What Is a Cholesteatoma?

A cholesteatoma (kuh-less-tee-uh-TOE-muh) is a growth behind the eardrum, in the middle part of the ear where tiny bones relay sound waves from the eardrum to the inner ear.

As a cholesteatoma grows, it can damage the bones of the middle ear. This can lead to hearing loss if it's not treated.

What Are the Signs & Symptoms of a Cholesteatoma?

A child with a cholesteatoma usually has infected fluid draining from the ear. Other signs include:

• a feeling of pressure or pain in or behind the ear
• trouble hearing
• ringing in the ear (tinnitus)

An untreated cholesteatoma can continue to spread and damage surrounding bones. Rarely, it can cause dizziness, problems moving the face muscles, and serious brain infections.

What Causes a Cholesteatoma?

Most cholesteatomas happen in kids who've had several ear infections. Having a lot of ear infections can make the eardrum pull back into the middle ear space and form a pouch. Skin cells can get trapped in the pouch. The pouch can grow bigger and get infected.

Sometimes, a child is born with a cholesteatoma. A congenital (present at birth) cholesteatoma can grow for years without causing symptoms but may eventually lead to hearing loss.

People with cleft palates, craniofacial defects, and genetic problems (like Down syndrome) are more likely to get a cholesteatoma.

How Is a Cholesteatoma Diagnosed?

Diagnosing cholesteatomas early can prevent many of the complications they can cause.

Doctors suspect a cholesteatoma when they see:

• a white mass behind the eardrum
• other changes in the eardrum
• ear drainage that continues for more than 2 weeks even with treatment

The doctor will refer a child with a cholesteatoma to an ear, nose, and throat (ENT) surgeon, also known as an otolaryngologist. The ENT surgeon works with hearing specialists (audiologists) to see how well the ear is working. They will do hearing tests (audiometry).

The ENT surgeon usually will order a CT scan, which can show the small bony details of the ear clearly. The test results help the surgeon:

• confirm the diagnosis, if it's in doubt
• plan treatment

How Is a Cholesteatoma Treated?

A cholesteatoma is removed with surgery while the child is under general anesthesia. Removing it completely can be hard. The ENT surgeon may have to remove the middle ear bones. Sometimes, more than one surgery is needed.

A child whose middle ear bones (called ossicles) are damaged might need more surgery to improve hearing. The surgeon might replace missing or damaged ossicles with cartilage or artificial parts.

Cholesteatoma can dissolve the bone over the facial nerve, which passes by the middle ear bones. So, a special nerve monitor is used during surgery. Permanent damage to the facial nerve from surgery is very rare.

What Else Should I Know?

Small congenital cholesteatomas can be completely removed and usually don't grow back. Larger cholesteatomas and those that happen after ear infections are more likely to grow back months or years after surgery.

Kids will need frequent ear exams and hearing tests for years after surgery to make sure the cholesteatoma doesn't happen again.