It features a presentation by Michelle Gillespie, National Operations Director, ANAC.
What is an Acoustic Neuroma?
An acoustic neuroma (AN), also called a vestibular schwannoma (VS), is a rare, benign (non-cancerous) brain tumour. It grows slowly on the hearing and balance nerve (the eighth cranial nerve), which connects the inner ear to the brain.
Although not cancer, the tumour can cause serious problems as it grows. It may press on nearby nerves—affecting hearing, balance, and sometimes the face—or even push on the brain if left untreated.
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Causes of Acoustic Neuroma
For most people, the cause of an acoustic neuroma is unknown. These tumours usually occur sporadically, without any clear genetic or environmental trigger.
In rare cases, however, acoustic neuromas develop as part of a genetic condition called Neurofibromatosis Type 2 (NF2). NF2 is an inherited disorder that leads to multiple non-cancerous tumours on nerves of the brain and spinal cord, often including acoustic neuromas.
Learn the Signs of Acoustic Neuroma
Acoustic neuromas often develop slowly, and early symptoms can be subtle. The most common signs include:
- Hearing loss on one side – often gradual and sometimes only noticeable in certain situations
- A feeling of “fullness” in the ear – a sense of pressure or blockage
- Ringing or other noises in the ear (tinnitus) – persistent or intermittent sounds such as buzzing, hissing, or whistling
- Balance problems – unsteadiness, dizziness, or vertigo
Other symptoms that may occur include:
- Facial numbness, twitching, weakness, or loss of muscle movement
- Swallowing difficulties
- Changes in taste
- Altered tear production
- Vision changes, including double vision or reduced visual acuity
- Headaches or other pain
- Fatigue or feelings of tiredness
- Brain fog or cognitive changes
Track and Report Your Symptoms
Keeping a detailed record of your symptoms is crucial for early detection and effective management. Consider tracking:
- Onset and duration of symptoms
- Severity (mild, moderate, severe)
- Frequency and triggers
- Changes over time
Why it matters:
- Helps your healthcare provider identify patterns that may indicate the presence of a tumour
- For those already diagnosed, tracking symptoms can also help monitor tumor growth or changes over time
- Supports timely referrals for hearing tests or imaging
- Ensures that subtle or intermittent symptoms are not overlooked
- Provides a clear record if you need to see multiple specialists
A symptom diary, smartphone app, or calendar notes can all be effective ways to track changes. Bring this record to appointments—it can make a significant difference in care decisions. For those already diagnosed, tracking symptoms can also help monitor tumour growth or changes over time.
Early tracking and reporting of symptoms—including hearing changes, balance issues, or facial sensations—can help your healthcare provider detect the tumour sooner, which may broaden treatment options and improve outcomes.
Diagnosis
Testing for Acoustic Neuroma
Diagnosis of an acoustic neuroma (AN) often starts with hearing, balance, and vision assessments, depending on your symptoms. The tests performed and the specialists involved may vary based on the type and severity of symptoms.
Who to see?
- Audiologist / Vestibular Specialist – Evaluates hearing and balance issues
- ENT Physician (Otolaryngologist) or Neurotologist – Examines ear, nose, throat, and related neurological structures; coordinates further testing
- Ophthalmologist / Neuro-ophthalmologist – If experiencing double vision or other visual disturbances
- Neurologist – For facial weakness, numbness, or tingling
Types of Tests
Hearing
- Audiogram – Measures hearing across frequencies; identifies unilateral or high-frequency hearing loss. The hearing assessment typically includes:
- Pure-tone audiometry – Measures hearing sensitivity across a range of frequencies to identify unilateral or high-frequency hearing loss
- Speech testing – Evaluates how well you understand speech at different volumes, helping assess the functional impact of hearing loss
- Whispered or tuning fork tests – Simple screening tests sometimes performed by an ENT
Balance
- Electronystagmogram (ENG) / Videonystagmography (VNG) – Records involuntary eye movements (nystagmus) using electrodes or video goggles, assessing how the vestibular nerve and inner ear contribute to balance and eye movement control, and detecting abnormal eye movements linked to vestibular dysfunction from a tumour
Vision/Eye Function
- Visual Field Testing - Checks peripheral vision to identify any blind spots or loss that might result from pressure on the optic pathways
- Fundoscopic / Ophthalmoscopic Exam – Performed when double vision or other visual disturbances occur, to check for swelling of the optic disc (papilledema), which can indicate elevated intracranial pressure
Facial Nerve Function
- Physical exam to check for weakness, asymmetry, numbness, or tingling
- Electromyography/Electroneurography (EMG/ENoG) – Assesses facial nerve function, typically reserved for pre-treatment documentation if acoustic neuroma is diagnosed
When Imaging is Recommended
If abnormalities are detected, your doctor may recommend further imaging, including:
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Computerized Tomography (CT) scan – provides detailed images of bone structures and can help rule out other causes
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Magnetic Resonance Imaging (MRI) scan – an MRI with contrast (gadolinium) is the gold standard for diagnosing acoustic neuromas, giving clear images of the tumor and its relationship to surrounding structures
Neurofibromatosis Type (2)
In some cases, the discovery of more than one tumour may point to a genetic condition called Neurofibromatosis Type 2 (NF2).
NF2 is a hereditary disorder that leads to the growth of multiple non-malignant tumours on the nerves of the brain and spinal cord. These often include acoustic neuromas on both sides of the head (i.e., bilateral), as well as tumours affecting other cranial and spinal nerves.
An NF2 diagnosis brings unique complexities and challenges. Unlike a single acoustic neuroma, NF2 may affect hearing, balance, vision, and other neurological functions at the same time, often requiring more tailored monitoring and treatment decisions.
If more than one tumour is detected, genetic testing is strongly encouraged. Testing can confirm or rule out NF2, help guide treatment, and provide important information for family members.
Treatment Options
1. Watch & Wait (Observation)
- Regular MRI scans and hearing/balance tests
- Immediate intervention is reserved for tumour growth or worsening symptoms
2. Surgery
- Typically performed by a skull-base neurosurgeon, often with an ENT surgeon
- Goal: Remove the tumour while preserving facial nerve function and hearing
3. Radiation Therapy
- Targeted, non-invasive radiation performed under the supervision of a radiation oncologist
- Goal: Stop tumour growth
Living with Acoustic Neuroma
Treatment and recovery look different for each person. Some people experience lasting changes such as hearing loss, balance issues, or facial weakness. Others adjust with time, support, and rehabilitation.
You are not alone. Support is available through healthcare teams, family and friends, and patient organizations like the Acoustic Neuroma Association of Canada (ANAC).
ANAC is here to help. We connect you with trusted information, peer support, and resources to guide you through diagnosis, treatment, and life after an acoustic neuroma. Members have access to expanded resources with detailed guidance on specialists, testing, treatment, recovery and symptom management.
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