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My Son Had a Cholesteatoma: A Case Study

By: Kathryn Senior PhD - Updated: 11 Mar 2013 | comments*Discuss
Cholesteatoma Ear Drum Skin Cells

Chris has just dropped her son James off at football practice. “He will never be in the top league, but he enjoys playing with his friends in the under 10 team and they are aware of his hearing problems, and they support him very well,” she says.

James has poor hearing in his right ear, but his left ear seems to be normal. Unusually, he had a condition at birth, which has meant three operations to treat a cholesteatoma, an overgrowth of skin cells behind the ear drum.

Constant Ear Infections

When James was first born, Chris and her partner Joe had no inkling that there was a problem until their baby started to get ear infections. “I know this is a very common problem in small children, but James’ right ear was always a problem. Even as a tiny baby, he would scratch at it and was very fretful. When he was three, we had been going to see the GP so often, she decided to refer James to an ear, nose and throat specialist to see if there was a reason for all the infections,” explains Chris.

James was seen within three weeks, and the consultant made some immediate observations that meant that James had to go into hospital overnight for tests. “She had noticed that the muscles in James’ face, on the right side, were weaker than those on the left, and this made her suspect that there was a problem in the inner ear,” says Chris.

Hospital Tests Reveal a Cholesteatoma

Part of the investigations included a hearing test, which confirmed that James was having problems hearing properly with his right ear. “At first, we thought that he had some sort of chronic infection, but then the consultant explained that they were going to take a sample of tissue from James’ ear because they suspected a rare condition that might need to be treated by an operation. We were then very worried – I think both of us thought that James had a rare form of childhood cancer. It was a very long two days,” she remembers.

James’ grandma looked after him at home while Chris and Joe went back to the hospital to have a meeting with the consultant. “She was very kind – I was extremely emotional as I was dreading the news we were going to get. She told us that James had a growth, but that it wasn’t cancerous at all. It was a congenital form of a cholesteatoma, which can form at any time and at any age. James had developed it from birth because some of his skin cells had become lodged behind his ear drum as he grew in the womb,” says Chris.

Treating Cholesteatoma

The consultant explained that skin cells aren’t supposed to grow behind the ear drum but, when they do, they can’t escape anywhere. Skin cells are produced all the time and then the dead ones from the top of the skin, die and slough away. Dead skin cells are what make up most of the dust in our homes.

When skin cells grow inside the inner ear, they can’t slough off; they just build up and start to affect the bones of the inner ear and clog up the ear canal so that sound cannot be transmitted as efficiently. Left untreated, a cholesteatoma can actually destroy the bones completely, so treatment is advised, and as soon as possible in congenital cases.

“The consultant explained that James would need surgery to remove as much of the abnormally sited skin cells as possible – and then he would need to be monitored over the next few years to make sure it didn’t grow back,” says Chris.

Successful Surgery

Three months later, James was operated on to remove his cholesteatoma. Fortunately, it was relatively small but it had started to damage the bones, which meant that, although the growth has not returned since, James needed more operations to correct the damage. “It was a case of saving as much of his hearing as possible, rather than restoring his hearing to perfect levels. It has been hard on him though, but he takes it all in his stride. At least his has normal hearing in his left ear and there is no sign of any problems with skin growth there,” reports Chris.

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