palsy. I also lost my hearing and balance nerve on my right side.

At first, I didn’t think I needed help, but when I eventually got back to my work as a joiner, the only job I’d had since leaving school, I began to realise just how much I did.

Fatigue has been one of the biggest issues I’ve had to deal with since. It impacted my ability to work and I found it a real challenge. I struggle to make it through the day without a power nap.

“Feeling part of a community is really important to me.”

I have also had issues with my eye. Because it could no longer close on its own, due to the damage caused by surgery, I had to have platinum weights implanted into my eyelid. It is constantly dry, and so my life is dictated to by an alarm on my phone, which reminds me to put drops in it every 2 hours. If I don’t do this, it can become very painful, with a risk of developing corneal ulcers.

Recovery has been far from easy. Often, people with Acoustic Neuromas are dismissed as they are classed as a benign, or low grade brain tumour. However, something that is as life-changing as this is far from harmless.

Single sided hearing loss is another challenge we are faced with after this surgery. I have had further surgery to have a Bone Anchored Hearing Aid (BAHA) device fitted.

I now have a titanium post screwed into my skull and a sound processor which clips onto it. This picks up sound on my deaf side and conducts it through the bone of my skull to the cochlear nerve on my unaffected side.

It helps a little, but there are still many situations when this can be more of a hindrance. Trying to hear in noisy environments is very difficult, and this also impacts on my fatigue levels. I often suffer from a ‘noise hangover’ after being somewhere really loud! This can cause many people like me to become what might appear as antisocial, but we consider it as self preservation!

Recently, I have found myself caring for my elderly parents, especially my dad who is not in good health. Trying to juggle this with managing fatigue levels on a daily basis is a real challenge at times.

Feeling part of a community is massively important to me. It is reassuring to be able to speak to others who are experiencing the same difficulties, as well as meeting those who inspire me. For this reason, I am really looking forward to being part of the Beyond Recovery team.

This project is really important, as it has given me something to focus on other than the 2 hourly phone alarm and the day-to-day struggles that life presents these days. I cannot begin to describe just what it means to me to be a part of something like this. I have never taken on anything like this before.

Getting to the summit really will be life-changing, and a really special experience for everyone.”

The Beyond Recovery Project is a not-for-profit community interest company which supports brain tumour survivors like Andrew.

It is funded entirely by donations and run by volunteers. Please support if you can, so that we can continue to provide this support to the brain tumour community.

www.gofundme.com/f/beyond-recovery

Thank you for your support.

“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 is a not-for-profit community interest company which supports brain tumour survivors like Mark.

It is funded entirely by donations and run by volunteers. Please support if you can, so that we can continue to provide this support to the brain tumour community.

www.gofundme.com/f/beyond-recovery