Anyone Know Anything About a Cholestiotoma in the Ear & the Surgery Needed??

Updated on March 16, 2008
D.C. asks from Shingle Springs, CA
4 answers

My 7 year old daughter was just diagnosed with a Cholestiotoma in her left ear. The doctor wants to do surgery pretty soon. He thinks this was going on since she was a baby and so she has had no symptoms. She has major hearing loss in that ear, but it hasnt bothered her since the right ear has adjusted to accomodate hearing. Im so lost and confused and scared....please, any advice would be GREAT!

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answers from Modesto on

Hi D.!

If I remember correctly, Cholestiotoma is a "build up" inside on the eardrum. Yes, it can cause a hearing loss, but if I remember correctly, once it is removed, a portion (if not all) of the hearing can be restored. Don't take my word for sure, but I'm pretty sure that this is correct.

It's always scary when we have to face a surgery, let alone one for our children. I worked very closely with ENT (Ear, Nose and Throat) Dr's for 7 years, and learned that most of these childhood procedures are pretty "easy" for the Dr's and very routine.

My first question is...are you comfortable with her Dr? Do you trust him as a professional? If you answered NO to either of these questions, then you need to find a Dr you can answer YES to these questions first. It's all in the "peace of mind" for the parent.

Your Dr should be able to show you two hearing tests, one "presently" with the build up, then what the hearing loss will be without the build up inside (there is a way for a professional Audiologist to do this). Is there an Audiologist in your Dr's office, or do you have to have a seperate office visit for it?

I still have my contacts with a few of my professional friends in the ENT department where I used to work before becoming self-employeed. If you feel like you need any other information, simply reply back to me, and I will find out more info for you. 15 years ago, I would've been able to answer all your questions, but I'm a bit out of touch with it now :o) but would be willing to help you if you need it.

But for now, relax, as in most office's, this is pretty "routine".

I'll be here for you if you want :o)




answers from Salinas on

Hi D.,
I went through the same thing with my now 9 yr old daughter. She on the other hand had ear infections in her right ear since she was 6mths old. So her hearing bones were eaten away from all the infections and the Cholestiotoma. We had a great ear surgeon at Childrens hospital in Washington St. She took out the Cholestiotoma and then in the second surgery put in Titanium hearing bones in that ear. She went from almost no hearing to 99.9% hearing. We have had no infections since the surgery and that was almost two years ago. So I can't say enough but be sure you get a doctor that specilizes in this procedure.
Good luck,



answers from San Francisco on

Cholesteatomas can be fatal in extreme cases. This is not something you want to mess around with. However, in the hands of a skilled otologist (who is an ENT who specializes only in ears) they are very treatable. Also, you may want to investigate a BAHA device or hearing aid to restore the hearing on that side. There are many recent studies that suggest that children with untreated single sided hearing loss are twice as likely to end up in the ER, ten times as likely to be held back a grade, and as adults, earn $8,000 less than their normal hearing counterparts even after adjusting for geography and education.



answers from Stockton on

My son S.J. had colestetoma and the doctor said it was the worst case he had ever seen. Same issue in that it was noted when quite young after he had some ear infections. The disease is like a cancer that grows in layers of skin and can evelope over areas and destroy them thus the loss of bone structure to hear. He has had surgeries to remove the growth and now is 24 years old and hears well with his right ear. It is good to remove it, so it does not continue to spread into other areas. He recovered well from all surgeries and went in periodiclly to clean out the ear canal. Check webmd.

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