Re: Question for anyone that has had C-Toma removed and not had a reocurrance

[Guest guest]

I had a Modified Radical in 1979 for my 3rd operation,

have not had c-toma since. I swim without a ear plug,

had reconstruction sucessfully.

Tom Hansen

--- amber krasny <am81576@...> wrote:

> Hi,

>

> I have had 16 total surgeries in my life and I

> believe the reason is because my original doc's were

> not removing it properly. I was just wondering if

> over a span of 11 years it is possible for the thing

> to keep growing back or if it is obvious as I

> thought.. they did not know what they were doing. I

> was seeing ENT's that basically were using me as

> there ginny pigs. They gutted me out and left me

> with nothing. I know see a wonderful neuro/otologist

> and he is in the process of rebuilding my whole

> middle ear space and putting in prosthesis to

> hopefully give me back some hearing ( I have 50% in

> both ears right now). He has down 3 procedures on

> each ear and hopefully we are almost done... these 6

> have been over the past 18 months and it is hard but

> after the neglect my other doctors did before I

> became educated on what was wrong with me I wanted

> to make sure this is done right.

>

> I would love to hear about anyone who has had this

> thing removed and not had a regrowth or in how long

> did they get a regrowth?

>

> Amber

>

>

>

>

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

> Be a better friend, newshound, and know-it-all with

> Mobile. Try it now.

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[Guest guest]

Got my surgery in 1965 (or was it 64...I was very young).

Anyway. thats 42 some odd years ago and still no reappearence.

No reconstruction, but, I do have a hunk of plastic inside my middle ear area

WAC

On Sat, Mar 22, 2008 at 9:41 PM, Tom Hansen <pingmn123@...> wrote:

I had a Modified Radical in 1979 for my 3rd operation,have not had c-toma since. I swim without a ear plug,had reconstruction sucessfully. Tom Hansen--- amber krasny <am81576@...> wrote:

> Hi,> > I have had 16 total surgeries in my life and I> believe the reason is because my original doc's were> not removing it properly. I was just wondering if> over a span of 11 years it is possible for the thing

> to keep growing back or if it is obvious as I> thought.. they did not know what they were doing. I> was seeing ENT's that basically were using me as> there ginny pigs. They gutted me out and left me

> with nothing. I know see a wonderful neuro/otologist> and he is in the process of rebuilding my whole> middle ear space and putting in prosthesis to> hopefully give me back some hearing ( I have 50% in

> both ears right now). He has down 3 procedures on> each ear and hopefully we are almost done... these 6> have been over the past 18 months and it is hard but> after the neglect my other doctors did before I

> became educated on what was wrong with me I wanted> to make sure this is done right.> > I would love to hear about anyone who has had this> thing removed and not had a regrowth or in how long

> did they get a regrowth?> > Amber > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with> Mobile. Try it now.

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If you light a man ON fire, you warm him for the rest of his life.

[Guest guest]

Did you get any hearing back? Walter Clayton <waccooga@...> wrote: Got my surgery in 1965 (or was it 64...I was very young). Anyway. thats 42 some odd years ago and still no reappearence. No reconstruction, but, I do have a hunk of plastic inside my middle ear area WAC On Sat, Mar 22, 2008 at 9:41 PM, Tom Hansen <pingmn123 > wrote: I had a Modified Radical in 1979 for my 3rd operation,have not had c-toma since. I swim without a ear plug,had reconstruction sucessfully. Tom Hansen--- amber krasny <am81576 > wrote:> Hi,> > I have had 16 total surgeries in my life and I> believe the reason is because my original doc's were> not removing it properly. I was just wondering if> over a span of 11 years it is possible for the thing> to keep growing back or if it is obvious as I> thought.. they did not know what they were doing. I> was seeing ENT's that basically were using me as> there ginny pigs. They gutted me out and left

me> with nothing. I know see a wonderful neuro/otologist> and he is in the process of rebuilding my whole> middle ear space and putting in prosthesis to> hopefully give me back some hearing ( I have 50% in> both ears right now). He has down 3 procedures on> each ear and hopefully we are almost done... these 6> have been over the past 18 months and it is hard but> after the neglect my other doctors did before I> became educated on what was wrong with me I wanted> to make sure this is done right.> > I would love to hear about anyone who has had this> thing removed and not had a regrowth or in how long> did they get a regrowth?> > Amber > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with> Mobile. Try it

now.__________________________________________________________Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping-- Remember: If you light a man a fire, you warm him for the night.If you light a man ON fire, you warm him for the rest of his life.

Be a better friend, newshound, and know-it-all with Mobile. Try it now.

[Guest guest]

So in your opinions of research over these years would you say mine has been here for 11 years now because it was never completely removed? I thought I read it is slow growing so for there to be problems right after a surgery... it makes me think it was never completely removed. Just looking for some opinions... Tom Hansen <pingmn123@...> wrote: I had a Modified Radical in 1979 for my 3rd operation,have not had c-toma since. I swim without a ear plug,had reconstruction

sucessfully. Tom Hansen--- amber krasny <am81576 > wrote:> Hi,> > I have had 16 total surgeries in my life and I> believe the reason is because my original doc's were> not removing it properly. I was just wondering if> over a span of 11 years it is possible for the thing> to keep growing back or if it is obvious as I> thought.. they did not know what they were doing. I> was seeing ENT's that basically were using me as> there ginny pigs. They gutted me out and left me> with nothing. I know see a wonderful neuro/otologist> and he is in the process of rebuilding my whole> middle ear space and putting in prosthesis to> hopefully give me back some hearing ( I have 50% in> both ears right now). He has down 3 procedures on> each ear and hopefully we are almost done... these 6> have

been over the past 18 months and it is hard but> after the neglect my other doctors did before I> became educated on what was wrong with me I wanted> to make sure this is done right.> > I would love to hear about anyone who has had this> thing removed and not had a regrowth or in how long> did they get a regrowth?> > Amber > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with> Mobile. Try it now.__________________________________________________________Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping

Looking for last minute shopping deals? Find them fast with Search.

[Guest guest]

If you are asking me, yes. I have about 35% hearing loss in that ear. It has been that way

fairly steady for the last 40+ years. I can't hear very high pitched sounds and

loud noises cause the insert to buzz.

But that is if you are asking me.

WAC

On Sun, Mar 23, 2008 at 9:21 PM, amber krasny <am81576@...> wrote:

So in your opinions of research over these years would you say mine has been here for 11 years now because it was never completely removed? I thought I read it is slow growing so for there to be problems right after a surgery... it makes me think it was never completely removed.

Just looking for some opinions...

Tom Hansen <pingmn123@...> wrote:

I had a Modified Radical in 1979 for my 3rd operation,have not had c-toma since. I swim without a ear plug,had reconstruction sucessfully. Tom Hansen--- amber krasny <am81576@...> wrote:

> Hi,> > I have had 16 total surgeries in my life and I> believe the reason is because my original doc's were> not removing it properly. I was just wondering if> over a span of 11 years it is possible for the thing

> to keep growing back or if it is obvious as I> thought.. they did not know what they were doing. I> was seeing ENT's that basically were using me as> there ginny pigs. They gutted me out and left me

> with nothing. I know see a wonderful neuro/otologist> and he is in the process of rebuilding my whole> middle ear space and putting in prosthesis to> hopefully give me back some hearing ( I have 50% in

> both ears right now). He has down 3 procedures on> each ear and hopefully we are almost done... these 6> have been over the past 18 months and it is hard but> after the neglect my other doctors did before I

> became educated on what was wrong with me I wanted> to make sure this is done right.> > I would love to hear about anyone who has had this> thing removed and not had a regrowth or in how long

> did they get a regrowth?> > Amber > > > > > ---------------------------------> Be a better friend, newshound, and know-it-all with> Mobile. Try it now.

__________________________________________________________Looking for last minute shopping deals? Find them fast with Search. http://tools.search./newsearch/category.php?category=shopping

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-- Remember: If you light a man a fire, you warm him for the night.

If you light a man ON fire, you warm him for the rest of his life.

[Guest guest]

Amber,

My doctor has stressed that leaving behind one diseased cell is all that

it takes for a fast recurrence. Beyond that, they really can't do

anything for our eustachian tube malfunction - yet (keep hope alive

though). So, the chance that negative pressure will build up in our

middle ear, tug on the back of our ear drum, etc., is unfortunately a

concern. That's why we go back for inspections.

Matt

amber krasny wrote:

> So in your opinions of research over these years would you say mine

> has been here for 11 years now because it was never completely

> removed? I thought I read it is slow growing so for there to be

> problems right after a surgery... it makes me think it was never

> completely removed.

>

> Just looking for some opinions...

>

>

> */Tom Hansen <pingmn123@...>/* wrote:

>

> I had a Modified Radical in 1979 for my 3rd operation,

> have not had c-toma since. I swim without a ear plug,

> had reconstruction sucessfully.

>

> Tom Hansen

>

> --- amber krasny <am81576@... <mailto:am81576%40>>

> wrote:

>

> > Hi,

> >

> > I have had 16 total surgeries in my life and I

> > believe the reason is because my original doc's were

> > not removing it properly. I was just wondering if

> > over a span of 11 years it is possible for the thing

> > to keep growing back or if it is obvious as I

> > thought.. they did not know what they were doing. I

> > was seeing ENT's that basically were using me as

> > there ginny pigs. They gutted me out and left me

> > with nothing. I know see a wonderful neuro/otologist

> > and he is in the process of rebuilding my whole

> > middle ear space and putting in prosthesis to

> > hopefully give me back some hearing ( I have 50% in

> > both ears right now). He has down 3 procedures on

> > each ear and hopefully we are almost done... these 6

> > have been over the past 18 months and it is hard but

> > after the neglect my other doctors did before I

> > became educated on what was wrong with me I wanted

> > to make sure this is done right.

> >

> > I would love to hear about anyone who has had this

> > thing removed and not had a regrowth or in how long

> > did they get a regrowth?

> >

> > Amber

> >

> >

> >

> >

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

> > Be a better friend, newshound, and know-it-all with

> > Mobile. Try it now.

>

> __________________________________________________________

> Looking for last minute shopping deals?

> Find them fast with Search.

> http://tools.search./newsearch/category.php?category=shopping

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>

>

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[Guest guest]

If it does to get totally removed, it will come back.

all it take is a small cell that you can't see and it

back in a matter of time...

tom

--- "

[Guest guest]

Hi Amber,

That is a lot of regrowths! I had my first surgery in 1984, then

another 11 years later. It has been 13 years since that one now and as

of my last check up (last month), I'm fine. I think it does depend a

lot on the experience of the doctors. How many regrowths did you have?

I'm guessing that you had more than one surgery for some of them... or

did they say it grew back 16 times? Hopefully you have a really good

doctor now.

I did have a surgery to try to rebuild my ear back in 1986, but the

doctor said that the prosthesis basically hid the regrowth from being

obvious early on, and now my ear is what I think they call " wall down "

so they can see in there and scrape out any cells that start to grow.

I'm not sure if I have that exactly right. It has been a very long time

since it was explained to me and like I said, I haven't had a problem

with the c-toma in 13 years.

Good luck!