Cholesteatoma

A cholesteatoma is a cyst or pouch of skin which can grow behind the eardrum. It’s usually caused by repeated ear infections. In rare cases, children can be born with cholesteatomas. This is called congenital cholesteatoma.

Cholesteatoma usually affects one ear but can affect both (known as bilateral cholesteatoma).

Symptoms of cholesteatoma include:

• a persistent discharge (leak) from the affected ear
• gradual loss of hearing in the affected ear
• a feeling of ear pain or pressure 

If left untreated, a cholesteatoma can get bigger and destroy the delicate bones within the middle ear. This can cause permanent deafness.

Cholesteatoma can also cause:

• ear infections
• vertigo
• tinnitus
• damage to the facial nerve

In very rare cases, untreated cholesteatoma can cause a brain abscess or meningitis.

There needs to be much better awareness of cholesteatoma. We recently saw a GP who’d never heard of it, so I had to explain! I think if people knew more about cholesteatoma symptoms, they might feel more confident asking their child’s GP whether they’ve considered it.

Maria is mum to Alex (4) who has bilateral congenital cholesteatoma.

Diagnosing and treating cholesteatoma

A cholesteatoma should be removed as soon as possible, before it can cause damage. If your child has a chronic discharge from the ear over a long period, or lots of ear infections, they should see an Ear, Nose and Throat (ENT) specialist for assessment and advice. An ENT doctor can usually diagnose cholesteatoma by examining the ear. They may refer your child for a CT scan to confirm the diagnosis.

A child with cholesteatoma will usually be offered surgery to remove the cholesteatoma. If your child has cholesteatoma surgery, the surgeon will tell you what to expect and how to look after the ear after surgery. It’s very important to follow all the instructions to avoid infection. 

Some children find that their hearing improves after cholesteatoma surgery. Others will continue to have hearing loss. Some children who’ve had cholesteatoma surgery will continue to use hearing aids or implants to support their listening.

After a cholesteatoma has been removed, children should have regular hearing tests to make sure the cholesteatoma doesn’t grow back.