Re: Feared diagnosis of Cholesteatoma.

[Guest guest]

Hi my name is Viv we live in Laurieton on the Mid North Coast.We

have an 11 year old son Brice who has had 2x cholesteatoma's in 3

almost 4 years.We have no faith in our ENT up here and have been under

Dr Curotta at Westmead Childerns Hospital for well over a year now.We

also see Dr mutton at the deafness center there. I know how you are

feeling.If I can help in any way let me know.I also look for help and

answers so you are not alone.

Viv

>

> Hi,

>

> I am residing in Sydney, Australia (Epping), and I am absolutely

stressed out upon hearing

> my 3 year old has cholesteatoma. I have never heard of this before,

and the more I read

> about it the more scared I get about.

>

> I was referred to an ENT ( Dr J Motbey) who fears my daughter may

have it, and has

> suggested a myringotomy & a tube insertion.

>

> I have decided to seek an opinion of another ENT (Prof B Gibson) to

see what he has to say.

>

> Can anyone recommend a good surgeon in Sydney who has experience in

treating

> cholesteatoma.

>

> Eargerly await any responses.

>

>

>

[Guest guest]

Hi ,

I think your getting a second opinion is very wise. There is usually

only one treatment for cholesteatoma and that is surgical removal. I

guess your Dr. Motbey may have his reasons for putting in a tube

(myringotomy), but everything I've ever heard or read would lead me to

believe that it wouldn't address the issue of the cholesteatoma. The

good thing of the whole situation is, if it's cholesteatoma, it is

serious but treatable. Another good thing is that many kids seem to

deal with the surgery better than folks like me in my late forties.

I see that Prof. Gibson is at the Royal Prince Alfred Hospital. You

might have a better idea than us about the hospital's reputation. That

might help. You might stress to Prof. Gibson that if he is sure it's

cholesteatoma that you would like a very experienced otologist to handle

or lead the surgery (in a teaching setting) - and that could be him or

he might refer you to who he feels is the best. Other specialties that

might also be helpful are neurotology or pediatric otology. It would

appear that the degrees that the doctors hold in Australia are a bit

different than what we're used to in the USA. I came across this

person's write-up where she explains that she did more than 60

operations for cholesteatoma last year. To me that seems like a lot.

She probably devotes at least an entire day to surgery each week - that

seems to be what my doctor does. It's likely that she does other

surgeries as well. Then consider their office appointments and time for

reading and writing medical papers. That's a full schedule. Here is

her write-up:

http://www.ruh.nhs.uk/departments/ent/staff/annette_jardine.htm

I think most of us on this listserv would agree - experience counts for

this disease. I sincerely hope that your little girl doesn't have

cholesteatoma, but if that is what it is ... just face it head on and

instill in your daughter (when she's old enough) that this something to

keep on top of. Routine visits to the otologist are a very good thing.

Oh, there is a fiction book that has a cholesteatoma theme that was set

in Australia. It's " The white earth " by McGahan. After dealing

with this stuff, I just had to read it on vacation a couple years back.

It was an okay read - it certainly held my interest.

</uhtbin/cgisirsi/n6LtPppgla/HUNT/53400013/18/X245/XTITLE/The+white+earth+%5E2F>

All the best,

Matt

jennykoksal wrote:

>

> Hi,

>

> I am residing in Sydney, Australia (Epping), and I am absolutely

> stressed out upon hearing

> my 3 year old has cholesteatoma. I have never heard of this before,

> and the more I read

> about it the more scared I get about.

>

> I was referred to an ENT ( Dr J Motbey) who fears my daughter may have

> it, and has

> suggested a myringotomy & a tube insertion.

>

> I have decided to seek an opinion of another ENT (Prof B Gibson) to

> see what he has to say.

>

> Can anyone recommend a good surgeon in Sydney who has experience in

> treating

> cholesteatoma.

>

> Eargerly await any responses.

>

>

>

>

--

[Guest guest]

,

It would appear that the link to the doctor in my earlier message is a

doctor in the UK ... not Australia! Best of luck with Prof. Gibson - I

hope he turns out to be a good contact for you.

Matt