CION Cancer Clinics
Head and neck paragangliomas: your ears, your voice and your options | CION Cancer Clinics
Head and neck paragangliomas are slow-growing tumours near the ear, the skull base and the large neck vessels. In the ear they can cause a whooshing sound in time with the pulse, or muffled hearing. Most are not cancer, and many can be safely watched. This page explains where they grow, how hearing and nerves are checked, and how watching compares with treatment. At CION Cancer Clinics, our oncologists plan screening and care for families with an inherited cancer syndrome, explained in plain words.
On this page
- What is a head and neck paraganglioma, and why can it affect hearing?
- Where do they grow, and what do they feel like?
- How are these tumours and your hearing assessed?
- The words you will hear, in plain language
- Watching or treating: how do they compare?
- What this page cannot tell you
- Four things patients tell us, and what is actually true
- Common questions about head and neck paragangliomas
The short answer
What is a head and neck paraganglioma, and why can it affect hearing?
It is a slow-growing tumour of nerve-related tissue that sits near the large blood vessels and nerves of the neck and the base of the skull. When it grows in or near the ear, it can press on the parts that carry sound. Because it is packed with blood vessels, it can also cause a whooshing noise that beats in time with your pulse.
Why gene carriers are watched for them
These tumours are linked most often to a fault in the SDHD gene, and sometimes to SDHAF2 or SDHC. In carriers they can appear on both sides of the neck, or several at once. Many are now found on a screening MRI, long before any symptom appears.
Why treatment is a balance
Most of these tumours are not cancer and grow slowly over years. They sit very close to nerves that control your voice, swallowing, hearing and facial movement. Sometimes treating the tumour carries more risk to those nerves than the tumour does, so careful watching is often a sound choice.
Unlike tumours in the abdomen, most head and neck paragangliomas release little or no hormone.The four common sites
Where do they grow, and what do they feel like?
The name on your report tells you where the tumour sits. That largely decides the symptoms.
Carotid body tumour
Sits where the main neck artery divides, just below the angle of the jaw. It is the commonest type.
Often felt as
- A painless, firm lump in the upper neck
- A lump that moves sideways but not up and down
Middle ear tumour
Called glomus tympanicum. It grows behind the eardrum and is the type most tied to hearing. An ENT doctor may see a small red patch behind the drum.
Often felt as
- A whooshing sound in one ear, in time with the pulse
- Muffled hearing on that side
Skull base tumour
Called glomus jugulare. It grows where a large vein leaves the skull, beside several nerves. Along with hearing changes, it can cause hoarseness, trouble swallowing, or weakness of the shoulder or tongue.
Vagal tumour
Grows along the vagus nerve high in the neck. It may show as a neck lump, a hoarse or weak voice, or a feeling of food catching when you swallow.
Not sure whether this applies to you?
Ask an oncologistChecking ears and nerves
How are these tumours and your hearing assessed?
An ear and throat examination
An ENT surgeon looks at the eardrum under magnification, checks your voice box with a thin camera, and tests the nerves of the face, tongue and shoulder.
A hearing test
You sit in a quiet booth, listen to tones through headphones and press a button when you hear them. The result, called an audiogram, shows which ear has lost what kind of hearing.
An MRI scan, sometimes with CT
MRI shows the tumour and nearby vessels. A CT scan of the ear bones may be added to see whether the tumour is wearing away bone.
A hormone blood test
Metanephrines are checked before any treatment. A hidden hormone tumour elsewhere must be found first, because it can make anaesthesia unsafe.
A team decision
Surgeons, radiation oncologists and radiologists review everything together and set out the options, including simply watching.
On your report
The words you will hear, in plain language
- Pulsatile tinnitus
- A rhythmic whooshing or thumping sound in the ear that keeps time with your heartbeat.
- Conductive hearing loss
- Sound is blocked before it reaches the inner ear, often by something in the middle ear. It can improve if the blockage is removed.
- Sensorineural hearing loss
- Damage to the inner ear or the hearing nerve. It usually does not recover, but hearing aids can help.
- Cranial nerves
- The nerves that leave the brain directly and control hearing, voice, swallowing, facial movement and the tongue.
- Audiogram
- The chart produced by a hearing test, showing how well each ear hears low and high sounds.
- Wait and scan
- Watching a tumour with regular MRI and hearing tests instead of treating it straight away.
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Side by side
Watching or treating: how do they compare?
Being straight with you
What this page cannot tell you
It cannot tell you which option is right for your tumour. That depends on its size, its exact position, how fast it is changing, your hearing in both ears and your age. Those questions need an ENT or skull base surgeon, a radiation oncologist and a radiologist looking at your scans together.
It cannot interpret your gene result
What your specific variant means is a question for the counsellor who ordered the test. The gene also affects whether relatives need screening and whether the parent it came from matters.
Who this does not apply to
Most people with ringing in the ears, hearing loss or a neck lump do not have a paraganglioma. Ordinary ringing that is steady rather than in time with the pulse, age-related hearing loss and swollen neck glands are far more common. This page is for people with a known tumour or a confirmed gene fault. Studies comparing watching with treating are mostly small and come from specialist centres abroad.
Ask for a hearing test before any treatment, so there is a clear baseline to compare against later.Commonly believed
Four things patients tell us, and what is actually true
A sound that beats in time with your pulse in one ear is different from ordinary ringing. In a gene carrier it should always be checked by an ENT doctor and usually with a scan.
Many of these tumours grow very slowly. For small, quiet ones, careful watching avoids the nerve risks of treatment without adding danger. Treatment is offered when a tumour grows or causes trouble.
Sometimes. Hearing blocked by a small middle ear tumour can improve after removal. Hearing lost through damage to the inner ear or nerve usually does not return, though hearing aids can help.
The blood test also looks for a hidden tumour somewhere else, which gene carriers can have. It must be clear before any surgery or anaesthetic.
Questions we are asked
Common questions about head and neck paragangliomas
Is a head and neck paraganglioma cancer?
Most are not. They grow slowly and rarely spread, though a small number can. The main concern is usually pressure on nearby nerves and vessels. Your team watches for growth and for any sign of spread through regular scans.
Will I lose my hearing completely?
Most people keep useful hearing, especially when tumours are found early on screening. Hearing loss, if it happens, is usually on one side. Regular hearing tests track any change, so treatment can be offered before a large loss.
Can a hearing aid help?
Often, yes. Hearing aids work well for many people with hearing loss from these tumours or their treatment. An audiologist can advise which type suits your kind of loss. Some people with loss in one ear manage well without one.
Does radiotherapy affect hearing?
Targeted radiotherapy aims to stop the tumour growing while sparing nearby structures. Hearing can still change over time in some people. Your radiation oncologist will explain the risk for your tumour's position before you decide.
Why do I need an MRI if my hearing test is normal?
A tumour can grow for years without touching your hearing, particularly in the neck. The MRI finds tumours before they cause symptoms, which is the whole point of screening gene carriers.
Should both sides of the neck be checked?
Yes. In SDHD carriers especially, tumours on both sides or at several sites are fairly common. Screening MRI covers the whole neck and skull base, and each tumour is assessed on its own.
Can the ENT doctor in my district do the checks?
A local ENT doctor can examine your ears and arrange a basic hearing test. Treatment decisions are best made at a centre with a skull base team. Carry your scans and hearing reports to every visit.
Should my family members be tested?
If your tumour is linked to a gene fault, blood relatives can be tested for that exact fault. For SDHD, which parent passed it on matters a great deal. Your counsellor will explain who needs testing and who needs screening.
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.
Dr. C. Raghavendra Reddy
MBBS(Gold Medal), DNB(General Medicine), DM(Medical Oncology)(Gold Medal)
Dr. Bharati Devi Gorantla
MBBS, MD(General Medicine), DM(Medical Oncology)(Adyar,Chennai), ECMO, MRCP SCE(UK)
Dr. Owais Mohammed
MBBS, MD (General Medicine), DrNB (Medical Oncology), ECMO, MRCP SCE (Medical Oncology) (UK)
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Sources
- GeneReviews (NCBI) — Hereditary Paraganglioma-Pheochromocytoma Syndromes
- MedlinePlus Genetics — Hereditary paraganglioma-pheochromocytoma
- National Cancer Institute — Pheochromocytoma and Paraganglioma Treatment (PDQ) - Patient Version
- MedlinePlus Genetics — SDHD gene
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.
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