Cholesteatoma
Cholesteatoma is a condition that often worries patients when they first hear the name, but it isn't a cancer. It's a benign growth of skin in a place skin shouldn't be: skin that has become trapped behind the eardrum, in the middle ear or the mastoid bone behind it, and that slowly builds up over time. The "-oma" ending simply means a growth or collection.
Cholesteatoma is almost always slow to develop. Most patients have had subtle symptoms for months or years before the diagnosis is made. Often it is a faintly discharging ear, a gradual drop in hearing, or recurrent infections that just don't quite settle. It's typically a painless condition, which is part of the reason it can sit there unrecognised for so long. Pain is unusual unless there's an active infection on top.
I see and treat patients with cholesteatoma in my NHS practice, both medically and surgically. It's a condition I'm very familiar with, and once it's been identified the principles of management are clear. What it really benefits from is a careful examination, an experienced eye, and a clear plan, and that is exactly what I try to offer every patient who comes to see me.
This page covers what cholesteatoma actually is, why it happens, how I make the diagnosis, and what your options are. There's a separate page on this site that goes into the surgery itself in more detail.
What is cholesteatoma?
The middle ear is normally an air-filled space lined by a thin mucous membrane and sealed off from the outside world by the eardrum. Cholesteatoma develops when ordinary skin from the surface of the eardrum or ear canal ends up on the wrong side of that barrier. Skin behaves the same way wherever it is. It sheds tiny flakes constantly. On the outside of the body those flakes just disappear into the air without anyone noticing. Trapped behind the eardrum, they have nowhere to go. Over months and years they accumulate into a slowly enlarging sac.
The trouble with that sac is what it does to the structures around it. The middle ear is a very small space packed with delicate anatomy: the three tiny hearing bones, the wall of the inner ear, the facial nerve as it runs through the temporal bone, and the thin layer of bone separating the ear from the brain. As cholesteatoma grows, it can erode any of these. That sounds dramatic, and the worst-case scenarios are real, but it's worth keeping the timescale in mind: this is generally a slow process, and most cholesteatomas are picked up well before any of the more serious problems develop.
Cholesteatoma is benign. It doesn't spread to other parts of the body the way a cancer does. But it doesn't go away on its own either. Once it's there, it needs dealing with.
Why does it happen?
Most cholesteatomas can be traced back to long-term problems with the Eustachian tube, the small tube that ventilates the middle ear (there's more on this on my Hole in the Eardrum page).
The most common pattern is years of poor middle ear ventilation. With persistent negative pressure inside the middle ear, part of the eardrum gets gradually pulled inwards into a small pouch, called a retraction pocket. Skin debris collects in the pocket, can't get out, and the sac slowly enlarges from there.
Sometimes cholesteatoma develops through a long-standing hole in the eardrum, with skin from the ear canal growing inwards into the middle ear through the hole. And occasionally cholesteatoma is congenital, meaning present from birth, and shows up in childhood as a small pearly white lump behind an otherwise normal-looking eardrum. This is uncommon but it does happen.
The common thread in all these cases is the same: skin ends up somewhere it shouldn't be, and the body has no way of clearing it.
What are the symptoms?
The classic combination is a discharging ear and gradually worsening hearing on the same side. The discharge is often what brings people to see a doctor. It tends to be persistent, sometimes has a distinctive smell, and crucially it doesn't fully clear up with standard ear drops. That last point matters: an ear that keeps discharging despite proper treatment is one that deserves a careful look.
Other things people notice include a feeling of fullness or pressure in the ear, ringing or buzzing, and sometimes a sense that something just isn't right with that ear, even before any of the above become obvious.
Pain is not usually a feature. When pain does come into the picture, it's most often because of a secondary infection sitting on top of the cholesteatoma, and this is an important point.
Cholesteatoma and recurrent ear infections
A cholesteatoma is, in effect, a pocket of trapped skin debris that sits in a warm, slightly damp place. That's exactly the kind of environment bacteria like, and infections on top of an underlying cholesteatoma are common. The pattern is usually one of recurring or persistent ear infections that respond to treatment in the short term but never quite go away: they settle, then come back, then settle, then come back.
This is one of the reasons I'm so careful about examining any ear that's had repeated infections. A single, isolated ear infection is usually nothing to worry about. But infections that keep returning in the same ear, particularly with discharge that has any sort of smell to it, deserve a proper look under the microscope rather than another round of drops. Cholesteatoma is one of the diagnoses I'm always thinking about in that situation, and it's the kind of thing that's easy to miss without good equipment and time to look properly.
If you've been treated for repeated ear infections without anyone really getting to the bottom of it, it's worth coming in for a thorough assessment.
Why is it important to treat?
The reason cholesteatoma can't simply be left alone, even though it's benign, is what it does to the structures around it.
Erosion of the small hearing bones is the most frequent of these consequences and isn't all that uncommon in cholesteatoma, particularly in disease that has been there for some time. The good news is that this isn't necessarily the end of the story for the hearing on that side. If one of the bones has been eroded, a repair can often be done, a procedure called an ossiculoplasty. Whether this is done at the same time as removing the cholesteatoma, or as a planned second-stage operation a few months later, really depends on the extent of the disease and how confident we are that all of it has been cleared. I'll go through the timing with you in clinic.
The other potential complications are less common but do need mentioning. Cholesteatoma can:
Reach the facial nerve as it runs through the middle ear, which can affect the muscles of the face
Damage the balance organ in the inner ear, causing dizziness or unsteadiness
Very rarely, erode through the bone separating the ear from the brain, which can lead to serious infections
These rarer complications are usually only seen in disease that has been there a long time without being picked up, and most patients are diagnosed and treated well before any of them happen. But once they do happen, most can't be undone. That's why the standard advice is to treat cholesteatoma once it's been identified, rather than wait and see.
How extensive can it be?
The size of cholesteatoma varies enormously between patients, and that's one of the things that makes a careful assessment so important.
At one end of the spectrum, some cholesteatomas are very small and very localised, for example a small early retraction pocket with a little debris in it. In a few of these cases, all of the disease can be reached and cleaned out in clinic with microsuction under the microscope, with regular monitoring afterwards to make sure nothing has been missed and that things stay stable. This is more the exception than the rule, but it's a genuine option in the right patient.
At the other end of the spectrum, cholesteatoma can extend well beyond the middle ear into the mastoid bone behind it, wrap around the hearing bones, sit against the facial nerve, or reach the inner ear or skull base. These cases need fuller surgery to clear properly.
Working out which type you have is one of the main reasons for arranging a scan before any surgery is planned.
How do I make the diagnosis?
The diagnosis is usually made in clinic, by examining the ear under a microscope. Cholesteatoma has a recognisable appearance to an experienced ENT surgeon, typically a white or cream-coloured sac with skin debris, often with some discharge, sitting in or near a defect in the eardrum. With a proper microscope view and an unhurried examination, it's generally not difficult to spot.
The tricky cases are the ones where the disease is small, deep, or partly hidden under crusts and discharge. These are where experience matters and where the clinical examination needs to be backed up with imaging.
What scans might I need?
There are two scans used in cholesteatoma, and they each have a different job:
A CT scan is essentially a detailed X-ray-based scan that shows the bony structures of the ear beautifully. A CT is always done before surgery so I can see the full extent of the disease, plan the operation properly, and identify the position of important structures like the facial nerve, the inner ear, and the bone separating the ear from the brain.
An MRI scan gives much better detail of soft tissue. A specific type of MRI sequence, called diffusion-weighted imaging, is particularly good at picking up cholesteatoma tissue itself. MRI is most useful in following patients up after surgery, because it can detect small areas of recurrent cholesteatoma without anyone having to undergo another operation just to check.
I'll arrange whichever scans are needed at the right stage and go through the results with you in clinic.
Can cholesteatoma be treated without surgery?
For most patients, the answer is no. Cholesteatoma is a structural problem: there's skin where there shouldn't be skin, and no medication or ear drops can reverse that.
There are two situations where a non-surgical approach is sometimes considered. The first is very small, localised disease that can be reached and cleared in clinic, with regular check-ups afterwards. The second is in patients who aren't well enough to have a general anaesthetic, where keeping the ear clean and treating infections as they come up is the best practical option.
For everyone else, the definitive treatment is surgery to remove the cholesteatoma.
What does the surgery involve?
The principle is simple, even if the operation itself can be involved: remove all of the cholesteatoma, deal with any infected tissue, and leave a safe, healthy, dry ear.
The exact operation depends on how extensive the disease is. Some cases can be dealt with through a relatively limited approach down the ear canal. More extensive disease needs a fuller procedure that includes opening up part of the mastoid bone behind the ear for proper access. If any of the small hearing bones have been eroded, reconstruction (ossiculoplasty) may be done at the same operation or as a planned second stage a few months later. The timing depends on the extent of the disease and is something I'll discuss with you.
Hearing improvement is a secondary aim. The priority is always to get all the disease out and leave a safe ear. Hearing outcomes are variable and depend on what state the hearing structures are in by the time we operate.
There's a separate page on this site that goes into the operation in detail: what to expect, recovery, risks, and follow-up.
Will I need long-term follow-up?
Yes. Cholesteatoma needs proper follow-up after surgery, sometimes for several years.
There are two reasons. The first is that cholesteatoma can come back: sometimes a tiny remnant has been left behind during surgery (residual disease), and sometimes a fresh retraction pocket forms in the years that follow (recurrent disease). The second is that the operated ear needs to stay healthy, and any new symptoms need to be assessed properly rather than written off.
Follow-up usually means regular examination of the ear in clinic under the microscope, hearing tests at intervals, and one or more MRI scans over the years following surgery to check that no cholesteatoma has come back. The exact pattern depends on what was found at surgery and how things settle, but it's not unusual for follow-up to continue for several years. This is something I take seriously: getting the operation right is only half the job, and good long-term care is what gives patients the best outcomes.
When should you come and see me?
Come and see me if:
You think you may have a cholesteatoma
You've been told you have a cholesteatoma and want a clear plan from someone familiar with the condition
You've had cholesteatoma surgery in the past and want experienced long-term follow-up
You have an ear that keeps getting infected, or that has a discharge that won't settle properly with drops
You have a long-standing hole in the eardrum and want it assessed properly for any sign of cholesteatoma
You've been told it's nothing serious but feel that something isn't right with one of your ears
I'll examine your ear under the microscope, arrange whatever scans are needed, and talk you through what we've found in plain language. You'll leave the appointment with a clear understanding of what's going on and a plan that makes sense for you.
Helpful resources
Disclaimer
This page is intended as general information only. It does not replace a consultation, examination, hearing assessment, or individual medical advice. If you have been diagnosed with cholesteatoma, or have symptoms that might suggest it, please get in touch to book an appointment so I can examine your ear properly and give you advice specific to your situation.