Cholesteatoma

Overview

A cholesteatoma (say: ko-less-tee-uh-TOH-muh) is a small sac of skin cells that grows in the wrong place — usually behind the eardrum, inside the middle ear or the bone behind the ear. Normally, skin only grows on the outside of your body and on the outer ear canal. With a cholesteatoma, skin gets trapped and keeps shedding old cells. These build up into a growing lump. It is not cancer, and it does not spread to other parts of the body. But as it grows, it can press on and slowly damage the tiny bones of hearing and nearby structures, so it needs medical attention.

It is uncommon. About 3 to 12 people in every 100,000 are found to have one each year. It is seen more often in children and young adults than in older people.

It can affect anyone, but it is most often found in children and young adults. It is more likely in people who have had repeated ear infections, who have a eardrum that has been pulled inward (a retraction pocket), or who were born with a cleft palate or Down syndrome.

Symptoms

Common symptoms

• A discharge from one ear that smells unpleasant and keeps coming back — this is the most common sign
• Gradual hearing loss in the affected ear
• A feeling of fullness or pressure in the ear
• Earache or discomfort, though many people feel no pain at all
• Ringing or buzzing in the ear (tinnitus)
• Occasional dizziness or a sense of imbalance

Symptoms in children

• Ongoing smelly ear discharge that does not clear up with usual treatment
• Repeated ear infections in the same ear
• Trouble hearing, or asking for the TV or music to be turned up
• Speech that seems delayed or unclear for their age
• Doing less well at school, or seeming tired and distracted because listening is hard
• Sometimes a child has no complaints at all, and the problem is only seen during an ear check

Symptoms in older adults

• Long-standing discharge from one ear that keeps returning
• Hearing loss that may be put down to ageing, so the ear problem is missed
• A blocked or full feeling in one ear
• Occasional dizziness, which can be mistaken for other balance problems
• Because symptoms are quiet and slow, it can take longer to be noticed — a persistent one-sided discharge is always worth checking

Causes

Main causes

• A poorly working eustachian tube — the small tube that connects the middle ear to the back of the nose and keeps air pressure balanced. When it does not work well, the eardrum can be sucked inward and form a pocket where skin collects.
• Long-term or repeated middle ear infections that damage the eardrum and the lining of the middle ear.
• An injury or tear in the eardrum that lets skin grow inward.
• Rarely, a baby is born with a cholesteatoma (called congenital), which can be found even without any ear discharge.

Risk factors

• Frequent ear infections, especially in childhood
• A history of a 'glue ear' or long-standing fluid behind the eardrum
• A collapsed or retracted eardrum pocket
• A cleft palate, or Down syndrome, which make ear problems more likely
• Long-term nasal allergies or sinus problems
• Exposure to second-hand smoke, which increases ear problems in children
• Having a parent or sibling with a cholesteatoma (a small family link has been noted)

When to see a doctor

See a doctor urgently if:

• Any weakness or drooping of the face
• Swelling, redness or tenderness behind the ear
• Severe headache, stiff neck, confusion or a high fever with ear symptoms — call your local emergency number
• Sudden hearing loss or sudden severe dizziness
• Ear discharge with severe pain that is getting worse

Book a routine appointment if:

• A smelly or watery discharge from one ear that keeps coming back over weeks or months
• Gradual hearing loss in one ear
• A blocked or full feeling in one ear that does not settle
• Repeated ear infections in the same ear
• A child who is not hearing well, or whose speech seems delayed

Diagnosis

A doctor will ask about your symptoms and look inside your ear with a small light and a magnifying instrument. They may use a special ear microscope to see behind the eardrum more clearly. If they suspect a cholesteatoma, they will usually refer you to an ear, nose and throat (ENT) specialist, who can confirm the diagnosis and plan treatment.

Tests that may be done

• Otoscopy — looking into the ear with a light and magnifier
• Microscopic ear examination by a specialist, which may include gently cleaning the ear to see better
• Hearing test (audiometry) to measure how well each ear hears
• Tympanometry — a quick test of how the eardrum moves
• A CT scan of the ear and nearby bone, which shows the size and position of the growth
• An MRI scan in some cases, especially if complications are suspected or before surgery

What to expect at your appointment

The checks are quick and do not hurt, though cleaning the ear can feel a little odd. A hearing test involves wearing headphones and pressing a button when you hear a sound. A scan is painless and takes only a few minutes. You will usually be told the results and the next steps at a follow-up visit. If surgery is advised, you will have time to ask questions and talk it through.

Treatment

The main treatment for a cholesteatoma is surgery to remove it completely. There is no medicine that makes it go away. Your care team will plan treatment based on the size of the growth, your hearing, your age and your general health. The aim is to remove the growth safely, protect hearing and balance, and lower the chance of it coming back.

Self-care at home

• Keep the affected ear completely dry — use earplugs or a cotton wool ball with petroleum jelly when showering or washing your hair, and avoid swimming until your specialist says it is safe
• Do not poke anything into your ear, including cotton buds
• Clean the outer ear gently with a soft cloth only
• Follow any instructions from your ear specialist about ear drops or cleaning — ask your pharmacist or clinic if you are unsure
• Keep up with follow-up appointments, even when you feel fine, because small regrowths are easiest to treat early
• Tell any doctor or nurse treating you that you have a cholesteatoma, especially before ear syringing or water-based activities

Medical treatments

Your care team may first treat any infection or inflammation with a course of antibiotic tablets or ear drops, and may gently clean your ear in the clinic. These measures help settle discharge and prepare the ear, but they do not remove the cholesteatoma itself. Some people need regular clinic cleaning while waiting for surgery, or after it. Your specialist will explain which options suit you and will never rely on medicines alone to cure the condition.

When is surgery considered?

Surgery is usually recommended once a cholesteatoma is confirmed, because it will not go away by itself and can slowly cause damage. The operation is done under general anaesthetic. The surgeon removes the growth and any damaged tissue, and where possible repairs the eardrum and the tiny hearing bones. There are different types of operation, and your surgeon will explain which is best for you, what it involves, how long recovery takes, and how it may affect your hearing. Sometimes a second, smaller operation is planned later to check that the ear is clear.

Living with this condition

Most people get back to normal life within a few weeks of surgery. Until your ear has fully healed, you will need to keep water out of it, avoid heavy lifting and follow your surgeon's advice about flying, swimming and exercise. Hearing may be different afterwards — sometimes better, sometimes unchanged, and occasionally worse in the short term while swelling settles. Regular follow-up visits are a normal part of life after treatment, and many people need them for several years.

Lifestyle tips

• Use earplugs when showering, bathing or swimming if your specialist advises it
• Avoid smoking and keep children away from second-hand smoke
• Treat colds, allergies and nasal congestion early to help the ear tubes work better
• Wear hearing protection in loud places to protect the hearing you have
• Let teachers, coaches and employers know if you or your child needs extra help hearing
• Keep a simple note of any discharge, pain or change in hearing to share at appointments

Diet and exercise

There is no special diet for a cholesteatoma; eating a balanced, varied diet supports healing after surgery. Gentle activity and walking are fine, but follow your surgeon's advice about when to return to strenuous exercise, contact sports or swimming. Ask before you fly or dive, as pressure changes can matter while the ear is healing.

Mental health and emotional wellbeing

Hearing problems and repeated clinic visits can be tiring and can affect confidence, school or work. It is completely normal to feel worried or frustrated. Talking to family, friends, your GP or a counsellor can help. If low mood or anxiety is affecting your daily life, please reach out for support — and remember that free mental health crisis lines and local crisis services are available if you ever feel you cannot cope.

Prevention

Not every cholesteatoma can be prevented, especially the type present from birth. But you can lower the risk by getting repeated ear infections and long-standing fluid behind the eardrum checked and treated, and by managing allergies and nasal problems. If a child has a retracted eardrum or ongoing discharge, early review by an ear specialist is the best way to catch problems before they grow.

Vaccines

There is no vaccine against cholesteatoma. Keeping up to date with routine childhood vaccinations, including those that help prevent certain ear and chest infections, supports general ear health — ask your GP or pharmacist about what is recommended for you or your child.

Screening programmes

There is no national screening programme for cholesteatoma. It is usually found when someone seeks help for ear discharge or hearing loss, or during a routine ear check. If you have a history of repeated ear problems, mention it at your check-ups.

Complications

If left untreated

• Ongoing smelly ear discharge and discomfort
• Gradual and sometimes permanent hearing loss as the tiny hearing bones are damaged
• Damage to the balance system, causing dizziness
• Weakness of the face on the affected side if a nerve is pressed on
• Infection spreading to the bone behind the ear (mastoiditis)
• Rarely, more serious infection spreading inward, such as meningitis — this is why early treatment matters

Long-term outlook

The outlook is generally good. Surgery removes the cholesteatoma in most people, and many keep useful hearing or have hearing rebuilt during the operation. Some people need a second operation or long-term follow-up, and a small number have the growth come back. Keeping your appointments and reporting new symptoms early makes a real difference. Most people with a cholesteatoma go on to live full, active lives.

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