Re: daughter who has had cholesteatoma surgery

[Guest guest]

I'm very sorry to hear that you had to go through so much before finding

out what was wrong. Both I and my daughter have had ctoma - mine was

removed when I was 10, my daughter's has been removed twice at ages 4

and 5. We're currently in the " wait and see " mode for my daughter.

I'm confused by something, though - why would your daughter no longer be

able to play the flute? I have a 20db loss in my affected ear, which is

essentially useless to me without a hearing aid, but my other ear works

fine and has never affected my musical ability (vocal, not

instrumental). I wouldn't think that hearing loss on one side would

stop her from doing something she clearly loves.

As for the retraction pocket on the other side - while it is something

to keep a VERY close eye on, it doesn't immediately mean that your

daughter will have a cholesteatoma there as well. I'm sure your doctor

has gone over this with both of you already, but it doesn't hurt to

re-emphasize some basics. Tell her to blow her nose and not snuffle,

and have her tell you the moment she has any congestion. Keeping nasal

congestion to a minimum will help keep the eustacean tubes open and help

balance the air pressure between her middle ear and the outside, which

will in turn keep the eardrum from retracting. I believe you'll find

that most people here (not all) have had ctoma on only one side - I

believe bilateral ctoma is rare.

Best of luck.

-Jeff.

___________________________________

daughter who has had cholesteatoma surgery

hello....

I just found this site tonight after looking up info on

cholesteatomas..My daughter who has had this since April of last

year just had a check up after another surgery 3 weeks ago..The

doctor thinks he got it all this time " Thank God " . She has no

hearing at all in her right ear.The diease was way bad when we

finally found out what was wrong with her.Like so many others that I

have read about we found out to late what was wrong.My daughther now

has to face that she can no longer play the Flute in her high school

band.That was very hard for her as well as us her parents.Im very

angry for her that she had to go through this awful thing.If only

our family doctor would have known more...or at least sent us to a

specialist ..But no I had to get nasty with a emergency room doctor

after the 3rd trip to the ER..He finally recommended a specialist in

this area...Today she a had check-up and I told our doctor of her

pain that she was having in her left ear.. He took a look and said

well I see some ear wax that needs to be removed..so he cleaned out

her ear and guess what-- he found what he called a retracted pocket

and he seems a little concerned..that we would need to keep an eye

on this..since this is the only hearing she has left..well needless

to say my daughter broke down in tears when she heard this...as well

as I did..because she has been so strong thru this whole ordeal ,it

was very hard to see her cry..Our doctor has been " our guardian

angel " too...we feel very lucky to have found him when we did..but

anyway to make a long story short... I just wanted to get on this

site and talk with some people who have gone through what my

daughter and our family has gone through..if anyone could talk with

me and share their experience with us we would greatly appreciate it.

Thank you so much, Summer and her Family

[Guest guest]

Hello,

I'm glad you found this group. When you have time, you should read back through some of the previous postings and you will find a wealth of information. I have had c-toma in both ears. It was first discovered in my right ear when I was 10 yrs. old. By then it had destroyed the hearing bones. It is unfortunate that family doctors and even ENT's don't recognize this sooner, but that is very common. My left ear was always my "better" ear until 5 yrs ago when c-toma was found. That was at age 38. The c-toma had destroyed the hearing bones in that ear as well. So without hearing aids, I cannot hear very much at all. But there are alot of options for hearing loss, including reconstruction. There are alot of different types of hearing aids as well. I currently wear a BAHA ( Bone Anchor Hearing Aid ) for both ears and I am able to hear very well. Best of luck to your daughter and your family.

Ilonasunni <summer_rainstorm@...> wrote:

hello....I just found this site tonight after looking up info on cholesteatomas..My daughter who has had this since April of last year just had a check up after another surgery 3 weeks ago..The doctor thinks he got it all this time "Thank God". She has no hearing at all in her right ear.The diease was way bad when we finally found out what was wrong with her.Like so many others that I have read about we found out to late what was wrong.My daughther now has to face that she can no longer play the Flute in her high school band.That was very hard for her as well as us her parents.Im very angry for her that she had to go through this awful thing.If only our family doctor would have known more...or at least sent us to a specialist ..But no I had to get nasty with a emergency room doctor after the 3rd trip to the ER..He

finally recommended a specialist in this area...Today she a had check-up and I told our doctor of her pain that she was having in her left ear.. He took a look and said well I see some ear wax that needs to be removed..so he cleaned out her ear and guess what-- he found what he called a retracted pocket and he seems a little concerned..that we would need to keep an eye on this..since this is the only hearing she has left..well needless to say my daughter broke down in tears when she heard this...as well as I did..because she has been so strong thru this whole ordeal ,it was very hard to see her cry..Our doctor has been "our guardian angel" too...we feel very lucky to have found him when we did..but anyway to make a long story short... I just wanted to get on this site and talk with some people who have gone through what my daughter and our family has gone through..if anyone could talk with me and share their experience with us

we would greatly appreciate it.Thank you so much, Summer and her Family

[Guest guest]

Hi Sunni,

I am sorry you and your family have to deal with this and I wish you the best of luck. I had ctoma on both sides - mastoidectomies and reconstruction and am doing fine now after 4 surgeries.

I am curious as to why the doctor took her eardrum out...did he replace it with something? I have not heard of that before.Just wondering what the plan is for that ear....are they just going to leave it?

Take care,

Melody sunni <summer_rainstorm@...> wrote:

hello all...I would like to begin with a "Thank YOU" to all who have responded to my post. It's very nice having someone to talk with on this subject... To the one who ask me about my daughter not being able to play her flute again..the doctor said that she now has some type of pressure behind her eardrum and he doesn't want her to be putting anymore pressure on her good ear..I'm just now getting some good info on this type of diease..She has nothing left in her right ear at all. It'd basically just a shell. He had to take her eardrum out on this last surgery she had 3 weeks ago. the cholesteatoma had already destroyed everything else..I'm sorry if it sounded like I was blaming my family doctor on this matter.I wasn't ..I am just upset that the family physican for anyone couldn't be able to get the training that an

ENT does..she as well as the family are being very up beat and very hopeful that the other ear doesn't end up like her right ear..its a scary thought to be so young and so full of life to have no hearing at all...my daughter is a very smart girl and has plans of going to college in the spring of next year..The flute was her choice of instrument and has been playing now for 6 years this year she got drum major...was hoping to go into concert band later this year but now she cant..thats what was so upsetting to her..she alot of plans..we were told that she was not a candidate for reconstruction surgery... we should know more about her left ear in 2 weeks when we go back for another check up.. Thanks again for responding ..I really do need someone to talk with ... sunni

[Guest guest]

" If only our family doctor would have known more...or at least sent

us to a specialist .. "

My thoughts exactly!! Most family doctors don't seem to know very

much about this disease at all, and just keep doings things like

washing the ear out with water or prescribing antibiotics all the

time. Family doctors have to be more educated on cholesteatoma or at

least stop being so stubborn and refer patients to a specialist when

they ask for it....

Kim

[Guest guest]

I am curious as to why the doctor took her eardrum out...did he replace it with something? I have not heard of that before.Just wondering what the plan is for that ear....are they just going to leave it?

It does happen. Sometimes the eardrum is long gone but the surgery that removes it, along with any remaining middle ear bones. is a an "open cavity" or "full radical mastoidectomy" (as a opposed to a "modified radical"). Open cavity was once the only kind of ear surgery but now it's much less common and reserved more severe kinds of ctoma. Basically it means that the middle ear, mastoid and ear canal form one continuous flask-like shape which needs regular cleaning. The advantage is that ear is usually fairly safe from recurring ctoma (not always I can assure you) but there are many disadvantages - it leaves you deaf, obviously and open ear can be prey to other kinds of infections. It's also a bit like having a window open open in your head - you feel it when the wind blows and so you end up go outdoors with earplugs and hats.

That used to that, but now it's no longer true that this kind of ear is unreconstructable though it can be tricky, involves a fair bit of rebuilding and is probably something that only the more adventurous doctors will attempt.

Phil

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