A Diagnosis That Changed Everything
There are moments in life that divide everything into before and after.
For this brain tumour survivor, that moment came in September 2021, when an MRI scan revealed a tumour on her brain.
What had started as dizziness, balance problems, swallowing difficulties, ear pain and hearing loss eventually led to a diagnosis of an acoustic neuroma, also known as a vestibular schwannoma.
At first, she had tried to explain the symptoms away.
She went to the gym often, so she thought maybe she was overtraining. She had a dull ache across her eyes, so she wondered if she needed an eye test. She had pain near her ear and down the side of her neck, so she thought it might be posture from sitting at her desk.
But then she started to lose hearing in her right ear.
That was when she knew she needed to speak to a doctor.
Symptoms That Were Easy to Dismiss
Before diagnosis, her symptoms built up slowly.
She felt dizzy. Her balance was off. She felt sick. She had a dull ache across her eyes and pain near her ear and neck.
One of the strangest symptoms was the feeling of having a tablet stuck in her throat.
It would wake her in the early hours of the morning and make swallowing painful.
At first, she wondered if it could be heartburn or if she had taken a tablet that had not gone down properly. Like so many people do, she searched for ordinary explanations.
Eventually, when the hearing in her right ear started to go, she contacted her GP.
Because this was during COVID, the appointment was over the phone. Without being able to examine her ear properly, she was diagnosed with an ear infection and given antibiotics.
When the symptoms did not go away, she was given stronger antibiotics.
By the third time, she knew something was not right.
“I don’t feel myself.”
She was eventually seen in person and referred to ear, nose and throat. Her balance was checked, and she was sent for an MRI scan.
That scan changed everything.
The Scan That Led to A&E
After the MRI, she even joked with staff.
“Did you find anything? Did you find a brain?”
But instead of laughing it off, they asked her to take a seat outside.
Soon afterwards, she was taken somewhere quiet. She was told they were not the consultant, but they thought they may have found something.
She was handed a CD of her MRI scan and a letter, and advised to go straight to A&E.
At first, she still tried to play it down.
COVID was putting huge pressure on the NHS, and she felt she was not as unwell as the COVID patients who needed urgent care. She also had children to pick up from school.
“I need to pick up the boys from school. I’ll go later.”
She did go to A&E later that evening. Normally, she was told, they may have kept someone in hospital after seeing a scan like hers. But because she looked well, and because of COVID, she was sent home while a consultant reviewed the MRI properly.
A few days later, she was called in for a face-to-face meeting.
That was when the diagnosis became official.
Listen to Susan tell her story in full in the Aunty M Brain Tumours Talk Show interview below, or keep reading for the written version
Telling Her Family
The diagnosis came on a Friday.
Her boss was supportive and told her to take the rest of the day off and do what she needed to do. She spent time researching on trusted websites, trying to understand the diagnosis and prepare herself to tell the people she loved.
“I wanted to make sure that I had it correct in my head, because I knew that if I panicked, they’d be panicking as well.”
Her husband was away with friends when she received the news.
She had to decide whether to tell him straight away or wait until he got home.
In the end, she phoned him.
He immediately offered to come home, but she told him to stay where he was.
“I think we’ve got a couple of tough months coming up. So stay out there with your friends and just live life, because it’s going to be a bit tough when you get back.”
That weekend passed in a blur.
She had two boys at home, so she tried to keep life normal for them while quietly carrying the weight of what she had just been told.
Fluid on the Brain and Having a Shunt Fitted
Soon after diagnosis, she met her neurosurgeon.
The tumour was large, and surgery was the only option. But before the tumour could be dealt with, doctors needed to treat the fluid on her brain.
If left untreated, fluid on the brain can become life-threatening.
The plan was to fit a shunt first.
A shunt is used to drain excess fluid from the brain to another part of the body, in her case the stomach.
She was told the shunt would be there for the rest of her life, but that she should still be able to carry on doing the things she wanted to do.
The operation took around two hours, and she stayed in hospital for a couple of days.
The difference was almost immediate.
Before the shunt, she was asked to stand with her arms out and close her eyes. She would fall to the right, the same side as her tumour.
Within 24 hours of having the shunt fitted, her balance had improved dramatically.
“It was amazing.”
A Nine-Hour Brain Surgery
In February 2022, she had surgery to remove the acoustic neuroma.
The operation lasted nine hours.
Surgeons successfully removed 95% of the tumour. The remaining 5% was wrapped around her facial nerve, so they decided to leave it rather than risk permanent facial palsy.
She now has regular MRI scans to monitor the remaining tumour.
If it grows in the future, radiotherapy may be considered. For now, she has been told it is not life-threatening.
Life After Acoustic Neuroma Surgery
Although most of the tumour was removed, life after surgery has brought lasting changes.
She is now profoundly deaf in her right ear, which was the side of the acoustic neuroma. She also lives with tinnitus, dry eye on the right side, no taste on the right side of her tongue, and fatigue.
The loss of taste came as a surprise.
After surgery, a nutritionist gave her a strawberry yoghurt to check whether she could swallow safely. She was asked what flavour it was.
“Vanilla.”
It was another reminder of how much the nerves had been affected.
Chocolate also tastes different now.
“Chocolate tastes like cardboard. Trust me, it doesn’t stop me from eating it.”
Living With Tinnitus and Single-Sided Deafness
Tinnitus is now part of her everyday life.
She described it as being like the ringing you get after leaving a nightclub or loud concert, except it never fully goes away.
It is not always loud, but it is always there.
Quiet places can be difficult because, instead of silence, all she hears is the noise in her own ear.
Single-sided deafness has also changed how she experiences conversations.
If more than three people are talking, it becomes hard to follow what is being said. Voices merge together. The brain is trying to listen, understand the conversation, and filter the tinnitus at the same time.
That can be exhausting.
Claire shared that she experiences something very similar. When too many people are speaking at once, she often has to leave the room and come back when things feel calmer.
It is one of those effects that people do not always understand unless they have lived it.
Anxiety, Noise and Overwhelm
Before her diagnosis, she did not think of herself as an anxious person.
That changed after surgery.
Noisy environments, busy places and work meetings can now bring anxiety. Sometimes her brain does not react as quickly as it used to. Sometimes her focus is not as sharp. Sometimes the noise and pressure are simply too much.
During recovery, her husband became her comfort blanket.
Everywhere she went, he came with her. She would hold his hand, even though that had not been like her before.
Over time, she has tried to push herself gently out of her comfort zone.
Home feels safe. Outside can feel unpredictable.
But she has worked on doing things she would have done before, even if they take longer now.
Sometimes that means sitting in the car for ten minutes, listening to calming music and taking deep breaths before going inside.
Those small moments matter.
“You have to celebrate those little things because they’re little wins.”
Trusting the Small Wins
Recovery after a brain tumour can make ordinary things feel huge.
After her operation, being able to walk from one end of the garden to the other without falling over felt like a major achievement.
It sounds simple, but it was not.
It was progress.
She spoke about how easy it is to think, “I used to be able to do that.”
But the person before surgery and the person after surgery are not always the same.
Recovery means learning to recognise small steps as real victories.
A short walk.
A calmer appointment.
A difficult conversation managed.
A noisy place tolerated for a little longer than before.
Those things count.
The Support Gap After Treatment
When asked whether she had found support through the NHS after treatment, she said, unfortunately, not.
She was careful to say she did not think this was the fault of the NHS. Her physical wounds healed well and quickly, but mentally, recovery took much longer.
She had six counselling sessions through Macmillan, which helped. But after treatment, she felt there was a gap.
Once surgery is over and the wound has healed, there can be an assumption that the person is recovering and moving on.
But the emotional recovery is often much longer.
Her surgeon told her:
“This is a marathon and not a sprint.”
At the time, she did not fully understand what he meant.
She thought the tumour would be removed, the wound would heal, and life would return to normal.
But brain tumour recovery does not work like that for everyone.
Finding Other Survivors Who Understand
One of the things she felt was missing was the chance to talk to other brain tumour survivors.
Charities can be very helpful for treatment information, understanding options and learning about brain tumours. But there is something different about speaking to someone who truly understands the lived experience.
Someone who understands that fatigue is not laziness.
Someone who understands scan anxiety.
Someone who understands tinnitus, overwhelm, hearing loss, balance problems and the grief that can come with losing the old version of yourself.
That need for connection became part of what led her to The Beyond Recovery Project.
The Beyond Recovery Project
The Beyond Recovery Project is a non-profit community created for brain tumour survivors.
It was set up by Sara Crosland, alongside others who wanted to help survivors feel supported, motivated and less alone.
Sara had the same type of tumour, and her story had been a source of inspiration. After connecting through social media, a friendship grew.
Together, they recognised a gap for people after treatment.
The project is about helping survivors set goals, regain confidence and connect with others who understand.
For some people, that might mean going for a walk.
For others, it might mean taking part in a bigger challenge.
In June, a small team of brain tumour survivors plan to climb the Atlas Mountains.
It is a huge challenge, but it gives the group focus and purpose.
“It helps us all realise that we can still achieve things.”
It Is Not a Race
One of the most important messages behind the Beyond Recovery Project is that it is not about competition.
It is not about being the fastest, the strongest, or the fittest.
Everyone has different challenges.
Some people have balance issues.
Some people use walking poles.
Some people live with fatigue.
Some people have hearing loss.
Some people need more rest.
The point is not to race.
The point is to support each other.
“It’s just getting to the top of that mountain and screaming, if we want to, that we’ve achieved it.”
The project also hopes to organise retreats and camps where survivors and families can connect.
Because brain tumours do not only affect the person diagnosed. They affect partners, children, friends and families too.
As she said, when she had her nine-hour operation, she was asleep.
Her loved ones were the ones waiting, worrying and pacing outside.
That ripple effect matters.
Important Takeaway
This story is a reminder that acoustic neuroma symptoms can be easy to dismiss at first.
Dizziness, balance problems, hearing changes, swallowing difficulties, tinnitus and fatigue can all have many possible explanations. But when symptoms persist, it is important to keep asking questions and seek medical advice.
It is also a reminder that:
- Recovery can be long and deeply personal
- Physical healing does not always mean emotional recovery is complete
- Fatigue after a brain injury is real
- Tinnitus and single-sided deafness can be overwhelming
- Support from other survivors can make a huge difference
- Small wins matter
- Life after a brain tumour may be different, but it can still be meaningful
Understanding Acoustic Neuroma
An acoustic neuroma, also known as a vestibular schwannoma, is a usually non-cancerous brain tumour that grows on the nerve connecting the inner ear to the brain.
Because this nerve is involved in hearing and balance, symptoms can include:
- hearing loss, often in one ear
- tinnitus
- dizziness
- balance problems
- headaches
- facial weakness or numbness in some cases
Some acoustic neuromas grow slowly and may cause subtle symptoms at first. Others are found when they become large enough to press on nearby structures.
Every person’s experience is different.
Some people are monitored with regular scans. Some need surgery. Some may need radiotherapy. Many live with ongoing effects after treatment.
If You Have Recently Been Diagnosed With an Acoustic Neuroma
If you have found this after a recent diagnosis, please know you are not alone.
The early days can feel frightening and overwhelming.
You may be trying to understand medical words you have never heard before. You may be worrying about surgery, treatment, scans, family, work and the future.
Try to take things one step at a time.
It may help to:
- write questions down before appointments
- take someone with you if you can
- ask your medical team to explain things in plain language
- use trusted brain tumour charities for information
- connect with others who understand
- be gentle with yourself
You do not need to know everything today.
The next step is enough for now.
Where to Find The Beyond Recovery Project
The Beyond Recovery Project supports brain tumour survivors and their families through community, connection, goals and shared lived experience.
You can find out more through:
- Website: thebeyondrecoveryproject.org
- Instagram: The Beyond Recovery Project
They welcome contact from brain tumour survivors, families and supporters.
Whether you want to join an event, follow their journey, donate, sponsor, or simply speak to someone who understands, they encourage people to reach out.
Sometimes you just need someone who gets it.
Sometimes you just need a hand to hold.
And sometimes, you need to know that you are not walking this road alone.
DISCLAIMER: This information is for general awareness only and is not a substitute for advice from your own medical team. Aunty M Brain Tumours shares personal experiences and supportive information, not individual medical guidance.
