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Cholesteatoma: Anyone else want to talk?

Ear, Nose & Throat (ENT) | Last Active: Oct 14 1:28pm | Replies (39)

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@irene5

@angiee I just found you on this site as I was looking for something else. I am stunned by everything you have been through. When we adopted our son Yu Xia at age 6 from an orphanage in China he was deaf in one ear, had cleft lip and palate, and weighed only 25 pounds. He had many surgeries in Boston, one of which was for a rapidly growing cholesteatoma which would have killed him had they not discovered it when doing a mastoid surgery. His last surgery was at Tufts when he was in his early 20’s. Yu Xia is 30 now, and I worry about him constantly as he is pretty much non verbal so we don’t know how he feels. He lives on his own now as well. He refused his hearing aids and FM unit as a teen. He had a full ride to UCONN school of engineering but gave up somewhere along the line, and we were helpless to help him. God knows we tried! It is hard to argue with someone who doesn’t speak. We think he has late onset autism, but he was never diagnosed. Can you tell me if cholesteatoma grows back? I am guessing yes.?? Symptoms? The doctors in Boston had told us they got it all, and they were fantastic. Also, what is this titanium implant for? Thank you so much for wading through this, and thank you in advance for any info. God bless you real well! irene5

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Replies to "@angiee I just found you on this site as I was looking for something else. I..."

Hi @irene5, I'm sure you've search the Internet thoroughly. None-the-less, I thought I'd post this article about cholesteatoma from Healthline:
Cholesteatoma: Causes, Symptoms, and Diagnosis https://www.healthline.com/health/cholesteatoma

According to the article, cholesteatomas can return and it is important to catch a regrowing cyst early. I'm also @genuinekim and @judysmayo to get their experiences about recurrence and symptoms they experienced.

Irene, does your son or is your able to tell you when he is not well or is experiencing early symptoms like the ear draining a foul smellng fluid or pressure in the ear?