Recurrence in Right Ear, New Cholesteatoma in Left Ear

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Hi

Firstly, apologies for the lengthy post.

Introduction:

I had a Cholesteatoma diagnosed in and removed from my right ear in 1999. After

a few problem-free years, I've had an almost constant stream of infections and

perforations - I would hate even to guess how many! For years, I've had the

usual check-ups with my ENT surgeon (a renowned neurotologist down here on the

south-east coast of England) and have had the usual micro-suction to clear the

debris from previous perforations and other such matter from my ears. A few

years ago (4 or 5 at least, if memory serves me right), my surgeon told me I

have an attic retraction pocket in my right ear and over the past 3 or so years,

I've had infections and perforations in my left ear too.

Current Situation:

This week, I had another of my 'usual' check-ups with my ENT Consultant and

after an extremely uncomfortable (quite painful, if I'm honest) micro-suction

session, followed by an examination of both ears under the microscope, we

discussed my current situation and the state of my ears. It was then that he

actually confirmed that the attic retraction pocket indicated a likely

recurrence of the right-side Cholesteatoma of years gone by. (I think he had

mentioned this before, but never in so many words, and I hadn't pursued it,

believing that worrying about things would not affect them.) When he compared

the current state of both ears to each other, he said the left was 'as bad as'

the right. 'Keratinous squamous epithelium' (I think I have that correct!) has

'smoothed' the shape of my internal ear over the years so much so that it looks

like it's been operated on (!) and he said he can now say it's likely I have a

Cholesteatoma in my left ear, too. These likely diagnoses have been made purely

from symptoms and this 'smoothing' within the ear, not from visually seeing any

actual Cholesteatoma or by use of scans. He said that both ears will continue

to be 'managed' in clinic by micro-suction and regular examination under the

microscope; he won't be seeking to operate immediately.

It was only after I got home that I managed to digest what he had said. Over

the years I've been a member of this group, I myself have often read (and

voiced) that surgical removal of Cholesteatoma is the only successful treatment

of this disease. To stop it doing damage, it MUST be removed... fact! However,

now my own doctor has joined the ranks of the caregivers of some of this group's

members in suggesting that management rather than surgery is the way to go - for

now, at least. I will be querying this when next I go back to see my ENT

Consultant; I don't doubt his ability to make the correct decision in respect of

my proper care, but here in England, we are all too aware of funding (or the

lack thereof!) within the National Health Service and this could be an effect on

his decision, though I would like for him to explain this to me when next I see

him.

My hearing loss has been progressive over the years; however, I am a Baha user

of 7 years standing (like many Cholesteatoma patients, I'm unable to tolerate

BTE hearing aids), and the effects of my hearing loss in my everyday life is

currently quite adequately addressed, though I have noticed occasions when I

could do with being aided on the left side. This is something I will take up

with my surgeon and audiologists when I'm next up at the hospital.

I'm not desperately upset or concerned about all of this; I think 'dismayed' is

more the word I would use to describe how I'm feeling, despite having had a

suspicion or two for the last few years that the monster was back.

Kazzy

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