I think my son has Cholesteatoma, He just had his 3rd set of tubes put in on Friday and we seen a new ent right out of school just got his liscense and he had said he wanted to perform a ct on the bones behind my son's ears so we said ok.  After surgery he came to us and said he seen infection and he will need another surgery he is suppose to talk to us about this next week when he gets the full results back.  I have been reading online and found alot of stories about this Cholesteatoma. I'm not sure now if that is what he has or not but was wondering if it sounds the same.

My son is 9 years old and is special needs he has never learned to talk since birth and he has had frequent ear infections over and over for the past 6 years. He even has a caluflower ear from hitting it so much. 

I'm from Wyoming and was wondering if any one on here knows of a good doctor in Salt Lake City or around there who is able to perform this surgery correctly and knows what he is doing?  Thanks for you time. Johnetta

momtoanangel momtoanangel
2 Responses Mar 1, 2009

I know it was ages ago. I hope all is well with your son, if he still has it you will be an expert by now. My daughter has had it now for 11 years, I do hope your son is better and that the peventaitive care is good

Hi Johnetta,<br />
<br />
Since so much time has passed, I'm hoping you have already found a good doctor. From my experience with my daughter's cholesteatoma, they should have seen it in the CT scan if your son has them. The space behind my daughter's ear drum was completely filled with them, and they had dissolved her hearing bones. I'm not sure how frequently this occurs, but her most apparent symptom was a horrible odor from the affected ear. I've read that others have this symptom, but probably not all. Anyway, good luck with your son, and I hope you have found some relief for him.