Re: Further growth after CWD surgery, anyone ??

[Guest guest]

Thanks Tom, that was my understanding of things, and the main

advantage of CWD surgery.

Reason for the question in the first place is that I'm trying to

fathom the reason why I am suddenly experiencing most of the

symptoms I suffered before surgery occurred.

By symptoms I mean localised head pain in the immediate vicinity of

my ear, regular infections and periodic discharges of pus, plus that

awful sensation of " fullness " and, not least, an increase in the

levels of tinnitus.

Clearly there is " something " going-on inside my head. The local ENT

team (under whose care I come) seem content to suck out the debris

and stuff the cavity full of antibiotic cream when each infection

comes along. I was told to expect a twice annual cleaning session -

it's closer to twice a month at the moment, and I'm trying to get to

the bottom of the problem, hence the question.

There's been a lot of CWD operations discussed on this Forum over

the past year. Is there no one around who can identify with the

kind of problems I've described??

Thanks for any replies. .

> Including myself I have not heard of c-toam coming

> back after a CWD. I responded to someone last week

> about this as they a CWD by the it sounded and had it

> come back. It is very hard for c-toma to reform after

> a CWD as there should not be anything for it to cling

> to....

>

> tom hansen

>

>

>

[Guest guest]

My understanding is that the c-toma can come back after a cwd but the

if it does it's just an office procedure to remove it rather than

under general anesthesia. My son has had alot of problems with

infections in the bowl after a cwd. After a year I convinced the

hospital that they were not giving him proper medical care and they

sent him back to his original ENT who cleared up the infection and my

son is doing much better. He has a follow up appointment just to be

sure it's completely gone. His doc put him on 875 mg of augmentin

twice a day. Then of course cleaned it out but at the last

visit " painted " the bowl with silver nitrate. Doc said my son had

a " severe, persisent and resistent infection that required more

aggressive treatment than what the ENT at the hospital was giving

him. "

Hope this helps.

> > Including myself I have not heard of c-toam coming

> > back after a CWD. I responded to someone last week

> > about this as they a CWD by the it sounded and had it

> > come back. It is very hard for c-toma to reform after

> > a CWD as there should not be anything for it to cling

> > to....

> >

> > tom hansen

> >

> >

> >

[Guest guest]

- thanks so much for that info. I'm due back to ENT in a few

days and I wanted, if at all possible, to go armed with just a few

facts and ideas.

Warm regards to all.

> > > Including myself I have not heard of c-toam coming

> > > back after a CWD. I responded to someone last week

> > > about this as they a CWD by the it sounded and had it

> > > come back. It is very hard for c-toma to reform after

> > > a CWD as there should not be anything for it to cling

> > > to....

> > >

> > > tom hansen

> > >

> > >

> > >

[Guest guest]

Hello

I had a CWD surgery in August 2003 this was my 1st c-toma operation

and YES unfortunately my cholesteatoma did return. My Dr found two

regrowths in my right ear and I have just had my 2nd surgery on 22nd

October 2004 to remove this. I also have c-toma in my left ear and

am waiting for my right ear to heal before they can operate on my

left.

Good Luck.

Zoe.

>

>

> Do any members have any first-hand experience, or knowledge of,

> cholesteatoma reforming after CWD surgery?

>

> If so, does anyone have any statistics?

>

> Thanks,

[Guest guest]

Thanks Zoe - that's what I was dreading to hear! Tell me, if you

wouldn't mind - what were your symptoms? Were the docs able to

establish the regrowth from these, or did you have another scan?

Thanks for any info.

>

> Hello

>

> I had a CWD surgery in August 2003 this was my 1st c-toma operation

> and YES unfortunately my cholesteatoma did return. My Dr found two

> regrowths in my right ear and I have just had my 2nd surgery on

22nd

> October 2004 to remove this. I also have c-toma in my left ear

and

> am waiting for my right ear to heal before they can operate on my

> left.

>

> Good Luck.

> Zoe.

>

>

> >

> >

> > Do any members have any first-hand experience, or knowledge of,

> > cholesteatoma reforming after CWD surgery?

> >

> > If so, does anyone have any statistics?

> >

> > Thanks,

[Guest guest]

I too have had regrowth I have had c-toma in both my left and right ear twice. It was pretty much the same symptoms as with the first diagnoses. I fear I may have it yet a thrid time, not real sure going to the DR. the 8th to find out. Don't wait until it's too late to find out.

Good luck and God Bless,

petergeralduk <donningtonart@...> wrote:

Thanks Zoe - that's what I was dreading to hear! Tell me, if you wouldn't mind - what were your symptoms? Were the docs able to establish the regrowth from these, or did you have another scan? Thanks for any info. > > Hello > > I had a CWD surgery in August 2003 this was my 1st c-toma operation > and YES unfortunately my cholesteatoma did return. My Dr found two > regrowths in my right ear and I have just had my 2nd surgery on 22nd > October 2004 to remove this. I also have c-toma in my left ear and > am waiting for my right ear to heal before they can operate on my > left. > > Good Luck.> Zoe.> > >

> > > > > Do any members have any first-hand experience, or knowledge of, > > cholesteatoma reforming after CWD surgery?> > > > If so, does anyone have any statistics?> > > > Thanks,

[Guest guest]

Hi

I had a CWD three years ago and the ctoma began to reappear just a few weeks later. It was fairly easy to re-etablish the recurrence - the first surgery was an "open cavity" so they stuck a mini-camera down into my ear and showed it to me. There were two basic problems - one was that the basic building block of ctoma is dead skin cells which under normal circumstances are supposed to migrate their way safely out of the ear. If the migration stops, as it had in my case, then the ctoma will keep on recurring. The second situation for me was that the ctoma was no longer simply a blob sitting somewhere in the ear but had burrowed itself deep into the temporal bone and so it never really went away. It was suggested to me that as long as there was skin and bone inside my ear then I'd have ctoma. The policy then was to keep on bashing it whenever it resurfaced. That doesn't get rid of the problem nor does it really leave you out of danger of the condition encroaching subterraneously, so to speak, on something vital (like your brain). I dared not get an infection. A year ago I had a second. more drastic CWD surgery to try to completely eliminate the disease but naturally it came back once again.

Like Zoe I also have a long-standing arangement to operate on the ctoma in my other ear if only they can manage to stabilize this one. I don't expect that's likely to happen. Sorry to say that for some of us ctoma is something we'll be dealing with for the rest of or lives.

Phil

Re: Further growth after CWD surgery, anyone ??

Thanks Zoe - that's what I was dreading to hear! Tell me, if you wouldn't mind - what were your symptoms? Were the docs able to establish the regrowth from these, or did you have another scan? Thanks for any info. > > Hello > > I had a CWD surgery in August 2003 this was my 1st c-toma operation > and YES unfortunately my cholesteatoma did return. My Dr found two > regrowths in my right ear and I have just had my 2nd surgery on 22nd > October 2004 to remove this. I also have c-toma in my left ear and > am waiting for my right ear to heal before they can operate on my > left. > > Good Luck.> Zoe.> > > > > > > > Do any members have any first-hand experience, or knowledge of, > > cholesteatoma reforming after CWD surgery?> > > > If so, does anyone have any statistics?> > > > Thanks,

[Guest guest]

My goodness, and what damage will the one do while waiting to be done, while they try to eliminate the first one? My little one is just beginning this ride and it is scarry!

ShirleyPhil <psmorris@...> wrote:

Hi

I had a CWD three years ago and the ctoma began to reappear just a few weeks later. It was fairly easy to re-etablish the recurrence - the first surgery was an "open cavity" so they stuck a mini-camera down into my ear and showed it to me. There were two basic problems - one was that the basic building block of ctoma is dead skin cells which under normal circumstances are supposed to migrate their way safely out of the ear. If the migration stops, as it had in my case, then the ctoma will keep on recurring. The second situation for me was that the ctoma was no longer simply a blob sitting somewhere in the ear but had burrowed itself deep into the temporal bone and so it never really went away. It was suggested to me that as long as there was skin and bone inside my ear then I'd have ctoma. The policy then was to keep on bashing it whenever it resurfaced. That doesn't get rid of the problem nor does it really leave you

out of danger of the condition encroaching subterraneously, so to speak, on something vital (like your brain). I dared not get an infection. A year ago I had a second. more drastic CWD surgery to try to completely eliminate the disease but naturally it came back once again.

Like Zoe I also have a long-standing arangement to operate on the ctoma in my other ear if only they can manage to stabilize this one. I don't expect that's likely to happen. Sorry to say that for some of us ctoma is something we'll be dealing with for the rest of or lives.

Phil

Re: Further growth after CWD surgery, anyone ??

Thanks Zoe - that's what I was dreading to hear! Tell me, if you wouldn't mind - what were your symptoms? Were the docs able to establish the regrowth from these, or did you have another scan? Thanks for any info. > > Hello > > I had a CWD surgery in August 2003 this was my 1st c-toma operation > and YES unfortunately my cholesteatoma did return. My Dr found two > regrowths in my right ear and I have just had my 2nd surgery on 22nd > October 2004 to remove this. I also have c-toma in my left ear and > am waiting for my right ear to heal before they can operate on my > left. > > Good Luck.> Zoe.> > > > > > > > Do any members have any first-hand experience, or

knowledge of, > > cholesteatoma reforming after CWD surgery?> > > > If so, does anyone have any statistics?> > > > Thanks,

[Guest guest]

My goodness, and what damage will the one do while waiting to be done, while they try to eliminate the first one? My little one is just beginning this ride and it is scarry!

Shirley

Hi Shirley

I hope I didn't cause you too much concern. Some of the adults who post here (and I dare say I'm one of them) have longterm and often intractable problems with ctoma. I guess they're the ones who are most inclined to stick around a board like this and become expert witnesses this disease and its associated problems. But it isn't necessarily going to be such an ongoing slog for everyone and I'd hope it doesn't have to be that way for your daughter. Ctoma is something you will have to mindful of, though without thinking it will inevitably recur and and get worse. The severity of ctoma is always a direct result of the time it's been there which is why adults often show up with some of the worst symptoms simply because they are more likely to have spent years or even decades, neglecting or failing to get adequate treatment. By which time some of the problems may have become unfixable. Ctoma, like any other disease, will have less (lifelong) repercussions if it is caught early enough. So I hope there is some brighter hope for the many children who are represented on this board.

Phil

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[Guest guest]

Hi Phil

I'd like to thank you also for this information which does, I have

to say, reinforce my growing suspicion that there is something nasty

going on inside this head of mine that requires more drastic

attention other than twice monthly " suck outs " and antibiotic cream.

I'll take up the points you have kindly made with my surgeon when I

see him (again!) in four days time, and report back accordingly.

My thanks to you all once again.

> Hi

>

> I had a CWD three years ago and the ctoma began to reappear just

a few weeks later. It was fairly easy to re-etablish the recurrence -

the first surgery was an " open cavity " so they stuck a mini-camera

down into my ear and showed it to me. There were two basic problems -

one was that the basic building block of ctoma is dead skin cells

which under normal circumstances are supposed to migrate their way

safely out of the ear. If the migration stops, as it had in my case,

then the ctoma will keep on recurring. The second situation for me

was that the ctoma was no longer simply a blob sitting somewhere in

the ear but had burrowed itself deep into the temporal bone and so

it never really went away. It was suggested to me that as long as

there was skin and bone inside my ear then I'd have ctoma. The

policy then was to keep on bashing it whenever it resurfaced. That

doesn't get rid of the problem nor does it really leave you out of

danger of the condition encroaching subterraneously, so to speak, on

something vital (like your brain). I dared not get an infection. A

year ago I had a second. more drastic CWD surgery to try to

completely eliminate the disease but naturally it came back once

again.

>

> Like Zoe I also have a long-standing arangement to operate on the

ctoma in my other ear if only they can manage to stabilize this

one. I don't expect that's likely to happen. Sorry to say that for

some of us ctoma is something we'll be dealing with for the rest of

or lives.

>

> Phil

> Re: Further growth after CWD surgery,

anyone ??

>

>

>

> Thanks Zoe - that's what I was dreading to hear! Tell me, if

you

> wouldn't mind - what were your symptoms? Were the docs able to

> establish the regrowth from these, or did you have another

scan?

> Thanks for any info.

>

>

> >

> > Hello

> >

> > I had a CWD surgery in August 2003 this was my 1st c-toma

operation

> > and YES unfortunately my cholesteatoma did return. My Dr found

two

> > regrowths in my right ear and I have just had my 2nd surgery

on

> 22nd

> > October 2004 to remove this. I also have c-toma in my left

ear

> and

> > am waiting for my right ear to heal before they can operate on

my

> > left.

> >

> > Good Luck.

> > Zoe.

> >

> >

> > >

> > >

> > > Do any members have any first-hand experience, or knowledge

of,

> > > cholesteatoma reforming after CWD surgery?

> > >

> > > If so, does anyone have any statistics?

> > >

> > > Thanks,

>

>

>

>

>

>

[Guest guest]

Hi ,

My symptons of c-toma recurrance in my right ear were similar to the

first time, the smelly ear drainage and the fullness felling but

this time it was alot milder so I wasn't totally sure that it was

c-toma again. As I was booked in for a CT scan to see how bad the

c-toma was in my left ear I also asked them if they would scan my

right ear to check whether the c-toma had returned but was told that

they do scan both sides anyway so they can compare the two. When I

went back to see my doctor he cofirmed that it had returned in my

right ear and that it had spread all around in my left ear. The

doctor gave me some ear drops for both ears and the right ear

drainage cleared up even though the c-toma had returned. When he

looked into my ear with the microscope he could see 2 lots of

regrowth (pearls).

I read once on one website (can't remember which one it was but it

was while I was doing some research into this c-toma thing when I

was first diagnoised) that it only takes one tiny microscopic

fragment to be left behind after surgery and it starts to regrow

(don't know how true this is but I suppose it's like any other

disease if you don't get completely rid then it just keeps on

returning)......

Not sure if i've been of any help but good luck.

Zoe.

> > >

> > >

> > > Do any members have any first-hand experience, or knowledge

of,

> > > cholesteatoma reforming after CWD surgery?

> > >

> > > If so, does anyone have any statistics?

> > >

> > > Thanks,