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CION Cancer Clinics
Hearing checks in NF2: what they are and why they matter | CION Cancer Clinics
If you or your child has NF2, hearing is watched for life. The benign tumours NF2 causes often grow on the nerves that carry hearing and balance, and regular hearing tests alongside MRI scans catch change before it becomes a crisis. This page explains what each check measures, how often it usually happens, and which change needs a doctor the same day. At CION Cancer Clinics, our oncologists explain what a gene result means for you and your family, and plan the checks that follow.
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Medically reviewed by Dr. Naresh GunduConsultant Medical Oncologist · MBBS, DNB (Internal Medicine), DM (Medical Oncology, AIIMS) · last reviewed September 2026, next review due September 2027
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On this page
- Why does NF2 need regular hearing checks?
- What happens at a hearing surveillance visit?
- How does hearing surveillance change through life?
- The words on a hearing report, in plain language
- Four things families believe about NF2 and hearing
- What can this page not tell you?
- Common questions about NF2 and hearing
The short answer
Why does NF2 need regular hearing checks?
NF2 causes benign tumours called schwannomas, and the most common place for them is the nerve that carries hearing and balance from each inner ear to the brain. As they grow, they press on that nerve and hearing slowly fades. Regular hearing tests, alongside MRI scans, catch that change early enough to act on it.
Hearing tests and scans answer different questions
An MRI shows how big a tumour is. A hearing test shows how well the nerve is still working. The two do not always move together. A tumour can stay the same size while hearing drops, or grow for a while without affecting hearing at all. Your specialist needs both to judge what is happening.
Why timing matters so much
Hearing lost on an affected nerve rarely comes back. Decisions such as starting a drug that slows growth, or planning surgery, depend on seeing the trend while there is still useful hearing to protect. Early warning also gives a family time to prepare, for example by learning lip reading while hearing is still good.
NF2 is now also called NF2-related schwannomatosis. The tumours are benign. The harm comes from where they sit, not from spreading.At the clinic
What happens at a hearing surveillance visit?
A visit usually combines several tests. None of them hurts, and most can be done in one sitting.
The beep test
You sit in a quiet booth wearing headphones and press a button each time you hear a tone. The result is a chart of the quietest sound you can hear at each pitch, for each ear separately. It is the baseline every later test is compared with.
The speech test
You hear words at a comfortable volume and repeat them back. In NF2 this score often falls before the beep test changes, because the pressed nerve struggles to carry clear speech.
What it tells the doctor
- How clearly words come through
- Which ear is the better one
- Whether anything has changed since last time
The brainstem response test
Small sticky pads on the head record the nerve's electrical response to clicking sounds. It needs no answer from the person, so it suits young children who cannot manage a booth test yet.
The MRI scan
This measures the size of each tumour. A dye called contrast is injected into a vein so that schwannomas show up clearly. Young children sometimes need medicine to help them sleep through it.
Bring every earlier report and scan disc to each visit. The change over time matters more than any one result.Not sure whether this applies to you?
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One change that cannot wait
A sudden drop in hearing in one ear, over a few hours or overnight, needs a doctor the same day. Go to an ENT doctor or the nearest emergency department and say the person has NF2. Sudden hearing loss is often treated with steroid medicines, which are thought to work best when started early. Seek help the same day, too, for a new severe headache with vomiting, new double vision, or a face that droops on one side.
Over the years
How does hearing surveillance change through life?
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In childhood, a baseline
When a child carries the family's NF2 fault, or is still waiting to be tested, hearing checks usually start early. The brainstem response test is used until the child can do booth tests.
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Scans are added
MRI of the brain and spine is added during childhood, and sooner if there are symptoms. The first scans set the pattern that later ones are compared with.
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A steady rhythm in adult life
Most adults with NF2 have a hearing test and a scan about once a year. The checks come more often while a tumour is growing or hearing is changing, and may be spaced out after a long stable spell.
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When hearing starts to fall
The team weighs up closer watching, a drug called bevacizumab that can slow some tumours, surgery, or radiation-based treatment, which is used more cautiously in NF2. The choice depends on size, speed and which ear hears better.
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If useful hearing is lost
Hearing aids help while the nerve still carries sound. A cochlear implant may work if the nerve is kept. Where it is not, some centres offer an implant that bypasses the nerve altogether.
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On your report
The words on a hearing report, in plain language
- Vestibular schwannoma
- A benign tumour on the nerve that carries balance and hearing signals to the brain. It is sometimes still called an acoustic neuroma.
- Audiogram
- The chart from the beep test. It shows the quietest sound you heard at each pitch, one line for each ear.
- Speech discrimination score
- How many test words you repeated correctly. It is the best single guide to how useful your hearing is in daily life.
- ABR
- Auditory brainstem response. The test with pads on the scalp that records the nerve's signals without needing an answer.
- Contrast
- A dye, usually gadolinium, given into a vein during MRI so that tumours stand out from the surrounding tissue.
- Auditory brainstem implant
- A device placed on the hearing pathway in the brainstem. It is used when the hearing nerve itself can no longer carry sound.
Commonly believed
Four things families believe about NF2 and hearing
"My hearing seems fine, so I can skip this year's test."
Hearing in NF2 often fades so slowly that people adapt without noticing. The speech test can pick up a change before you do. A skipped year may be the one where the trend first showed.
"The tumours are benign, so they do not need watching."
Benign means they do not spread. They can still press on nerves and on the brainstem, and in NF2 that pressure causes most of the harm. Watching is how it is caught in time.
"Once hearing starts to go, nothing can be done."
There are several options, from a drug that can slow growth to hearing aids and implants. None suits everyone and results vary. The earlier a change is found, the more choices remain open.
"Only the person with symptoms needs checking."
A child who carries the family's fault can have tumours long before hearing changes, which is why carriers are checked while they feel well. A relative who tests negative for the family's fault usually does not need these checks at all.
Being straight with you
What can this page not tell you?
It cannot tell you how fast a particular tumour will grow or when your hearing will change. NF2 varies a great deal, even between a parent and a child with the same fault. Your specialist judges that from your own scans and hearing tests over time. What your specific variant means is a question for the counsellor who ordered the test.
Where the evidence is thin
NF2 is rare, so studies are small. Advice on when to start a drug, how long to continue it and when to operate is still being refined. People whose fault is present in only some of their cells, called mosaic NF2, often have a milder course, and their plan may differ.
Who this does not apply to
Most people with hearing loss do not have NF2. A single tumour on one hearing nerve, found in later adult life with no family history, is usually not inherited. People with schwannomatosis from an LZTR1 or SMARCB1 fault rarely need this level of hearing surveillance. The differences are set out in schwannomatosis compared with NF2.
If you live in a district, ask whether the hearing tests can be done nearer home and the reports carried to your specialist in Hyderabad.Questions we are asked
Common questions about NF2 and hearing
How often are hearing tests needed in NF2?
Most people with NF2 have a hearing test at least once a year, usually alongside an MRI. The checks come more often while a tumour is growing or hearing is changing, and may be spaced out after a long stable spell. Your specialist sets the pattern for you.
When should a child with NF2 start hearing tests?
Usually in early childhood, once the child is known to carry the family's fault or is still awaiting a test. Very young children can have the brainstem response test, which needs no answers from them. Booth tests are added once the child can follow instructions.
Does ringing in the ears mean the tumour is growing?
Not necessarily. Ringing or buzzing, called tinnitus, is common in NF2 and can come and go. A new or changed ringing is worth mentioning at your next visit. Sudden hearing loss, new dizziness or a drooping face needs a doctor much sooner.
Can a hearing aid help someone with NF2?
Yes, while the nerve still carries useful sound. Aids work best when speech is still heard fairly clearly. Your audiologist will tell you when an aid is worth trying and when an implant might help more.
What is bevacizumab, and does it bring hearing back?
It is a drug given through a drip that can slow the growth of some vestibular schwannomas. Some people find their hearing steadies or improves for a time. It does not work for everyone and has side effects of its own, so the decision is made with a specialist team.
Can the hearing tests be done closer to home?
Often, yes. Beep and speech tests are available at many ENT clinics in district towns. Ask your specialist whether each test should be done in the same place every time, because comparing like with like makes the trend much easier to read.
Should our family learn lip reading or sign language?
Many families find it helps to start early, while hearing is still good. Learning a new way to communicate is far easier before you depend on it. A hearing therapist can point you to classes and resources that suit your family and your language.
Who should I see for NF2 hearing surveillance?
An ENT surgeon or neuro-otologist working with an audiologist, ideally linked to a team that sees NF2 regularly. Call the CION helpline if you are unsure where to start, and someone will point you to the right clinic.
Your Specialists
Meet CION's oncologists. Bring your family history or genetic report to them.
Our medical oncologists see people with a strong family history of cancer, arrange genetic counselling and testing where it fits, and plan the checks that follow.
Medical Oncologist
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Medical Oncologist
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
Medical Oncologist
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
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Sources
- GeneReviews (NCBI Bookshelf) — NF2-Related Schwannomatosis
- NHS — Neurofibromatosis type 2
- National Institute on Deafness and Other Communication Disorders — Vestibular Schwannoma (Acoustic Neuroma) and Neurofibromatosis
- National Institute on Deafness and Other Communication Disorders — Sudden Deafness
This page is general information, not a prescription. Do not change or stop any treatment based on what you read here. If anything is worrying you, contact your own treating team — or call our helpline and we will help you reach the right specialist.
Keep reading
Related pages
Surveillance for NF2 and the schwannomatosis genesThe full schedule of scans and checks, not only hearingSchwannomatosis vs NF2Why the two conditions are watched so differentlyNF2 positive: what happens nextThe first steps after a positive resultTesting the family for NF2Which relatives need checks, and which can stop
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Worried about a change in hearing with NF2?
Tell us what the last hearing test and scan showed. We will help you find the right specialist and work out what should be checked next. One helpline serves every CION centre.