What is a cholesteatoma?
A cholesteatoma is a cyst-like collection of dead skin cells that can damage some of the middle ear bone and soft tissue. It generally starts in the middle ear, behind the eardrum. It may become larger as it fills with old skin cells. Occasionally, babies are born with it (congenital).
If it causes an ear infection, you may have discomfort and fluid drainage from the ear canal. It is not cancerous. While it is not usually an emergency, it should be surgically removed so that it doesn’t continue to grow and damage other areas of your ear.
What are the symptoms of a cholesteatoma?
Very occasionally cholesteatomas can be found on incidental imaging or without other symptoms. For patients with these types of cholesteatoma, it is sometimes challenging for them to understand the seriousness of the situation. Even though they may not have any symptoms, the severity of the illness is the same. —Dr. David Lee
A cholesteatoma can grow in the ear slowly. You can have it for years before noticing symptoms. Fluid draining from the ear or recurrent ear infections are usually the earliest symptom. As it grows, the cholesteatoma can put pressure on surrounding bones and tissues in the ear, including the eardrum. This can create pressure or pain, discharge from the ear, and hearing loss.
- Fluid draining from the affected ear. You may see white, crusty discharge on your pillowcase in the morning. This may come from a hole (perforation) in the eardrum caused by the cholesteatoma. The fluid drainage is typically painless.
- A feeling of fullness or pressure in your ear.
- Hearing loss. As a cholesteatoma grows larger, it can cause hearing loss by damaging the eardrum or the inner bones of the middle ear.
Other symptoms you may have
- Earache. A cholesteatoma can cause an ear infection (otitis media), which will be painful and create drainage.
- Discharge. If you have an ear infection, discharge from your ear may smell bad and could be laced with blood. This is an uncommon symptom and more likely in people who have a hole in their eardrum.
- Dizziness. Balance is regulated by structures in our ears called the vestibular apparatus. If a cholesteatoma grows large enough to come in contact with these structures, you may get dizzy. This is uncommon.
- Facial paralysis. The facial nerve runs very close to the ear canal. If a cholesteatoma grows large enough to come in contact with this nerve, you may become unable to move one side of your face. This is a relatively uncommon symptom.
- Rare complications can happen when cholesteatomas are untreated and grow bigger over many years. Untreated, cholesteatomas can destroy bone and go into the area around the brain. These complications can include compression of a major vein leading to clot formation (sigmoid sinus thrombosis), infection along the outer covering of the brain (epidural abscess), and meningitis (brain inflammation caused by viral or bacterial infection).
The most common reason a cholesteatoma forms is from problems with your eustachian tubes. These are the passageways that connect your ears to your nose and throat and equalize pressure. When the eustachian tube doesn’t function properly, it causes negative pressure and pulls the eardrum backwards towards the inner ear. This leads to a mass of skin cells that can form the cholesteatoma.
You are more likely to have eustachian tube problems if you have seasonal allergies, sinusitis (sinus inflammation), or recurring colds. These increase your risk of a retracted eardrum and a cholesteatoma.
People who have a hole in their eardrum (called a perforated tympanic membrane) may also get a cholesteatoma. A hole disrupts the pressure system in the ear, pulling skin cells into the middle ear.
People may get holes in their eardrum from frequent ear infections in childhood, or from a high-impact jump into water. You may not know if your eardrum has had a hole in it. Sometimes, they heal on their own.
If you are having painless ear drainage or difficulty hearing, you may have a cholesteatoma. Make an appointment with your doctor or an ENT.
Some cholesteatoma symptoms are similar to those of other illnesses. Severe dizziness, sudden hearing loss, or painful, blood-tinged drainage are usually signs of a cholesteatoma. You should head to an urgent care or ER right away.
It is very true that it is like a tumor, but it is purely benign—meaning there are no malignant or cancerous cells. However, cholesteatoma can be very locally destructive and can cause some severe complications. Follow through with all recommended treatments or surgeries. —Dr. Lee
Your doctor or an ear, nose, and throat (ENT) doctor will use a tool called an otoscope to look into your ear, which may allow them to see the cholesteatoma. A diagnosis can be confirmed with a CT scan. You may also see an audiologist for a hearing test.
Your doctor will likely recommend ear surgery to remove the cholesteatoma. The surgery is done in an outpatient surgery center—most people go home the same day.
Surgery will remove as much of the cholesteatoma as possible so that it doesn’t grow back. To be sure of that, part of the eardrum or the bones of the ear may need to be removed and then reconstructed using tissue from behind the ear.
If this is necessary, you may need a two-stage surgery. The first surgery is to remove the cholesteatoma. The “second look” surgery is to make sure the cholesteatoma has not returned and for bone reconstruction.
The decision about how much ear tissue to remove is difficult. The more tissue that is removed, the less likely a cholesteatoma will recur, but also the greater likelihood that the surgery will cause some damage to hearing.
You will probably need 1 to 2 weeks after surgery to recover. Follow up with your doctor every 6 months for the first 1 to 2 years after surgery. Your doctor may eventually see you once a year if there are no signs of it returning.
Cholesteatomas in children
Cholesteatomas that are present at birth are from minor or major birth defects in the anatomy of the ear. Unlike adults, children with cholesteatomas often do not have holes in their eardrums or drainage from the ear.
Most congenital cholesteatomas don’t cause symptoms during childhood, so it is important for your pediatrician to look at your child’s ears during well visits. In addition to exams, your pediatrician can perform hearing checks. If it has grown large, they may have hearing loss. If your child has these symptoms, see your pediatrician.
The best way to prevent a cholesteatoma is to address possible underlying causes. This includes getting immediate treatment for ear infections, sinus infections, recurring colds, or trauma to the ear. Also, always tell your doctor about any unusual symptoms like having trouble with your hearing.