Worried about what the doc said about my ear.

[Guest guest]

Everything started at the age of 3 months. My dad (an alcoholic) let

a very large firework off only a few feet from my head. After that I

had constant ear infections. I had one every 2-3 months throughout

childhood. I went to several specialist and no one would diagnose me

with anything. When I was 17 years old I was at the doc for something

other than ear infection and he noticed something was different about

my ear and recomended I see and ENT. I went and he said that my ear

drum had caved in and wrapped around my hearing bones. Well 3

surgeries later and 3 fake bones later I was all better. My hearing

got better and I didn't have anymore infections. Now it has been 7

years, and my hearing has gotten weird. I went to the doc yesterday

and he looked in my ear. He looked very worried and said that I have

a large growth behind my eardrum and he suspects that is a

cholesteatoma. I have been experiencing migraines for the past 6

months so this might explain why. I have an appointment for a CT scan

and with the ENT this week. I am just nervous that my nightmare is

not over and that it is much worse this time. I really don't want to

have surgery again and I def want to keep my hearing. The thing that

makes me the most mad is that I didn't know that I was supposed to

have my ears checked regularly after my first surgeries. Very

frustrated!!! And now I am feeling pain in my ear. I think it is

psychological because there was no pain until my doctor told me that

I might have a c-toma. Does anyone know if there might be a different

diagnosis, one that might not involve surgery? Just trying to be

optimistic about this.

Thanks for listening.

[Guest guest]

Hi ,

If you really do have a Cholesteatoma, I think your only real option is to have it removed. Don't panic though, I have had 2 of these surgeries, and while I wouldn't exactly describe the process as fun, it's not that bad either. The most important thing you can do is to seek out the best qualified ENT specialist in your area who specializes in Cholesteatomas (this would usually be a neuro-otologist).

If you have to have surgery, you want someone who has a lengthy track record of success doing it. Unfortunately, in my experience, 90% of so called ENT specialists haven't a clue when it comes to Cholesteatomas. So, find a great surgeon you are comfortable with, and follow their guidance.

Good luck!

From: amandazacher <amandazacher@...>Subject: Worried about what the doc said about my ear.cholesteatoma Date: Monday, February 9, 2009, 9:30 PM

Everything started at the age of 3 months. My dad (an alcoholic) let a very large firework off only a few feet from my head. After that I had constant ear infections. I had one every 2-3 months throughout childhood. I went to several specialist and no one would diagnose me with anything. When I was 17 years old I was at the doc for something other than ear infection and he noticed something was different about my ear and recomended I see and ENT. I went and he said that my ear drum had caved in and wrapped around my hearing bones. Well 3 surgeries later and 3 fake bones later I was all better. My hearing got better and I didn't have anymore infections. Now it has been 7 years, and my hearing has gotten weird. I went to the doc yesterday and he looked in my ear. He looked very worried and said that I have a large growth behind my eardrum and he suspects that is a cholesteatoma. I have been

experiencing migraines for the past 6 months so this might explain why. I have an appointment for a CT scan and with the ENT this week. I am just nervous that my nightmare is not over and that it is much worse this time. I really don't want to have surgery again and I def want to keep my hearing. The thing that makes me the most mad is that I didn't know that I was supposed to have my ears checked regularly after my first surgeries. Very frustrated!! ! And now I am feeling pain in my ear. I think it is psychological because there was no pain until my doctor told me that I might have a c-toma. Does anyone know if there might be a different diagnosis, one that might not involve surgery? Just trying to be optimistic about this.Thanks for listening.

[Guest guest]

Hi ,

I certainly agree with . Surgical removal is the only real option

and it's not something to be panicked about. Just note that sometimes

the term neuro-otologist isn't hyphenated - neurotologist is often seen

as well. Your doctor might be a neurotologist - it would be worth

asking. I would note that some of the older doctors may have pioneered

neurotology and simply refer to themselves as otologists. The important

thing is to ensure that your doctor has training and experience with

diseases like cholesteatoma. Board certification should be a warm and

fuzzy thing.

I also feel that it's time to start being optimistic. You've been

diagnosed - so many of us went a bit long before that occurred. You

have a path to recovery - yes, it's a little scary, but you need to go

down the path and join the rest of us that are waiting to see your success.

Matt

daniel skempton wrote:

>

> Hi ,

>

> If you really do have a Cholesteatoma, I think your only real option

> is to have it removed. Don't panic though, I have had 2 of these

> surgeries, and while I wouldn't exactly describe the process as fun,

> it's not that bad either. The most important thing you can do is to

> seek out the best qualified ENT specialist in your area who

> specializes in Cholesteatomas (this would usually be a neuro-otologist).

>

> If you have to have surgery, you want someone who has a lengthy track

> record of success doing it. Unfortunately, in my experience, 90% of so

> called ENT specialists haven't a clue when it comes to Cholesteatomas.

> So, find a great surgeon you are comfortable with, and follow their

> guidance.

>

> Good luck!

>

>

>

> From: amandazacher <amandazacher@...>

> Subject: Worried about what the doc said about my ear.

> cholesteatoma

> Date: Monday, February 9, 2009, 9:30 PM

>

> Everything started at the age of 3 months. My dad (an alcoholic) let

> a very large firework off only a few feet from my head. After that I

> had constant ear infections. I had one every 2-3 months throughout

> childhood. I went to several specialist and no one would diagnose me

> with anything. When I was 17 years old I was at the doc for something

> other than ear infection and he noticed something was different about

> my ear and recomended I see and ENT. I went and he said that my ear

> drum had caved in and wrapped around my hearing bones. Well 3

> surgeries later and 3 fake bones later I was all better. My hearing

> got better and I didn't have anymore infections. Now it has been 7

> years, and my hearing has gotten weird. I went to the doc yesterday

> and he looked in my ear. He looked very worried and said that I have

> a large growth behind my eardrum and he suspects that is a

> cholesteatoma. I have been experiencing migraines for the past 6

> months so this might explain why. I have an appointment for a CT scan

> and with the ENT this week. I am just nervous that my nightmare is

> not over and that it is much worse this time. I really don't want to

> have surgery again and I def want to keep my hearing. The thing that

> makes me the most mad is that I didn't know that I was supposed to

> have my ears checked regularly after my first surgeries. Very

> frustrated!! ! And now I am feeling pain in my ear. I think it is

> psychological because there was no pain until my doctor told me that

> I might have a c-toma. Does anyone know if there might be a different

> diagnosis, one that might not involve surgery? Just trying to be

> optimistic about this.

>

> Thanks for listening.

>

>

>

>

--

[Guest guest]

Thanks for the kind words. I know that I everything will come out

fine, I just kind of freaked out a little when I first heard on

Sunday, because it was completly surprising to me. I have a CT scan

tomorrow and will meet with the ENT on Thursday. I will let you know

how it goes.

--- In cholesteatoma , "

[Guest guest]

Surgeon who has performed More number of ear surgeries for c-toma is more important, it hardly matters if he is neuro-otologist, or not.

In my view one should be performing enough and it takes 10 years to be good ear surgeon at least

Dr. Arun,India

On 2/10/09,