Cholesteatoma (pronounced co-les-tee-ah-tow-mah) is a benign growth that must be removed because it damages the ear and may cause serious complications. Cholesteatoma is skin that grows inside the ear including the middle ear (behind the ear drum), and mastoid (a space behind and connected to the middle ear). Normally skin is not present inside the ear, only lining the ear canal and outer surface of the ear drum. There are several types:

  • Congenital cholesteatoma happens because sometimes skin cells are present inside the ear that slowly grows. Congenital cholesteatoma is uncommon. It is usually diagnosed during childhood and for this reason is often seen by Lurie Children’s specialists who only treat children.
  • Acquired cholesteatoma is the most common type. It occurs when skin from the eardrum or ear canal grows into the space behind the eardrum. It is more common in children with chronic eustachian tube dysfunction and retracted eardrums. Often these children have a history of ear infections.
  • Canal wall cholesteatoma is rare. It begins and usually only involves the ear canal. It is more common in children with very narrow ear canals but may occur within an ear canal of normal size.

Although cholesteatoma is uncommon, we have otolaryngology physicians at Lurie Children’s specializing in its diagnosis and treatment in children of all ages. Cholesteatoma requires surgical removal. We use all available surgical techniques, including microscopes and high-definition endoscopes, to provide high-quality and individualized surgical care. Our specialists treating this condition are Stephen R. Hoff, MD; Nancy Young, MD; and Kathleen Billings, MD. Our specialists take care of patients from across the United States. If an otolaryngologist (ENT physician) has already diagnosed cholesteatoma and an imaging study is available, your child may be eligible for an initial appointment by telemedicine.

How is Cholesteatoma Diagnosed?

Cholesteatoma may be challenging to diagnose and may be recognized for many different reasons. It does not typically cause pain, especially during early stages of disease. It also may be difficult for a physician to see because of the presence of fluid in the middle ear or ear canal. A child with cholesteatoma may have a history of chronic or recurring ear infections with or without infected liquid draining into the ear canal. Initially treatment with antibiotics or ear drops may appear to help children with cholesteatoma who are thought to have only infection.

Sometimes cholesteatoma is found during minor surgery to place a pressure equalizer (PE) tube because it becomes visible when the ear is being cleaned and fluid removed. Other children may have no symptoms at all, and cholesteatoma is found because a medical professional sees a white mass beneath the ear drum. Hearing loss is sometimes the reason cholesteatoma is found. For example, a child fails a hearing screening at school which results in further evaluations leading to concern about cholesteatoma. Rarely, the first sign of cholesteatoma is weakness or paralysis of muscles that move one side of the face or infection that has spread to the brain.

The diagnosis of cholesteatoma is made by an otolaryngologist. Often an imaging study, usually a CT temporal bone scan, is requested to help confirm the diagnosis or to determine the extent of growth. For most children, the CT study can be done while the child is awake. A hearing evaluation by an audiologist is also often requested.

What is Treatment like for Cholesteatoma?

Surgery is necessary to remove cholesteatoma. If cholesteatoma is not removed, it may eventually cause serious complications including meningitis and facial nerve paralysis.

Ear surgery always involves specializes techniques using either endoscopes and/or a microscope because magnification is necessary to see small structures well. How surgery is done depends upon the size of cholesteatoma and what ear spaces and structures are involved. Cholesteatoma often involves the bone of hearing (ossicles) in the middle ear, even before there is hearing loss. In these cases, a second surgery that includes rebuilding the hearing bones may be necessary. The incisions (behind the ear or only inside the ear canal) will also depend upon the size and location of cholesteatoma.

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