Re: Possible 3rd. surgery coming up! I'm a Wreck!

[Guest guest]

Sandi

It is discouraging to hear that you have a recurrence. However, because of your regular check ups, you caught it early. Hopefully all will go well in removing it once again. I think we all dread hearing what you were told, but even though it is a major disappointment, it probably isn't as bad as the first two surgeries, because you are taking care of it early. Keep your chin up, you will recover once again.

Lynn

-- Possible 3rd. surgery coming up! I'm a Wreck!

I had my usual 6 month "check up" today with my ear specialist, and

he found a cholesteatoma. In 1999 I had a mastoidectomy and a

cholesteatoma removed. In 2000 I had a radical mastoidectomy, a

cholesteatoma removed and a prosthetic put in, because of the damage

due to the cholesteatoma. I have lost at least 50% of my hearing. I

have my regular "cleanings" every 6 months..and now this! He tried

to take care of it in the office, but I got too dizzy. He told me I

have to return in 1 month to see if this dried up, if not, I will

need to have it removed. Does anyone know how bad this is compared

to my first 2 surgeries? I cried all the way home...I guess I just

thought I'd be fine from here on out. Does this go on for the rest

of my life now? My doctor said it's not bad compared to what I've

been through, but it's not him going under again. I worry that I'm

not going to grow old to see my kids grow up! Crazy I guess...I

hope! Looking for some encouraging news I guess!

Thank you,

Sandi

[Guest guest]

Rarely does office cleanings take care of c-toma, or

aleast from what I have seen and experanced. It could

be a way to manage it for a while but in the long run

surgery is the next option. Granted, Doc's vary from

one to the other. What gets me if surgery is the

likely outcome whay not just go to the surgery

option??? Phil, do you have a thought on this???

tom hansen

--- " M. or L. Witkowski " <lynnwit@...> wrote:

> Sandi

> It is discouraging to hear that you have a

> recurrence. However, because of

> your regular check ups, you caught it early.

> Hopefully all will go well in

> removing it once again. I think we all dread

> hearing what you were told,

> but even though it is a major disappointment, it

> probably isn't as bad as

> the first two surgeries, because you are taking care

> of it early. Keep your

> chin up, you will recover once again.

> Lynn

>

>

> -- Possible 3rd. surgery

> coming up! I'm a Wreck!

>

> I had my usual 6 month " check up " today with my ear

> specialist, and

> he found a cholesteatoma. In 1999 I had a

> mastoidectomy and a

> cholesteatoma removed. In 2000 I had a radical

> mastoidectomy, a

> cholesteatoma removed and a prosthetic put in,

> because of the damage

> due to the cholesteatoma. I have lost at least 50%

> of my hearing. I

> have my regular " cleanings " every 6 months..and now

> this! He tried

> to take care of it in the office, but I got too

> dizzy. He told me I

> have to return in 1 month to see if this dried up,

> if not, I will

> need to have it removed. Does anyone know how bad

> this is compared

> to my first 2 surgeries? I cried all the way

> home...I guess I just

> thought I'd be fine from here on out. Does this go

> on for the rest

> of my life now? My doctor said it's not bad

> compared to what I've

> been through, but it's not him going under again. I

> worry that I'm

> not going to grow old to see my kids grow up! Crazy

> I guess...I

> hope! Looking for some encouraging news I guess!

> Thank you,

> Sandi

>

>

>

>

>

[Guest guest]

Rarely does office cleanings take care of c-toma, oraleast from what I have seen and experanced. It couldbe a way to manage it for a while but in the long runsurgery is the next option. Granted, Doc's vary fromone to the other. What gets me if surgery is thelikely outcome whay not just go to the surgeryoption??? Phil, do you have a thought on this???Hi Tom

Not entirely sure what to say here because I am in a managed situation myself for the second time. But what I'm dealing with at the moment is such a peculiar form of ctoma that it probably doesn't apply to anyone else. Managing the ctoma the best route for me because the surguries haven't resolved the underlying condition that keeps on causing it. I'd just end up with never-ending futile operations. Managing is not ideal because you are always likely to have some or other of the ongoing discomfort that ctoma can cause. A second opinion doctor told me that they hammer away at this disease (it's kind of embedded in the bone in there), it could never be got rid of. Last time around the ctoma did gradually spread despite the monthly cleanings and scrapings and that meant they had to do a radical surgery which helped but didn't resolve it. I have a strange feeling the same may happen again a couple of years from now.

So you're right, managing a ctoma is not the best way unless you're too old or sick to undergo surgery or if you just happen to be me.

Phil

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[Guest guest]

i was wondering if anyone had problems with their eustachian tubes . I read that a possible cause of cholesteatomas was blocked or not functioning properly eustachian tubes ( because they help with the air flow from the nose to the ear and help keep it dry) . and has anyone had tubes put in to help?

thank you

jamiePhil <psmorris@...> wrote:

Rarely does office cleanings take care of c-toma, oraleast from what I have seen and experanced. It couldbe a way to manage it for a while but in the long runsurgery is the next option. Granted, Doc's vary fromone to the other. What gets me if surgery is thelikely outcome whay not just go to the surgeryoption??? Phil, do you have a thought on this???Hi Tom

Not entirely sure what to say here because I am in a managed situation myself for the second time. But what I'm dealing with at the moment is such a peculiar form of ctoma that it probably doesn't apply to anyone else. Managing the ctoma the best route for me because the surguries haven't resolved the underlying condition that keeps on causing it. I'd just end up with never-ending futile operations. Managing is not ideal because you are always likely to have some or other of the ongoing discomfort that ctoma can cause. A second opinion doctor told me that they hammer away at this disease (it's kind of embedded in the bone in there), it could never be got rid of. Last time around the ctoma did gradually spread despite the monthly cleanings and scrapings and that meant they had to do a radical surgery which helped but didn't resolve it. I have a strange feeling the same may happen again a couple of years from

now.

So you're right, managing a ctoma is not the best way unless you're too old or sick to undergo surgery or if you just happen to be me.

Phil

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[Guest guest]

In a message dated 5/13/2004 7:01:44 PM Pacific Standard Time, intoreflexology@... writes:

i was wondering if anyone had problems with their eustachian tubes . I read that a possible cause of cholesteatomas was blocked or not functioning properly eustachian tubes ( because they help with the air flow from the nose to the ear and help keep it dry) . and has anyone had tubes put in to help?

In lieu of going straight to the CWD surgery, my son is about to have a tonsillectomy, adenoidectomy, and ear tubes put in in the hope that this will normalize the air flow into his middle ear and the cholesteatoma will then not re-occur. In this same surgery, doc will look under the ear drum to see what the current state of the ctoma is. The hope is that we can do this surgery, then let everything heal, then go back and do a CWU in about 2 months, instead of the recommended CWD. Hopefully, because air flow is normal, the ctoma will not re-occur. This tonsillectomy, etc... will happen on May 28 so I can't tell you yet if it worked for us. But I will keep all posted. All I can do at this point is confirm that, yes, we are talking to a surgeon who believes that what you are saying is correct or at least a possible cause and he is proceeding on that basis.

Marie