Re: Any others choose microsuction instead surgery?

[Guest guest]

Is your cholesteatoma in the canal? On Thu, Jun 16, 2011 at 3:10 PM, anony8107 <anony8107@...> wrote:

I've been diagnosed with Cholesteatoma for about 7 years now, and the disease has been around for many more years now.

After discussing the situation with the surgeon, I decided for regular checkups and microsuction, instead of an operation. There is no real suffering and the hearing is reasonable on that ear. The ear gets easily blocked after each common cold, and I visit the surgeon for microsuction after the cold is over.

Reading this group, it looks like practically everyone chooses for surgery, either canal wall up or down, which makes me feel an exception.

Does anyone else chose to manage the Cholesteatoma with regular checkup/microsuction for a long period of time?

------------------------------------

[Guest guest]

Hi I had a CWD when I had a radical modified mastoidectomy (together with a meatoplasty, tympanoplasty and ossicular reconstruction) in order to remove my cholesteatoma from the attic of my right ear in November 1999; to date, that’s been the only ear surgery I’ve had. I visit my surgeon’s clinic every 6 months or so for a check-up and to have micro-suction to get rid of debris from infections and perforations that I still suffer from. In the summer of last year, it was thought I might have a recurrence of cholesteatoma, but this fortunately wasn’t the case – phew! But I still visit the clinic and have the microsuction to get rid of the debris, etc., so that my ear remains as healthy as possible. I’ve never understood from my surgeon that microsuction was a method of managing the cholesteatoma – I’ve always understood that it’s more a way of getting rid of the debris, and that surgery is the only way of getting rid of the cholesteatoma itself. Kazzy From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of sSent: 17 June 2011 00:40cholesteatoma Subject: Re: Any others choose microsuction instead surgery? Is your cholesteatoma in the canal? On Thu, Jun 16, 2011 at 3:10 PM, anony8107 <anony8107@...> wrote:I've been diagnosed with Cholesteatoma for about 7 years now, and the disease has been around for many more years now.After discussing the situation with the surgeon, I decided for regular checkups and microsuction, instead of an operation. There is no real suffering and the hearing is reasonable on that ear. The ear gets easily blocked after each common cold, and I visit the surgeon for microsuction after the cold is over.Reading this group, it looks like practically everyone chooses for surgery, either canal wall up or down, which makes me feel an exception.Does anyone else chose to manage the Cholesteatoma with regular checkup/microsuction for a long period of time?------------------------------------

[Guest guest]

It is only effective for micro cholesteatomasOn Fri, Jun 17, 2011 at 11:57 AM, Kazzy <kazzy@...> wrote:

 

Hi 

I had a CWD when I had a radical modified mastoidectomy (together with a meatoplasty, tympanoplasty and ossicular reconstruction) in order to remove my cholesteatoma from the attic of my right ear in November 1999; to date, that’s been the only ear surgery I’ve had.  I visit my surgeon’s clinic every 6 months or so for a check-up and to have micro-suction to get rid of debris from infections and perforations that I still suffer from.

 In the summer of last year, it was thought I might have a recurrence of cholesteatoma, but this fortunately wasn’t the case – phew!  But I still visit the clinic and have the microsuction to get rid of the debris, etc., so that my ear remains as healthy as possible.

 I’ve never understood from my surgeon that microsuction was a method of managing the cholesteatoma – I’ve always understood that it’s more a way of getting rid of the debris, and that surgery is the only way of getting rid of the cholesteatoma itself.

 Kazzy 

  

From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of s

Sent: 17 June 2011 00:40cholesteatoma Subject: Re: Any others choose microsuction instead surgery?

   Is your cholesteatoma in the canal? On Thu, Jun 16, 2011 at 3:10 PM, anony8107 <anony8107@...> wrote:

I've been diagnosed with Cholesteatoma for about 7 years now, and the disease has been around for many more years now.After discussing the situation with the surgeon, I decided for regular checkups and microsuction, instead of an operation. There is no real suffering and the hearing is reasonable on that ear. The ear gets easily blocked after each common cold, and I visit the surgeon for microsuction after the cold is over.

Reading this group, it looks like practically everyone chooses for surgery, either canal wall up or down, which makes me feel an exception.Does anyone else chose to manage the Cholesteatoma with regular checkup/microsuction for a long period of time?

------------------------------------

[Guest guest]

NO image could be seenOn Fri, Jun 17, 2011 at 11:57 AM, Kazzy <kazzy@...> wrote:

 

Hi 

I had a CWD when I had a radical modified mastoidectomy (together with a meatoplasty, tympanoplasty and ossicular reconstruction) in order to remove my cholesteatoma from the attic of my right ear in November 1999; to date, that’s been the only ear surgery I’ve had.  I visit my surgeon’s clinic every 6 months or so for a check-up and to have micro-suction to get rid of debris from infections and perforations that I still suffer from.

 In the summer of last year, it was thought I might have a recurrence of cholesteatoma, but this fortunately wasn’t the case – phew!  But I still visit the clinic and have the microsuction to get rid of the debris, etc., so that my ear remains as healthy as possible.

 I’ve never understood from my surgeon that microsuction was a method of managing the cholesteatoma – I’ve always understood that it’s more a way of getting rid of the debris, and that surgery is the only way of getting rid of the cholesteatoma itself.

 Kazzy 

  

From: cholesteatoma [mailto:cholesteatoma ] On Behalf Of s

Sent: 17 June 2011 00:40cholesteatoma Subject: Re: Any others choose microsuction instead surgery?

   Is your cholesteatoma in the canal? On Thu, Jun 16, 2011 at 3:10 PM, anony8107 <anony8107@...> wrote:

I've been diagnosed with Cholesteatoma for about 7 years now, and the disease has been around for many more years now.After discussing the situation with the surgeon, I decided for regular checkups and microsuction, instead of an operation. There is no real suffering and the hearing is reasonable on that ear. The ear gets easily blocked after each common cold, and I visit the surgeon for microsuction after the cold is over.

Reading this group, it looks like practically everyone chooses for surgery, either canal wall up or down, which makes me feel an exception.Does anyone else chose to manage the Cholesteatoma with regular checkup/microsuction for a long period of time?

------------------------------------

[Guest guest]

Kazzy that's my understanding from my surgeon too. I'm definitely asking more

questions the next time I see my surgeon. Jenni

Kazzy <kazzy@...> wrote:

>Hi

>

>

>

>I had a CWD when I had a radical modified mastoidectomy (together with a

>meatoplasty, tympanoplasty and ossicular reconstruction) in order to remove

>my cholesteatoma from the attic of my right ear in November 1999; to date,

>that's been the only ear surgery I've had. I visit my surgeon's clinic

>every 6 months or so for a check-up and to have micro-suction to get rid of

>debris from infections and perforations that I still suffer from.

>

>

>

>In the summer of last year, it was thought I might have a recurrence of

>cholesteatoma, but this fortunately wasn't the case - phew! But I still

>visit the clinic and have the microsuction to get rid of the debris, etc.,

>so that my ear remains as healthy as possible.

>

>

>

>I've never understood from my surgeon that microsuction was a method of

>managing the cholesteatoma - I've always understood that it's more a way of

>getting rid of the debris, and that surgery is the only way of getting rid

>of the cholesteatoma itself.

>

>

>

>Kazzy

>

>

>

>

>

>

>

>From: cholesteatoma [mailto:cholesteatoma ]

>On Behalf Of s

>Sent: 17 June 2011 00:40

>cholesteatoma

>Subject: Re: Any others choose microsuction instead surgery?

>

>

>

>

>

>Is your cholesteatoma in the canal?

>

>On Thu, Jun 16, 2011 at 3:10 PM, anony8107 <anony8107@...> wrote:

>

>I've been diagnosed with Cholesteatoma for about 7 years now, and the

>disease has been around for many more years now.

>

>After discussing the situation with the surgeon, I decided for regular

>checkups and microsuction, instead of an operation. There is no real

>suffering and the hearing is reasonable on that ear. The ear gets easily

>blocked after each common cold, and I visit the surgeon for microsuction

>after the cold is over.

>

>Reading this group, it looks like practically everyone chooses for surgery,

>either canal wall up or down, which makes me feel an exception.

>

>Does anyone else chose to manage the Cholesteatoma with regular

>checkup/microsuction for a long period of time?

>

>

>

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

>

>

[Guest guest]

Sorry for the misunderstanding:

The cholesteamtoma is still in my ear, and has been for over 10 years.

I just chose to not have any operation. Instead I visit the surgeon every 6

month, and clean the affected ear as good as possible, using microsuction. Of

course the cholesteamtoma can grow and do damage eventually.

Am I the only one 'managing' a choleasteatoma this way?

> >

> >I've been diagnosed with Cholesteatoma for about 7 years now, and the

> >disease has been around for many more years now.

> >

> >After discussing the situation with the surgeon, I decided for regular

> >checkups and microsuction, instead of an operation. There is no real

> >suffering and the hearing is reasonable on that ear. The ear gets easily

> >blocked after each common cold, and I visit the surgeon for microsuction

> >after the cold is over.

> >

> >Reading this group, it looks like practically everyone chooses for surgery,

> >either canal wall up or down, which makes me feel an exception.

> >

> >Does anyone else chose to manage the Cholesteatoma with regular

> >checkup/microsuction for a long period of time?

> >

> >

> >

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

> >

> >

[Guest guest]

My cholesteatoma is not micro, it is extensive. I was advised for a canal wall

down. There is some drawbacks of having the operation: I will likely loose

some/all hearing on that side, and a risk that the facial nerve is hit.

Ultimately the decision to operate or not is left with the patient, and i choose

to wait and see how it develops.

The cholesteatoma has been in my ear for 10 years, but it has not been a large

suffering. Again, I visit the surgeon every 6 month, have the ear cleaned out,

and discuss about the situation.

No-one else made such decision?

***

> > *

> >

> > I've been diagnosed with Cholesteatoma for about 7 years now, and the

> > disease has been around for many more years now.

> >

> > After discussing the situation with the surgeon, I decided for regular

> > checkups and microsuction, instead of an operation. There is no real

> > suffering and the hearing is reasonable on that ear. The ear gets easily

> > blocked after each common cold, and I visit the surgeon for microsuction

> > after the cold is over.

> >

> > Reading this group, it looks like practically everyone chooses for surgery,

> > either canal wall up or down, which makes me feel an exception.

> >

> > Does anyone else chose to manage the Cholesteatoma with regular

> > checkup/microsuction for a long period of time?

> >

> >

> >

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

> >

> >

[Guest guest]

Yes, it is in the ear.

>

> > I've been diagnosed with Cholesteatoma for about 7 years now, and the

> > disease has been around for many more years now.

> >

> > After discussing the situation with the surgeon, I decided for regular

> > checkups and microsuction, instead of an operation. There is no real

> > suffering and the hearing is reasonable on that ear. The ear gets easily

> > blocked after each common cold, and I visit the surgeon for microsuction

> > after the cold is over.

> >

> > Reading this group, it looks like practically everyone chooses for surgery,

> > either canal wall up or down, which makes me feel an exception.

> >

> > Does anyone else chose to manage the Cholesteatoma with regular

> > checkup/microsuction for a long period of time?

> >

> >

> >

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

> >

> >

[Guest guest]

I think you took most of us by surprised because this was not presented to you

as option. Given the amount of damage they can do in short amount of time

surgery was required. I can't speak for anyone else but I was miserable when

mine was found. A couple people on this board have the ctoma erode bone leading

into the brain. A lot of time CT and MRI images don't give a clear picture

extent of ctoma, so the damage is more extensive than originally understood.

My doctor explained what it was, that it would continue to grow and it needed to

come out. Mine was acquired; it grew extremely large in small amount of time,

eating away at all my hearing bones.

If you are comfortable your decision and understand the risk associated with

watching and waiting then maybe it the option for you. Personally I think you

might be better served getting a second opinion.

Kathy

> > >

> > >I've been diagnosed with Cholesteatoma for about 7 years now, and the

> > >disease has been around for many more years now.

> > >

> > >After discussing the situation with the surgeon, I decided for regular

> > >checkups and microsuction, instead of an operation. There is no real

> > >suffering and the hearing is reasonable on that ear. The ear gets easily

> > >blocked after each common cold, and I visit the surgeon for microsuction

> > >after the cold is over.

> > >

> > >Reading this group, it looks like practically everyone chooses for surgery,

> > >either canal wall up or down, which makes me feel an exception.

> > >

> > >Does anyone else chose to manage the Cholesteatoma with regular

> > >checkup/microsuction for a long period of time?

> > >

> > >

> > >

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

> > >

> > >

[Guest guest]

Today I visited my ENT surgeon again for the 6-monthly micro suction (and

antibiotics). I brought up this forum discussion and he told me that as long as

the pressure in the ear doesn't build up, and I visit him every 6 month, there

is no immediate danger. If my surgeon would tell me that my choice is reckless,

I would choose for an operation.

> I think you took most of us by surprised because this was not

> presented to you as option.

All options were presented to me.

>>Personally I think you might be better served getting a second >>opinion.

I have heard the option from three different surgeons now, the first one in the

UK. He brought up the benefits and drawbacks of an operation. Now I've had two

different ENT surgeons in the USA, and they respected my decision to postpone an

operation and choose microsuction instead. Although he recommends a canal wall

down operation for me, he respects my decision to postpone it and he told me it

is very unlikely that things get worse very soon, as long as the pressure

doesn't build up and I visit him evey 6 month.

He also mentioned that there are some other people who choose to leave the

cholesteatoma in the ear and frequently visit the surgeon for microsuction.

According to all three of them, some people have been doing this for several

decenia apparently.

I can understand that if a cholesteatoma has been doing a lot of damage to you,

it seems a very strange decision to leave it there (aside from microsuction).

I'll try to keep you up-to-date on my condition, and hope to find someone else

who chose the same path.

Thanks,

Erwin

> > > >

> > > >I've been diagnosed with Cholesteatoma for about 7 years now, and the

> > > >disease has been around for many more years now.

> > > >

> > > >After discussing the situation with the surgeon, I decided for regular

> > > >checkups and microsuction, instead of an operation. There is no real

> > > >suffering and the hearing is reasonable on that ear. The ear gets easily

> > > >blocked after each common cold, and I visit the surgeon for microsuction

> > > >after the cold is over.

> > > >

> > > >Reading this group, it looks like practically everyone chooses for

surgery,

> > > >either canal wall up or down, which makes me feel an exception.

> > > >

> > > >Does anyone else chose to manage the Cholesteatoma with regular

> > > >checkup/microsuction for a long period of time?

> > > >

> > > >

> > > >

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

> > > >

> > > >

[Guest guest]

Sorry for not replying, I don't frequently check this newsgroup.

I'm still doing very fine, the cholesteatoma is not bottering me much, it is not

draining etc, so I keep on postponing a canal wall down (CWD) operation until my

surgeon tells me it became urgent.

If/when my condition changes, I'll post on this newsgroup.

Thanks,

Erwin

> > > > >

> > > > >I've been diagnosed with Cholesteatoma for about 7 years now, and the

> > > > >disease has been around for many more years now.

> > > > >

> > > > >After discussing the situation with the surgeon, I decided for regular

> > > > >checkups and microsuction, instead of an operation. There is no real

> > > > >suffering and the hearing is reasonable on that ear. The ear gets

easily

> > > > >blocked after each common cold, and I visit the surgeon for

microsuction

> > > > >after the cold is over.

> > > > >

> > > > >Reading this group, it looks like practically everyone chooses for

surgery,

> > > > >either canal wall up or down, which makes me feel an exception.

> > > > >

> > > > >Does anyone else chose to manage the Cholesteatoma with regular

> > > > >checkup/microsuction for a long period of time?

> > > > >

> > > > >

> > > > >

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

> > > > >

> > > > >