1. Health
Send to a Friend via Email

Cholesteatoma

Experience with hearing loss

By

Updated October 02, 2013

I am not able to wear conventional hearing aids due to the recurrent tumors and my allergy to the materials that earmolds are made of. So for those of you who have the symptoms listed in the article I am responding to, don't wait, demand the CT/MRI or wait to die a silent or harsher death by meningitis, etc. Take it from one who has been through 10 surgeries and waiting for No. 11.

The cholesteatoma tumor is not an infection, it is the build up of squamous skin cells that pack into a mass. If you get an ear infection and bacteria gets embedded in the mass it will do more damage, as it is the bacteria that erodes the bone. If no bacteria gets in, then it just grows until it involves the other parts of the ear and creates symptoms requiring it to be removed. So take care of your ears and have them checked regularly as hearing is a precious gift from God.

I will always carry the memories of crickets chirping and the birds singing, the rustle of leaves, and the first cry of newborn life (puppies, kittens, and a baby crow that fell from it nest and the adults would not allow me to help). For I know I will lose my hearing someday soon.

*****

A mother shared her child's experience:

My son was constantly complaining of ear pain, I took him repeatedly to his primary care doctor and she would say over and over again for two years that he doesn't have an ear infection. She would tell me he has a lot of wax buildup in his ear. One time she had the nurse irrigate his ears saying it would clean out his ear -- it didn't. She told me to use liquid stool softener to keep the wax soft so it would drain. A nurse irrigating his ear at one visit poked his eardrum. After that it was very hard to get him to sit correctly and quietly to have his ears checked. I repeatedly asked for a referral to an ENT but she insisted he did not need an ENT.

On one visit I took a sample of what came out of his ear -- it was clearly tissue, not wax. Yet again, I was told to keep using the stool softener. Finally on his next visit he had a new doctor. I explained my concerns to her and she looked at his chart. She gave us the referral on that first visit. So finally I thought we will get this taken care of.

On the first appointment the doctor talked about a possible cholesteatoma. So then we went through five sets of tubes in his ear, tonsils and addenoids removed. Another two years passed and we got a referral...She scheduled hearing tests, and a CT scan. Finally a diagnosis and course of treatment -- he had a mastoidectomy with a tympanoplasty.

He has hearing that comes and goes in that ear. He will have to have a second surgery to try and restore hearing. We now go three months between appointments instead of every month or more. Now if I could just get the school district to realize he has a physical disability, not a learning disability. Maybe they will supply the ALD that he needs to learn.

Do you have or have you had, a cholesteatoma? Send your experience to About.com Deafness/HOH for addition to this article.

©2014 About.com. All rights reserved.

We comply with the HONcode standard
for trustworthy health
information: verify here.