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Re: Introducing myself - cholesteatoma

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Hi ,My 8-year old daughter had canal wall down surgery in April for a fairly large cholesteatoma, similar to your daughter's in that the stapes was largely eroded away and the other ossicles were involved as well. Prior to the surgery, she had about a 50% hearing loss in that ear. Her hearing will be tested before her second-look surgery in December, which is to see if the cholesteatoma has returned and to try to do some further reconstruction. Our surgeon has told us that it is possible her hearing can be improved, but we shouldn't bank on it. The hearing loss does not seem to affect her too much as far as daily life, but I do notice that if there is background noise, like the radio on in the car, it is more difficult for her to hear me. From what I understand, cholesteatomas are less likely to return with canal wall down surgeries, so I am hopeful that this is behind us, but I worry, too. Hope your daughter has a speedy recovery! :)DianeOn Aug 18, 2011, at 8:53 AM, risky_fairy wrote: Hi, my 11 year old dd had mastoid surgery on Monday where an extensive cholesteatoma was found and removed. It had already absorbed the stapes and was attached to the remaining ossicles. What level of hearing loss should we expect? The surgeon tells us that he can do reconstructive surgery at a later date but my research suggests that this is not so successful when it includes the stapes. Is this right? If reconstruction is possible how long after the surgery should it be done? I'm concerned that the c-toma may return. A canal wall down procedure was done and she is due to return to have the dressing in her ear removed in 4 weeks so hopefully we'll find out more then. Oh, we are in the UK.

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  • 2 weeks later...

Personally I would not suggest reconstruction surgery for those who have

reoccuring cholestetoma, as in my case it only caused the disease to come back

repeatedly. A total of six times to be exact. Only after total mastoid surgery

without reconstruction did it finally stop. I only have inner ear hearing now

but I hardly notice the loss.

>

> Hi, my 11 year old dd had mastoid surgery on Monday where an extensive

cholesteatoma was found and removed. It had already absorbed the stapes and was

attached to the remaining ossicles. What level of hearing loss should we expect?

The surgeon tells us that he can do reconstructive surgery at a later date but

my research suggests that this is not so successful when it includes the stapes.

Is this right? If reconstruction is possible how long after the surgery should

it be done? I'm concerned that the c-toma may return. A canal wall down

procedure was done and she is due to return to have the dressing in her ear

removed in 4 weeks so hopefully we'll find out more then. Oh, we are in the UK.

>

>

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I think it's important to note that each situation is likely to be

different. The cause of recurrence is not understood well and I'm not

sure we should blame prostheses for it. If a single diseased cell is

left behind, it can supposedly regrow. Cholesteatoma can vary widely in

the way it grows, what it destroys, etc. In many cases, reconstruction

can and should be done. This is a decision that should stay in the hands

of the surgeon that is able to see the situation first hand. I have a

prosthesis in my right ear that works very well, but it scares pretty

much any doctor or nurse that looks at it with the exception of my

neurotologist ... and hopefully other neurotologists. I did have a

recurrence, but we dealt with it and gave the prosthesis another try.

That's been going well for ten years now. My neurotologist also made the

decision to reshape the bones in my left ear and give that a try. The

results there are a little disappointing, but my ears are healthy for now.

Sammantha wrote:

>

> Personally I would not suggest reconstruction surgery for those who

> have reoccuring cholestetoma, as in my case it only caused the disease

> to come back repeatedly. A total of six times to be exact. Only after

> total mastoid surgery without reconstruction did it finally stop. I

> only have inner ear hearing now but I hardly notice the loss.

>

>

> >

> > Hi, my 11 year old dd had mastoid surgery on Monday where an

> extensive cholesteatoma was found and removed. It had already absorbed

> the stapes and was attached to the remaining ossicles. What level of

> hearing loss should we expect? The surgeon tells us that he can do

> reconstructive surgery at a later date but my research suggests that

> this is not so successful when it includes the stapes. Is this right?

> If reconstruction is possible how long after the surgery should it be

> done? I'm concerned that the c-toma may return. A canal wall down

> procedure was done and she is due to return to have the dressing in

> her ear removed in 4 weeks so hopefully we'll find out more then. Oh,

> we are in the UK.

> >

> >

>

>

--

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We also have had recurrance with and without a prosthesis, so I think it has more to do with the specifics of your ear.

 

Chloe really enjoyed the year that she had a working prosthesis. We are not currently pursuing that, but certainly open to it in the future. For now, she has a hearing aid available to her if she wants it.

 

The most recent prosthesis is not working because the cartilage that should be supporting it is laying down. As long as there is nothing else in there, we can live with this!

On Sat, Aug 27, 2011 at 5:07 PM,

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