Re: TO EVERYONE: with c-toma recurrence

[Guest guest]

Hi,

While I had it only once in one ear, my daughter has had it recur in the

same ear (same ear, two occurrences). Her recurrence was within a year

(first found April 2003, removed July 2003; returned February 2004,

removed May 2004). We are currently waiting to see if we can go ahead

with reconstruction in January 2005, or if the surgeon will find another

recurrence.

Our surgeon has stated that, if he finds a recurrence, he is likely to

perform a mastoidectomy to prevent future instances. Has your surgeon

talked to you about this? My impression was that people had two or

three occurrences, and then had radical surgery to completely prevent it

coming back.

Others here have much more extensive experience than I do.

-Jeff.

___________________________________

TO EVERYONE: with c-toma recurrence

I was just wondering if anyone has had c-toma reccurence as much as I

have. Basically I am into my fourth one in 6 years. If I have been

reading correctly, it seems that people here have had it maybe once

in each ear at most.

Look forward to responses!

Thanks!

[Guest guest]

My daughter had the original ctoma removed and then 1 recurrence in

the same ear (so 2 surgeries for removal). We were told if there

was another recurrence that it was likely that a more radical

approach would be taken.

Candy

> I was just wondering if anyone has had c-toma reccurence as much

as I

> have. Basically I am into my fourth one in 6 years. If I have been

> reading correctly, it seems that people here have had it maybe

once

> in each ear at most.

> Look forward to responses!

> Thanks!

[Guest guest]

I wonder if the ctoma is recurring so often or if it isn't just somehow permanently established. The reason I say that is that I have bilateral ctoma which I've never successfully got rid of despite having full radical mastoidectomy (open cavity) and one more radical still which tried to remove as much of the skin and bone in the ear as reasonably possible and then regraft it. The doctor has got it down to managable and infection free level but it still needs working on once a month. I could opt to leave the ctoma to assumulate longer and undergo periodic surgeries instead (with a greater risk of more facial nerve damage and possible extension into the brain) but the doctor reckons that I'd still find myself in the same ongoing managed situation afterwards - and so far that's exactly what has happened. The diagnosis is that none of the skin in my ear migrates (possibly due to cellular changes) and instead it burrows into the bone where it remains more or less immovable. I was once told that so long as I had skin and bone inside my ear I would have ctoma and nothing would ever get rid of it.

I was at the hospital just yesterday and the surgeon spent a good hour scouring out my ears. He said that what he was doing was removing skin debris and nothing else. I asked him what the difference was between the skin debris and the ctoma and he said "Good wuestion - that's a moot point!"

Phil

I was just wondering if anyone has had c-toma reccurence as much as I have. Basically I am into my fourth one in 6 years. If I have been reading correctly, it seems that people here have had it maybe once in each ear at most.Look forward to responses!Thanks!

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[Guest guest]

Hi,

Sorry to hear about all of your recurrences. I know how

disheartening it can be to hear that it's back. My 15 year old son

has had 2 recurrences in the last year - the last one was quite

extensive and was near the dura. The Dr. had to pull a muscle over

the dura to protect the brain in case of a recurrence. The frequent

cleanings that Phil mentioned sound like a good idea when you

consider what can happen if your let it go too long. My son asked

me if he'll ever be able to swim under water again- anybody have a

good answer?

--- In cholesteatoma , " redhotsistah " <Redhot@c

[Guest guest]

I had my last removal surgery at 15 (I'm now 24) and wondered the same thing. At 18 I had an ear plug molded to my ear which now allows me to go under if I want. I also use some type of ear drop before inserting the ear plug that is oil based to form a "seal". Ask your ENT or Oto about it. I was afraid to go under at first but I'm OK with it now.stacyd464 <stacy464@...> wrote:

Hi,Sorry to hear about all of your recurrences. I know how disheartening it can be to hear that it's back. My 15 year old son has had 2 recurrences in the last year - the last one was quite extensive and was near the dura. The Dr. had to pull a muscle over the dura to protect the brain in case of a recurrence. The frequent cleanings that Phil mentioned sound like a good idea when you consider what can happen if your let it go too long. My son asked me if he'll ever be able to swim under water again- anybody have a good answer?--- In cholesteatoma , "redhotsistah" <Redhot@c