After doctors dismissed her hearing loss as tinnitus, Stephanie Hilliard learned she had a benign meningioma while pregnant and now lives with lasting effects while fundraising for research
Stephanie Hilliard, 50, from Axbridge in Somerset, thought her hearing problem was just tinnitus. That casual explanation hid something far more serious. An MRI during pregnancy in revealed a slow-growing meningioma — a benign but potentially dangerous brain tumour — and changed the shape of her life overnight.
What started as slight hearing loss and occasional unsteadiness crept into numbness of the face and worsening coordination. At seven months pregnant she sought a second opinion; scans suggested the lesion had likely been present for years, perhaps since her late teens.
Because the tumour sat close to critical brain structures, doctors faced a stark trade-off: operate during pregnancy with risks to mother and baby, or wait and risk further neurological damage. A multidisciplinary team — neurosurgeons, obstetricians and radiologists working together — steered the plan toward stabilising Stephanie and timing intervention to minimise harm.
Surgery removed roughly 60% of the tumour to protect vital function. That partial resection reduced the chance of immediate catastrophic injury but left a residue that requires lifelong monitoring. Her postpartum months were tough: fatigue, balance troubles and a slow rehab process that overlapped with looking after a newborn and her other children. Physiotherapy, hearing support and careful symptom management became everyday necessities.
Setbacks followed. New vertigo episodes and intermittent facial numbness triggered fresh scans and shifted the treatment course. A few years later scans showed regrowth; radiotherapy was added, yet some symptoms — chronic fatigue, ongoing balance impairment — have persisted. Those invisible limitations forced Stephanie to leave paid work and become a full-time carer for one of her children, with the family taking on the emotional and financial strain that often accompanies long-term survivorship.
Her experience exposes larger problems in the system. Too often, early neurological symptoms are dismissed as minor until they cluster or worsen, by which point surgical choices are more fraught. Faster access to imaging, clearer red-flag checklists for clinicians, and better links between community reports and specialist triage could reduce delays and narrow those wrenching trade-offs. Equally important is coordinated post-treatment support: accessible rehabilitation, flexible employment policies and social services that recognise hidden disabilities.
Stephanie hasn’t retreated from public life. She channels her energy into campaigning and fundraising for Brain Tumour Research, turning personal hardship into a push for better monitoring, kinder treatments and practical rehabilitation trials. Her month-long challenge — walking 10,000 steps every day in February — combines recovery with visibility, making the daily reality of brain-tumour survivors tangible for donors and policymakers alike.
Patient-led advocacy is changing the research landscape. Grassroots fundraising, digital campaigns and community networks are helping direct resources toward translational studies and patient-centred outcomes — not just survival statistics, but quality-of-life measures such as fatigue management and balance rehabilitation. Letty Greenfield, community fundraising manager at Brain Tumour Research, says stories like Stephanie’s show how a single diagnosis ripples through households and why charity-funded studies into gentler, more effective treatments matter.
There are clear practical steps for health services, researchers and employers: – Expand and standardise triage pathways so that symptoms like new hearing loss plus facial numbness or balance problems trigger timely imaging. – Build multidisciplinary teams for rapid decision-making when tumours are found in pregnancy or near critical brain areas. – Invest in coordinated rehab and flexible workplace arrangements to support survivors with hidden disabilities. – Encourage partnerships between researchers and advocate networks to speed trial recruitment and focus studies on outcomes that matter to patients.
Stephanie’s journey — from misattribution and diagnosis, through surgery, recurrence and ongoing management — is a reminder that benign tumours can still have life-changing consequences. Her campaign reframes lived experience as a research resource and a call to action: with better systems, the next family facing a similar warning sign won’t have to shoulder the same uncertainty alone.
