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3a. Intro

Posted by: " carfar650 "

Hello !!

I may be having cholesteatoma surgery soon. My Dr. is trying to get my

ear as healthy as possible from a current infection before making any

major decisions, but it looks as if that is where I am headed. She has

stated usually that this will take two surgeries to correct, is that

been your general experience ? I have been warned that the first one

may actually leave hearing worse until the removed structures are

rebuilt ? This is all very frightening and am wondering what

hearing loss anyone experienced after even the second surgery ? and

perhaps just some general things to expect.

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My cholesteatoma wasn't diagnosed for about ten years, my otologist

said. The only reason I was diagnosed is because I was in incredible

pain from an ear infection in my late thirties. My internist

prescribed drops that didn't work. Of course they wouldn't, they

couldn't because they couldn't penetrate the c-toma. He told me he

could refer me to a specialist " if I wanted to " . I certainly did, as

I had had chronic ear infections my entire life. The ENT tried to

suction my ear and couldn't get very far. He immediately told me that

he knew what I had, briefly explained c-toma, and referred me to an

ENT surgeon. In the meantime, I had consulted Dr. Google and knew

what I was in for.

I had to wait three weeks for my infection to clear pre-op. I had my

first surgery and my malleolus was eroded. The growth was within

millimeters of the dura, the membrane that surrounds the brain. The

next step would have been meningitis, a life threatening condition.

That's why the post-op patients on this list are so adamant about

surgery without delay. This Monster doesn't go away by itself.

My wonderful surgeon had told me before the surgery that I would have

two stages of procedures. They wait to see if there is any regrowth,

and do reconstruction if needed. By the time I had my second surgery,

my other two ossicles (middle ear bones) were gone. The hearing loss

wasn't too bad postop. The only trouble that I had was triangulating

sound. I couldn't tell from which direction a sound originated.

Also, stereo sound was useless. Cholesteatoma tends to act as a

sound conductor, the same way as ossicles. I ended up having a TORP,

which is a total ossicular replacement prosthesis. I could hear well

after that, but after subsequent surgeries and multiple grafts, my

eardrum has thickened and isn't conducting very well. I'm ready for a

hearing aid. Of course, everyone is different.

I was amazed at how well I felt after I was discharged from the

hospital, considering they went in through the back of my head. My

left sided taste nerve had to be removed during my first surgery as

the growth was completely wrapped around it and couldn't be removed.

My sense of taste is gone on that side. I had a metallic taste in my

mouth, but that went away.

This is a wonderful group, full of good resources and information.

The whole c-toma thing is really scary, but we'll help you get through

it the best we can.