Acoustic Neuroma Recovery: Susan’s Journey Beyond Treatment
When something didn’t feel right
Susan’s story began with symptoms that were easy to dismiss at first.
There were changes in balance, swallowing difficulties, and a growing sense that something was off. Like many people diagnosed with rare brain tumours, the signs were subtle before they became impossible to ignore.
Eventually, further investigations revealed the cause: an acoustic neuroma.
What followed was not only a diagnosis, but a life-changing journey through surgery, recovery, and learning how to rebuild life afterwards.
Understanding acoustic neuroma
Acoustic Neuroma, also known as a vestibular schwannoma, is a usually non-cancerous tumour that develops on the nerve connecting the inner ear to the brain.
Although benign, it can still have a significant impact because of where it grows.
Common symptoms can include:
- Hearing loss
- Tinnitus
- Balance problems
- Dizziness
- Facial weakness or numbness
- Swallowing difficulties
- Fatigue
Treatment may involve regular monitoring, surgery, or radiotherapy depending on the size and location of the tumour.
Receiving a diagnosis during an uncertain time
Susan’s diagnosis came during the COVID pandemic, adding another layer of stress to an already overwhelming situation.
Like many patients during that period, appointments felt different. Communication was harder. Support systems were disrupted. The usual comfort of having people beside you at consultations was not always possible.
Even without a pandemic, receiving news of a brain tumour can feel isolating.
With one, it became even harder.
Surgery and immediate recovery
Susan underwent surgery to remove the tumour.
As with many acoustic neuroma patients, treatment was only the beginning of the story.
Recovery brought new challenges:
- Changes to hearing
- Balance issues
- Tiredness
- Anxiety
- Adjusting physically and emotionally to what had happened
This is something many people don’t realise until they live it themselves.
The goal may be tumour removal—but recovery often takes far longer than expected.
Life after treatment
Susan’s journey highlights an important truth: surviving treatment and recovering from it are not the same thing.
Even after surgery, many people are left navigating symptoms that continue to affect everyday life.
For Susan, this meant learning how to adapt to a new normal.
There were practical changes, emotional changes, and moments of frustration. But there was also determination.
Instead of allowing recovery to become something she endured alone, she chose to turn it into something meaningful.
The Beyond Recovery Project
From her own experience came The Beyond Recovery Project—a space created to support others adjusting to life after treatment.
Because while diagnosis and surgery often receive attention, the months and years afterwards can feel far less visible.
Many people are left asking:
- Why don’t I feel like myself yet?
- Why am I still struggling?
- Why does recovery feel so slow?
- Why did nobody prepare me for this part?
Susan recognised that gap and decided to help fill it.
The Beyond Recovery Project focuses on connection, understanding, and reminding people that they are not failing if recovery takes time.
Why stories like Susan’s matter
There is often pressure to “bounce back” after illness or surgery.
But recovery is rarely neat.
It can be slow, unpredictable, emotional, and exhausting.
Susan’s story gives voice to that reality. It reminds others that healing is not a straight line—and that it is okay to need support long after treatment has ended.
Life now
Today, Susan continues to use her experience to support others walking a similar path.
What began as a deeply personal journey has become something bigger: advocacy, awareness, and community.
Sometimes the hardest chapters of life can become the very thing that helps someone else through theirs.
What Susan’s story reminds us
Susan’s experience is about:
- Listening to your body when something feels wrong
- Understanding that benign tumours can still have major impact
- Knowing recovery can be longer than expected
- Asking for help when you need it
- Using lived experience to support others
Her story is not just about treatment.
It is about everything that comes after.
