Knowledge Of Rare Risk Of Cholesteatoma For Ear Tube Patients Important

By Nancy K. Crevier

Parents want their child to be the one who stands out, the one in a hundred who is set apart from the others… Unless that statistic is a medical statistic, as Debbie and Dan Holmes learned when their 9-year-old son was diagnosed with a cholesteatoma last year.

“That’s the statistic that floored me, when Dr [Marc] Eisen of Hartford Hospital told us,” said Ms Holmes. “One in a hundred children have a cholesteatoma due to ear tube insertion surgery.”

A cholesteatoma is a skin cyst or growth that forms in the middle ear, often the result of complications from chronic ear infections, a poorly functioning Eustachian tube, or from a congenital defect in the ear. Dead cells that accumulate over time in the middle ear, and which are not expelled, create the problem. A cholesteatoma is not a tumor, precisely, although it can act as one does, nor is it a cancer.

It does have great risks associated with it, however. Untreated, a cholesteatoma can cause vertigo, deafness, facial paralysis, or in the worst-case scenario, the infection can spread, causing meningitis or a brain abscess, and death.

What will not be found easily online or in a doctor’s office, said Ms Holmes, is the connection between ear tubes and the formation of a cholesteatoma. “What I understood Dr Eisen to explain to us, is that in an ear tube insertion surgery, when the tube is put through the eardrum, it can cause skin to slough off and go to the back of the ear canal. That can become infected and grow into a cholesteatoma. When he said this happens to one in a hundred children who have ear tube surgery, I almost fell over. That seems like a really high number to me. Why don’t ENTs [ear, nose, throat specialists] tell you about this risk [when recommending ear tubes]?” she asked.

Dr Eisen, an otologist specializing strictly in diseases of hearing and balance with Connecticut Ear, Nose and Throat, clarified that while 95 percent of people with acquired cholesteatoma are people who have had tubes, cholesteatoma is indirectly related to ear tubes. “The issue is the hole in the ear, rather than the cholesteatoma,” he said. “If the hole stays open — which is really once in a blue moon — when the grommet falls out, that can set a child up for a cholesteatoma. If a child had ear tubes, or had chronic ear problems as a small child, parents should be aware that cholesteatoma is a problem that can arise in the older child,” said Dr Eisen. The good news about ear tubes, he said, is that it helps young children get rid of hearing loss issues that can lead to developmental problems.

“One in one hundred people is a perfectly acceptable number,” he said, noting that ear tubes are not put in without good reason. The benefits of having tubes inserted outweigh the risks, overall, said Dr Eisen.

For the Holmeses and their son, it has been a nine-year merry go round of pediatric visits, ENTs, and a constant flow of antibiotics into the young boy’s system.

Their son was just one month old when he had his first ear infection, recalled Ms Holmes. At three months of age, he had his first set of ear tubes inserted, a procedure that the surgeon later told her had been his first on so young a child. “Ear tubes are so common, that as a mom you go on the advice of your pediatrician and ENT, and figure it’s the best way to resolve the problem. You do ask about risks, and are told about anesthesia, there may be some bleeding, or the tubes might fall out. But never this, never cholesteatoma,” she said.

Those first tubes stayed in for about a year and a half, and like the second set, inserted when their son was 3 years old, seemed to help initially. But he continued to get ear infections. “We kept needing more and more antibiotics. I felt like we had an oil tank in the back yard filled with amoxicillin. I was thinking, what the heck is the use?” said Ms Holmes.

Her eyes fill with tears for what she did not know back then. “I feel like I was blindly following advice. Ten years out, I wish I had looked for alternatives — chiropractic manipulation of the Eustachian tube; a naturopathic doctor; checking for food allergies; even having his tonsils or adenoids removed, maybe, to open up that area. I’ve always been a mom who tries to do the right thing,” she said. Had she known that a cholesteatoma was even a possibility, she said, ear tubes would have been her last resort. “But it seemed so common. Everyone seemed to get ear tubes put in when their kids kept getting ear infections. I didn’t know to ask about other complications….”

By the time the second set of tubes came out, followed by more years of antibiotics and constant trips to the doctor, the Holmeses were feeling a bit cautious. When their ENT suggested a year ago that it might be time to consider a tube in the left ear, they reluctantly agreed to the third surgery.

“A week before that surgery, my son came to me and looked at me, and then there was something in the way he said, ‘My ear really hurts’ that caught my attention. He is a very easy-going kid, and despite everything he doesn’t complain. I thought, ‘Something is up,’” said Ms Holmes.

She demanded one more check up before the surgery, and it was then that the ENT ordered a CAT scan and discovered the cholesteatoma on the mastoid bone. “The infection was eroding the bone,” said Ms Holmes.

“If we can let all of the parents [considering ear tubes] know of the risk, knowledge is not a bad thing,” said Dr Eisen, “but I don’t want to create fear over this very beneficial surgery.” It is more important, he stressed, to say that parents should know that the hole might not close up, and that then there might be issues to deal with.

If an older child who no longer has tubes in the ear, but did have tubes, has symptoms of chronically draining ears, hearing loss, or vertigo, it may indicate the formation of a cholesteatoma. “I think that the Holmeses’ child worked through this in a typical fashion,” said Dr Eisen. A cholesteatoma usually occurs in an older child, not immediately after having tubes inserted.

In March 2010, a portion of the mastoid bone that was infected was removed through a long incision behind the Holmeses’ son’s ear, and that piece of bone was replaced with a titanium implant. He has suffered a slight hearing loss in that ear, and has had to give up his dream of becoming an Olympic swimmer. He is sensitive about the problem, and does not want any of his friends to know about it, said his mother. “He just wants to fit in. I think if he can’t hear something, he pretends to,” she said.

How a cholesteatoma is treated is variable, depending upon how large the cyst is, how long it has been there, and the amount of damage it has done, Dr Eisen said. Like any other disease, the earlier it is caught, the better.

He cautions parents about the use of “alternative” treatments, and encourages open discussions with their personal physicians when considering treatments such as chiropractic manipulation. “Talk to your physician about alternative medicine, and be aware that information on the Internet should be taken with a grain of salt,” said Dr Eisen.

While their son has not had any ear infections since the surgery, it is not the end of this story, said Ms Holmes. “I wish this was the end, but after surgery we were told that if even one cell is left behind, it will regrow. It could be a lifelong, ongoing process, just to keep on top of it,” she said.

“We know this was not congenital with our son, and that it is likely it is the result of having ear tubes,” said Ms Holmes.

The whole ordeal has made her more cautious overall when it comes to health issues. “It makes me look at other options now, not just assume that the first thing I hear is the thing to do, and I especially look for the least invasive procedures for the children.

“I just want parents to know that cholesteatoma is a less known risk of ear tube surgery. My advice, if your kid has chronic ear infections and has had tubes, demand a CAT scan. I don’t want any other parents sitting in the office of the head of a hearing and balance department and finding out this statistic,” said Ms Holmes. “I want others to be more informed than we were.”