Cholesteatoma: symptoms, causes and treatment

The NHS lists three common symptoms, usually in one ear: a watery, smelly discharge that comes out of the ear, a gradual loss of hearing, and pain in the affected ear.

Cholesteatoma can also cause ear infections that keep coming back, vertigo, tinnitus and damage to the facial nerve. Great Ormond Street Hospital says that, left untreated, it can keep building up and damage structures such as the ossicles, the mastoid bone and the cochlea, causing dizziness, balance problems and possibly permanent hearing loss.

Great Ormond Street Hospital describes a cholesteatoma as an abnormal skin cell growth in the middle ear behind the eardrum. The NHS describes it as a build-up of dead skin cells inside the ear. It is not a cancer, but it can erode nearby structures and become infected, which is why it needs specialist care.

It is different from a simple ear infection. The NHS says if a GP thinks your symptoms are caused by an ordinary bacterial ear infection they can treat you; if they suspect a cholesteatoma they may give ear drops and refer you to an ear, nose and throat (ENT) specialist.

The NHS says a cholesteatoma can develop if your eardrum is damaged through injury, infection or after any kind of ear surgery. You can also be born with one, which is rare.

Great Ormond Street Hospital says it may be present at birth, with skin cells developing in the wrong place in the womb, or may follow repeated ear infections. It adds that a cholesteatoma cannot be prevented, although treating ear infections promptly can help.

The NHS says a GP will examine the inside of your ear. Great Ormond Street Hospital says doctors can diagnose it using an otoscope, a tool with a light and a magnifying glass, and may see a hole in the eardrum.

You may be referred to an ENT specialist for more tests, including a CT scan, according to the NHS.

The NHS says you will usually have surgery in hospital to remove a cholesteatoma. The operation removes the build-up of dead skin cells and is done under general anaesthetic. You may go home the same day or stay overnight, or longer if there are any problems.

If a cholesteatoma affects your hearing, surgery may help to improve it. The NHS says surgery does not always help and hearing may stay the same or possibly get worse. If surgery did not completely remove it, you may need another procedure.

Great Ormond Street Hospital notes that the first treatment for a child often involves a course of antibiotics and ear drops, with an operation also an option. It also says a cholesteatoma can come back even after it has been removed, which is one reason for long-term follow-up.

The NHS says you may have stitches and packing in your ear to stop bleeding, which are removed after a few weeks. It may take some time to recover fully and it can be painful; you may be advised not to work for 1 to 2 weeks or longer. Most people take 6 to 8 weeks to recover fully, with long-term follow-up care.

• Keep the affected ear dry when showering.

• Plug your ear with a small piece of Vaseline-coated cotton wool when you wash your hair.

• Check with the surgeon first if you need to travel by plane.

• Try to keep your mouth open if you sneeze.

• Avoid swimming for at least 6 weeks if you can.

• Do not blow your nose until the surgeon says it is OK; you can sniff.

Children can be born with a cholesteatoma or develop one after repeated ear infections. Great Ormond Street Hospital says that if a child has repeated ear infections a doctor might suggest tests to discover the cause, and that surgery in a child is a short operation under general anaesthetic.

The NHS advice to see a GP for persistent ear discharge, hearing problems or ear pain applies to children too.

See a GP if you have problems with your hearing, discharge from your ear that does not go away after prescribed antibiotics, or ear pain for more than 3 days that does not go away.

Call 999 if someone has a drooping face on one side, cannot lift both arms and keep them there, or has difficulty speaking; the NHS says these can be signs of a stroke. After surgery, ask for an urgent GP appointment or call NHS 111 for a lot of discharge or bleeding from the ear or wound, a high temperature or severe or increasing pain, which may be signs of infection.

On the NHS the pathway usually runs from your GP to an ENT department, where examination under a microscope and a CT scan may be arranged. Private ENT surgeons offer the same assessment and surgery, with different waiting times and charges; ask what the quoted price covers, including scans and follow-up appointments.