Re: Recurring Cholesteotoma

[Guest guest]

Hi Kim,

Welcome to the group. I am in the same situation as you looking for

information about reconstruction. I will be having ossiculoplasty done next

spring... hopefully, if all goes well between now and then. If you find

anything about it let me know.

Here is one link I found. http://www.emedicine.com/ent/topic219.htm

and you might find some interesting articles here. It will also lead you to

the link above.

http://www.emedicine.com/ent/MIDDLE_EAR.htm

Lynn

Recurring cholesteotoma

> I just had my third surgery to remove a recurring cholesteotoma in my

> left ear (1992, 1996, 2002). This time, I also had a collagen

> implant in the middle ear because there was almost complete

> destruction of one middle ear bone (incus).

>

> In my followup visit, my ENT told me that the ear was rejecting the

> implant, and the rejection was probably triggered by a middle ear

> infection.

>

> I'm 38, and am very concerned about restoring the hearing in my left

> ear. I'm very interested in hearing from anyone that has had

> successful restoration of hearing after bone destruction, and your

> experience. Were multiple surgeries or different types of materials

> tried?

>

> Thanks,

> Kim

>

>

>

>

[Guest guest]

Thank you for the links. I really appreciate the info. (I'm kjgraves

registered under a different address).

When I had the first surgery in '92, I had to search thru the public

library for very small references, in 1996 I had my first baby and

had a lot more on my mind, and THIS time I have been able to see how

the internet has truly changed the quest for information forever! HA

This surgery was particularly difficult for me (after) because I had

a lot of drilling (mastoid), therefore more PAIN, and now the

prospect of losing my hearing is pretty daunting.

Thanks a lot for the info.

Kim

> Hi Kim,

> Welcome to the group. I am in the same situation as you looking for

> information about reconstruction. I will be having ossiculoplasty

done next

> spring... hopefully, if all goes well between now and then. If you

find

> anything about it let me know.

>

> Here is one link I found. http://www.emedicine.com/ent/topic219.htm

> and you might find some interesting articles here. It will also

lead you to

> the link above.

> http://www.emedicine.com/ent/MIDDLE_EAR.htm

>

> Lynn

>

> Recurring cholesteotoma

>

>

> > I just had my third surgery to remove a recurring cholesteotoma

in my

> > left ear (1992, 1996, 2002). This time, I also had a collagen

> > implant in the middle ear because there was almost complete

> > destruction of one middle ear bone (incus).

> >

> > In my followup visit, my ENT told me that the ear was rejecting

the

> > implant, and the rejection was probably triggered by a middle ear

> > infection.

> >

> > I'm 38, and am very concerned about restoring the hearing in my

left

> > ear. I'm very interested in hearing from anyone that has had

> > successful restoration of hearing after bone destruction, and your

> > experience. Were multiple surgeries or different types of

materials

> > tried?

> >

> > Thanks,

> > Kim

> >

> >

> >

> >

[Guest guest]

Re: Recurring cholesteotoma

> This surgery was particularly difficult for me (after) because I had

> a lot of drilling (mastoid), therefore more PAIN, and now the

> prospect of losing my hearing is pretty daunting.

ME TOO! My doc was in there with hip boots and a jackhammer. I can almost

picture him leaning down, cupping his hand to his mouth...

" HELLOOOO... " (Hellooo... hello...)

At least no one can accuse me of having rocks in my head. Nuthin' in there

but AIR.

--

Cheers,

--Jeff

[Guest guest]

Jeff -- have you ever considered a career in stand-up??? You never fail to make me smile, and that's not easy to do in this context. So many tough questions ... so many difficult cases ... but you are truly a rip! Thanks! Wish I had more to contribute on the information end of things, but I'm still in the learning phase ... just soaking up all the info I can get so I will be prepared when we go to surgery (when my daughter goes to surgery in September).

Love,

Dianne

Jeff Tindall <@...> wrote: Re: Recurring cholesteotoma> This surgery was particularly difficult for me (after) because I had> a lot of drilling (mastoid), therefore more PAIN, and now the> prospect of losing my hearing is pretty daunting.ME TOO! My doc was in there with hip boots and a jackhammer. I can almostpicture him leaning down, cupping his hand to his mouth..."HELLOOOO..." (Hellooo... hello...)At least no one can accuse me of having rocks in my head. Nuthin' in therebut AIR.--Cheers,--Jeff

[Guest guest]

Missy: I have had 4 operations (1989,1991,2000,2001) I was told after

teh last one that there was regrowth and I should have another

operation. The facial nerve is exposed and I have not had any really

bad symptoms; so I decided agains another operation.

However, recently I have been having problems with dull pain in the

area of the operation (right ear) and some nausia and vertigo. It has

been a year and a half since I had the ear suctioned out. The ENT wants

$300.00 for 4 minutes of work. I have found that I forget about past

pain in this ear and when relatively free I don't think about it. Then

when I have pain I wonder if I have been lying to myself and I am

always IN PAIN.

The three bones in the middle ear are gone as well as some of the

mastoid. I use a behind the ear hearing aid, but it always seems to

squeel when I change my facial expressions.

When the ENT suctions the ear out he can see everything in there and

look for regrowth of the ctoma. So far he has not found any. But he

says there is " debre " that needs to be sucked out.

One thing that really hurts is if I turn my head to the right quickly

in a certain manner; a sharp, intense spike like pain.

One thing I would recommend is Alveeno clear lotion for the itching.

-

-- In cholesteatoma , " catweaken " <catweaken@...> wrote:

>

> After three surgeries, I've been told I am cholesteotoma-free and

> have " normal hearing " (thanks to my titanium prosthesis). Just how

> likely is it that it's really gone? In 10+ years, am I going to find

> out it's back? What's been your experience/your thoughts?

>

> Missy

>

[Guest guest]

I never had any ear infection. The only uncomfortable thing now is the frequent load wooshing noise in the ctoma ear, started about 2 mths ago. My last week's check-up my doctor has ordered CT scan again, as she is suspecting the recurrent of the ctoma. It was only 1 year after my 1st operation (modified CWD), recurrent again! so fast! I am rather upset now, fear of another surgery. Still waiting for the CT scan & doctor's verdict on what to do next. I was hoping I could be like our member Mr Tom Hensen, ctoma free for so long...But.... After some thinking, I think I would delay the surgery now. If I operate again, no guarantee that next year it would not grow again and again. Many people has it for years before they found it. So its rather safe to leave it for a while, I will operate only when it grows to big size. I will do annual CT scan to check on it. Any thoughts on my thinking? Is annual CT scan a safe thing to do? Would appreciate your sharing. Thanks. Irene

Real people. Real questions. Real answers. Share what you know.

[Guest guest]

Hey saw my name being used....in a good way. It will

be 27 years in Decvember since my Modifed CWD and not

return. Surely I'm not the only one in the boat,

those who have had the modifed CWD have a 85% chance

of it never coming back. Those are good odds let

alone all the surgerys I did not have in the hope to

get ride of it...

tom hansen

PS ....never had a CT scan either....

--- Irene Kumo <wafikumo@...> wrote:

> I never had any ear infection. The only

> uncomfortable thing now is the frequent load

> wooshing noise in the ctoma ear, started about 2

> mths ago. My last week's check-up my doctor has

> ordered CT scan again, as she is suspecting the

> recurrent of the ctoma. It was only 1 year after my

> 1st operation (modified CWD), recurrent again! so

> fast! I am rather upset now, fear of another

> surgery. Still waiting for the CT scan & doctor's

> verdict on what to do next. I was hoping I could be

> like our member Mr Tom Hensen, ctoma free for so

> long...But....

>

> After some thinking, I think I would delay the

> surgery now. If I operate again, no guarantee that

> next year it would not grow again and again. Many

> people has it for years before they found it. So its

> rather safe to leave it for a while, I will operate

> only when it grows to big size. I will do annual CT

> scan to check on it.

>

> Any thoughts on my thinking? Is annual CT scan a

> safe thing to do? Would appreciate your sharing.

> Thanks.

> Irene

>

>

>

>

>

> ---------------------------------

>

> Real people. Real questions. Real answers. Share

> what you know.

__________________________________________________

[Guest guest]

Hi MIssy, I'm in the same boat you are right now. Just had my 3rd

surgery this week and my new otologist (whom I think rocks as of right

now) says that I will have a " normal ear " . Notice how we use

quotations around the word " normal. " Gosh, do you think we're doubtful?

Anyway, he says I won't even need to use my ear molds when showering

or swimming. Being the skeptic that I am, I'm not sure if I'll

actually give them up. I had an orthodontist tell me I didn't need my

retainer anymore as a teen and my teeth are crooked again!

I guess all we can do is wait and see if it returns. I hope for

both of our sakes, we never have to deal with it again.

(well, for me, in that ear anyway-i have to have a " second look " on

the other ear...)

Good luck! -Christa

>

> After three surgeries, I've been told I am cholesteotoma-free and

> have " normal hearing " (thanks to my titanium prosthesis). Just how

> likely is it that it's really gone? In 10+ years, am I going to

find

> out it's back? What's been your experience/your thoughts?

>

> Missy

>