RE: Confused on some points.

[Guest guest]

Hi ,

I would definitely seek a 2nd opinion. Sometimes ENTs aren't as

experienced with Ctomas as otologists. I definitely understand your

resistance and concern with losing more hearing and the bones in your

right ear. The problem with ctoma is that they can not tell if it is

extensive until they go in and look. Waiting means you are risking

having ctoma spread into your mastoid etc. Losing the bones can

really be the least of your problems (vertigo, tinnitus, meningitis,

permanent issues)

I have lost all of the bones in my left ear and just had OCR to

recoup my hearing. Although the thought of having my hearing back, a

clean ear with an intact eardrum has sincerely become my 1st

priority (I even considered not having OCR to ensure my ear drum had

the best chance of staying intact).

My doctors have not had me wait more than 1 month for ctoma surgery,

so I have always felt a sense of urgency to have it done. You are

asking the right questions, go with your gut feeling.

Laurel

>

> Hey all I just recently got diagnosed with a ctoma and even after

the

> doctors explanation I was confused about some things. Subsequent

> reading has cleared up some initial questions but opened up a whole

> slew of other ones. The ctoma is in my right ear and was discovered

> due to an outter ear infection I had treated. I do not have any

pain

> and my ear infections are not frequent (although I had 2 over a

years

> span after several years of having none).

>

> The main thing I am confused about though is that the ENT has

> explained it to me such that it's something that will require

surgery

> eventually but there is no huge rush and that for the time being I

> should just come in regularly to get my ears cleaned out (they don't

> seem to have drainage problems but wax and junk accumulates in the

> canal). Basically untill I decide it's time to take care of it. He

> also told me though that there was no way to know the extent of the

> ctoma untill doing the actual surgery.

>

> Considering the possible repercussions the attitude of just waiting

it

> out seemed kind of contradictory. I would have the surgery right

away

> but while my hearing in the right ear isn't great it's still not at

a

> level that has even led me to seek a hearing aid(although I probably

> should). If I have the surgery and the bones have to be removed

when

> I could of waited and had them removed later I will deffinetly

regret

> that.

>

> Yet all the stories and what not I've read seem to indicate waiting

> isn't the norm with this. My doctor seems to have past expierence

> with this sort of thing but I still find this contradiction

confusing.

> If anyone has heard of doctors of saying waiting is okay before I'd

> like to hear about it.

>

[Guest guest]

hey, howyou going shawn,

I was diagnosed in 2003 and am still waititng for my surgery ..... are you

sure you are not from aussie world because they are very slow to fix so

called serious problems here.. Anyway it took many visits at the same clinic

with various ents and eventually found the truth to the problem and the

seriousness. I had the same version of will not know paralysis until surgery

or what parts of my facial nerves would be attached until after...bla bla

;.... not very much help. I find this site has more info than any doctor

that I know and has a Wide range of experiences.. I am yet to see what

happens after my first surgery when it happens and can compare notes with

the members of this club. I thank the person who started this website and

the members who have joined.. Bless you all .You are all a world of

insight. stay in contact with this group and you will stay informed

and re-assured through other members. I hope all goes well . Sharon IPSWICH

QLD AUSTRALIA

>From: " " <jartando@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: Confused on some points.

>Date: Thu, 06 Apr 2006 08:59:31 -0000

>

>Hey all I just recently got diagnosed with a ctoma and even after the

>doctors explanation I was confused about some things. Subsequent

>reading has cleared up some initial questions but opened up a whole

>slew of other ones. The ctoma is in my right ear and was discovered

>due to an outter ear infection I had treated. I do not have any pain

>and my ear infections are not frequent (although I had 2 over a years

>span after several years of having none).

>

>The main thing I am confused about though is that the ENT has

>explained it to me such that it's something that will require surgery

>eventually but there is no huge rush and that for the time being I

>should just come in regularly to get my ears cleaned out (they don't

>seem to have drainage problems but wax and junk accumulates in the

>canal). Basically untill I decide it's time to take care of it. He

>also told me though that there was no way to know the extent of the

>ctoma untill doing the actual surgery.

>

>Considering the possible repercussions the attitude of just waiting it

>out seemed kind of contradictory. I would have the surgery right away

>but while my hearing in the right ear isn't great it's still not at a

>level that has even led me to seek a hearing aid(although I probably

>should). If I have the surgery and the bones have to be removed when

>I could of waited and had them removed later I will deffinetly regret

>that.

>

>Yet all the stories and what not I've read seem to indicate waiting

>isn't the norm with this. My doctor seems to have past expierence

>with this sort of thing but I still find this contradiction confusing.

> If anyone has heard of doctors of saying waiting is okay before I'd

>like to hear about it.

>

>

>

>

>

>

[Guest guest]

Hi ,

I was told there was no great rush for my op. I read

on the net that they grow about 1mm per year. When I

had the op six months down the line two of my bones

were destroyed. I would have paid to go private if I'd

have known waiting would cause this to occur. I think

it's a disgrace!

Helen

--- <jartando@...> wrote:

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

Hey all I just recently got diagnosed with a ctoma and

even after the

doctors explanation I was confused about some things.

Subsequent

reading has cleared up some initial questions but

opened up a whole

slew of other ones. The ctoma is in my right ear and

was discovered

due to an outter ear infection I had treated. I do

not have any pain

and my ear infections are not frequent (although I had

2 over a years

span after several years of having none).

The main thing I am confused about though is that the

ENT has

explained it to me such that it's something that will

require surgery

eventually but there is no huge rush and that for the

time being I

should just come in regularly to get my ears cleaned

out (they don't

seem to have drainage problems but wax and junk

accumulates in the

canal). Basically untill I decide it's time to take

care of it. He

also told me though that there was no way to know the

extent of the

ctoma untill doing the actual surgery.

Considering the possible repercussions the attitude of

just waiting it

out seemed kind of contradictory. I would have the

surgery right away

but while my hearing in the right ear isn't great it's

still not at a

level that has even led me to seek a hearing

aid(although I probably

should). If I have the surgery and the bones have to

be removed when

I could of waited and had them removed later I will

deffinetly regret

that.

Yet all the stories and what not I've read seem to

indicate waiting

isn't the norm with this. My doctor seems to have

past expierence

with this sort of thing but I still find this

contradiction confusing.

If anyone has heard of doctors of saying waiting is

okay before I'd

like to hear about it.

[Guest guest]

,

It seems like all docs have different ideas about this. My sons ENT told

us that it grows so slowly that waiting on the surgery wasn't a big deal.

When it was removed the surgeon was surprised how big it was and they did

remove 2 of his hearing bones. A 2nd look surgery was scheduled 6 months

later. That surgery was put off another 2 months because both the ENT and

the surgeon didn't see any regrowth. When the surgery was done (8 months

after the 1st removal and because we pushed for it) we were all surprised to

see the c'toma had come back and was bigger than the 1st c'toma they

removed. This resulted in a CWD surgery. In my opinion, you should not wait.

It may grow slowly in some ppl, but obviously much faster in others. You

don't know which you are until you fall into a situation where it comes back

like it did in my son. Good luck.

Barb

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

>Hey all I just recently got diagnosed with a ctoma and

>even after the

>doctors explanation I was confused about some things.

>Subsequent

>reading has cleared up some initial questions but

>opened up a whole

>slew of other ones. The ctoma is in my right ear and

>was discovered

>due to an outter ear infection I had treated. I do

>not have any pain

>and my ear infections are not frequent (although I had

>2 over a years

>span after several years of having none).

>

>The main thing I am confused about though is that the

>ENT has

>explained it to me such that it's something that will

>require surgery

>eventually but there is no huge rush and that for the

>time being I

>should just come in regularly to get my ears cleaned

>out (they don't

>seem to have drainage problems but wax and junk

>accumulates in the

>canal). Basically untill I decide it's time to take

>care of it. He

>also told me though that there was no way to know the

>extent of the

>ctoma untill doing the actual surgery.

>

>Considering the possible repercussions the attitude of

>just waiting it

>out seemed kind of contradictory. I would have the

>surgery right away

>but while my hearing in the right ear isn't great it's

>still not at a

>level that has even led me to seek a hearing

>aid(although I probably

>should). If I have the surgery and the bones have to

>be removed when

>I could of waited and had them removed later I will

>deffinetly regret

>that.

>

>Yet all the stories and what not I've read seem to

>indicate waiting

>isn't the norm with this. My doctor seems to have

>past expierence

>with this sort of thing but I still find this

>contradiction confusing.

> If anyone has heard of doctors of saying waiting is

>okay before I'd

>like to hear about it.

>

>

>

>

>

>

>

>

>

[Guest guest]

When I found out I had a c-toma, I wanted it out right away. After

reading about the possibility of it growing into my brain cavity, I

didn't want to wait. Perhaps I could have waited, but why? The

longer I waited, the more damage it was going to do.

Gerry

>

> ,

> It seems like all docs have different ideas about this. My sons

ENT told

> us that it grows so slowly that waiting on the surgery wasn't a

big deal.

> When it was removed the surgeon was surprised how big it was and

they did

> remove 2 of his hearing bones. A 2nd look surgery was scheduled 6

months

> later. That surgery was put off another 2 months because both the

ENT and

> the surgeon didn't see any regrowth. When the surgery was done (8

months

> after the 1st removal and because we pushed for it) we were all

surprised to

> see the c'toma had come back and was bigger than the 1st c'toma

they

> removed. This resulted in a CWD surgery. In my opinion, you should

not wait.

> It may grow slowly in some ppl, but obviously much faster in

others. You

> don't know which you are until you fall into a situation where it

comes back

> like it did in my son. Good luck.

> Barb

>

>

>

>

>

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

> >Hey all I just recently got diagnosed with a ctoma and

> >even after the

> >doctors explanation I was confused about some things.

> >Subsequent

> >reading has cleared up some initial questions but

> >opened up a whole

> >slew of other ones. The ctoma is in my right ear and

> >was discovered

> >due to an outter ear infection I had treated. I do

> >not have any pain

> >and my ear infections are not frequent (although I had

> >2 over a years

> >span after several years of having none).

> >

> >The main thing I am confused about though is that the

> >ENT has

> >explained it to me such that it's something that will

> >require surgery

> >eventually but there is no huge rush and that for the

> >time being I

> >should just come in regularly to get my ears cleaned

> >out (they don't

> >seem to have drainage problems but wax and junk

> >accumulates in the

> >canal). Basically untill I decide it's time to take

> >care of it. He

> >also told me though that there was no way to know the

> >extent of the

> >ctoma untill doing the actual surgery.

> >

> >Considering the possible repercussions the attitude of

> >just waiting it

> >out seemed kind of contradictory. I would have the

> >surgery right away

> >but while my hearing in the right ear isn't great it's

> >still not at a

> >level that has even led me to seek a hearing

> >aid(although I probably

> >should). If I have the surgery and the bones have to

> >be removed when

> >I could of waited and had them removed later I will

> >deffinetly regret

> >that.

> >

> >Yet all the stories and what not I've read seem to

> >indicate waiting

> >isn't the norm with this. My doctor seems to have

> >past expierence

> >with this sort of thing but I still find this

> >contradiction confusing.

> > If anyone has heard of doctors of saying waiting is

> >okay before I'd

> >like to hear about it.

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

It takes a long time in most to get to the brain, ask

your Doc on how far he or she thinks it has been

growing. Or in other words how long you have had

c-toma. You will have some damage but it usually can

not be decided until they get inside your ear and see

what has been happening....

tom hansen

--- Gerry <gerrydel@...> wrote:

>

> When I found out I had a c-toma, I wanted it out

> right away. After

> reading about the possibility of it growing into my

> brain cavity, I

> didn't want to wait. Perhaps I could have waited,

> but why? The

> longer I waited, the more damage it was going to do.

>

>

> Gerry

>

>

>

> >

> > ,

> > It seems like all docs have different ideas

> about this. My sons

> ENT told

> > us that it grows so slowly that waiting on the

> surgery wasn't a

> big deal.

> > When it was removed the surgeon was surprised how

> big it was and

> they did

> > remove 2 of his hearing bones. A 2nd look surgery

> was scheduled 6

> months

> > later. That surgery was put off another 2 months

> because both the

> ENT and

> > the surgeon didn't see any regrowth. When the

> surgery was done (8

> months

> > after the 1st removal and because we pushed for

> it) we were all

> surprised to

> > see the c'toma had come back and was bigger than

> the 1st c'toma

> they

> > removed. This resulted in a CWD surgery. In my

> opinion, you should

> not wait.

> > It may grow slowly in some ppl, but obviously much

> faster in

> others. You

> > don't know which you are until you fall into a

> situation where it

> comes back

> > like it did in my son. Good luck.

> > Barb

> >

> >

> >

> >

> >

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

> > >Hey all I just recently got diagnosed with a

> ctoma and

> > >even after the

> > >doctors explanation I was confused about some

> things.

> > >Subsequent

> > >reading has cleared up some initial questions but

> > >opened up a whole

> > >slew of other ones. The ctoma is in my right ear

> and

> > >was discovered

> > >due to an outter ear infection I had treated. I

> do

> > >not have any pain

> > >and my ear infections are not frequent (although

> I had

> > >2 over a years

> > >span after several years of having none).

> > >

> > >The main thing I am confused about though is that

> the

> > >ENT has

> > >explained it to me such that it's something that

> will

> > >require surgery

> > >eventually but there is no huge rush and that for

> the

> > >time being I

> > >should just come in regularly to get my ears

> cleaned

> > >out (they don't

> > >seem to have drainage problems but wax and junk

> > >accumulates in the

> > >canal). Basically untill I decide it's time to

> take

> > >care of it. He

> > >also told me though that there was no way to know

> the

> > >extent of the

> > >ctoma untill doing the actual surgery.

> > >

> > >Considering the possible repercussions the

> attitude of

> > >just waiting it

> > >out seemed kind of contradictory. I would have

> the

> > >surgery right away

> > >but while my hearing in the right ear isn't great

> it's

> > >still not at a

> > >level that has even led me to seek a hearing

> > >aid(although I probably

> > >should). If I have the surgery and the bones

> have to

> > >be removed when

> > >I could of waited and had them removed later I

> will

> > >deffinetly regret

> > >that.

> > >

> > >Yet all the stories and what not I've read seem

> to

> > >indicate waiting

> > >isn't the norm with this. My doctor seems to

> have

> > >past expierence

> > >with this sort of thing but I still find this

> > >contradiction confusing.

> > > If anyone has heard of doctors of saying

> waiting is

> > >okay before I'd

> > >like to hear about it.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

From what I've experienced, they can't really tell how

extensive a c-toma is until they operate. I can't see

any reason for someone to hold off on this surgery.

--- Tom Hansen <pingmn123@...> wrote:

> It takes a long time in most to get to the brain,

> ask

> your Doc on how far he or she thinks it has been

> growing. Or in other words how long you have had

> c-toma. You will have some damage but it usually

> can

> not be decided until they get inside your ear and

> see

> what has been happening....

>

>

> tom hansen

>

>

>

>

> --- Gerry <gerrydel@...> wrote:

>

> >

> > When I found out I had a c-toma, I wanted it out

> > right away. After

> > reading about the possibility of it growing into

> my

> > brain cavity, I

> > didn't want to wait. Perhaps I could have waited,

> > but why? The

> > longer I waited, the more damage it was going to

> do.

> >

> >

> > Gerry

> >

> >

> >

> > >

> > > ,

> > > It seems like all docs have different ideas

> > about this. My sons

> > ENT told

> > > us that it grows so slowly that waiting on the

> > surgery wasn't a

> > big deal.

> > > When it was removed the surgeon was surprised

> how

> > big it was and

> > they did

> > > remove 2 of his hearing bones. A 2nd look

> surgery

> > was scheduled 6

> > months

> > > later. That surgery was put off another 2 months

> > because both the

> > ENT and

> > > the surgeon didn't see any regrowth. When the

> > surgery was done (8

> > months

> > > after the 1st removal and because we pushed for

> > it) we were all

> > surprised to

> > > see the c'toma had come back and was bigger than

> > the 1st c'toma

> > they

> > > removed. This resulted in a CWD surgery. In my

> > opinion, you should

> > not wait.

> > > It may grow slowly in some ppl, but obviously

> much

> > faster in

> > others. You

> > > don't know which you are until you fall into a

> > situation where it

> > comes back

> > > like it did in my son. Good luck.

> > > Barb

> > >

> > >

> > >

> > >

> > >

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

> > > >Hey all I just recently got diagnosed with a

> > ctoma and

> > > >even after the

> > > >doctors explanation I was confused about some

> > things.

> > > >Subsequent

> > > >reading has cleared up some initial questions

> but

> > > >opened up a whole

> > > >slew of other ones. The ctoma is in my right

> ear

> > and

> > > >was discovered

> > > >due to an outter ear infection I had treated.

> I

> > do

> > > >not have any pain

> > > >and my ear infections are not frequent

> (although

> > I had

> > > >2 over a years

> > > >span after several years of having none).

> > > >

> > > >The main thing I am confused about though is

> that

> > the

> > > >ENT has

> > > >explained it to me such that it's something

> that

> > will

> > > >require surgery

> > > >eventually but there is no huge rush and that

> for

> > the

> > > >time being I

> > > >should just come in regularly to get my ears

> > cleaned

> > > >out (they don't

> > > >seem to have drainage problems but wax and junk

> > > >accumulates in the

> > > >canal). Basically untill I decide it's time to

> > take

> > > >care of it. He

> > > >also told me though that there was no way to

> know

> > the

> > > >extent of the

> > > >ctoma untill doing the actual surgery.

> > > >

> > > >Considering the possible repercussions the

> > attitude of

> > > >just waiting it

> > > >out seemed kind of contradictory. I would have

> > the

> > > >surgery right away

> > > >but while my hearing in the right ear isn't

> great

> > it's

> > > >still not at a

> > > >level that has even led me to seek a hearing

> > > >aid(although I probably

> > > >should). If I have the surgery and the bones

> > have to

> > > >be removed when

> > > >I could of waited and had them removed later I

> > will

> > > >deffinetly regret

> > > >that.

> > > >

> > > >Yet all the stories and what not I've read seem

> > to

> > > >indicate waiting

> > > >isn't the norm with this. My doctor seems to

> > have

> > > >past expierence

> > > >with this sort of thing but I still find this

> > > >contradiction confusing.

> > > > If anyone has heard of doctors of saying

> > waiting is

> > > >okay before I'd

> > > >like to hear about it.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

[Guest guest]

The reason why they often hold off is that you can loose perfectly good

hearing due to the little bones being removed and the damage that can be

made to them doing the surgery. I left a C Toma for around 5 years and

enjoyed near perfect hearing within this time. When they operated I lost a

lot of hearing that doubtfully can be replaced until it can be certain there

will be no reocourance of the C toma. If they were to operate sooner I would

have lost my hearing a lot earlier.

Robin

Re: Re: Confused on some points.

> From what I've experienced, they can't really tell how

> extensive a c-toma is until they operate. I can't see

> any reason for someone to hold off on this surgery.

>

> --- Tom Hansen <pingmn123@...> wrote:

>

>> It takes a long time in most to get to the brain,

>> ask

>> your Doc on how far he or she thinks it has been

>> growing. Or in other words how long you have had

>> c-toma. You will have some damage but it usually

>> can

>> not be decided until they get inside your ear and

>> see

>> what has been happening....

>>

>>

>> tom hansen

>>

>>

>>

>>

>> --- Gerry <gerrydel@...> wrote:

>>

>> >

>> > When I found out I had a c-toma, I wanted it out

>> > right away. After

>> > reading about the possibility of it growing into

>> my

>> > brain cavity, I

>> > didn't want to wait. Perhaps I could have waited,

>> > but why? The

>> > longer I waited, the more damage it was going to

>> do.

>> >

>> >

>> > Gerry

>> >

>> >

>> >

>> > >

>> > > ,

>> > > It seems like all docs have different ideas

>> > about this. My sons

>> > ENT told

>> > > us that it grows so slowly that waiting on the

>> > surgery wasn't a

>> > big deal.

>> > > When it was removed the surgeon was surprised

>> how

>> > big it was and

>> > they did

>> > > remove 2 of his hearing bones. A 2nd look

>> surgery

>> > was scheduled 6

>> > months

>> > > later. That surgery was put off another 2 months

>> > because both the

>> > ENT and

>> > > the surgeon didn't see any regrowth. When the

>> > surgery was done (8

>> > months

>> > > after the 1st removal and because we pushed for

>> > it) we were all

>> > surprised to

>> > > see the c'toma had come back and was bigger than

>> > the 1st c'toma

>> > they

>> > > removed. This resulted in a CWD surgery. In my

>> > opinion, you should

>> > not wait.

>> > > It may grow slowly in some ppl, but obviously

>> much

>> > faster in

>> > others. You

>> > > don't know which you are until you fall into a

>> > situation where it

>> > comes back

>> > > like it did in my son. Good luck.

>> > > Barb

>> > >

>> > >

>> > >

>> > >

>> > >

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

>> > > >Hey all I just recently got diagnosed with a

>> > ctoma and

>> > > >even after the

>> > > >doctors explanation I was confused about some

>> > things.

>> > > >Subsequent

>> > > >reading has cleared up some initial questions

>> but

>> > > >opened up a whole

>> > > >slew of other ones. The ctoma is in my right

>> ear

>> > and

>> > > >was discovered

>> > > >due to an outter ear infection I had treated.

>> I

>> > do

>> > > >not have any pain

>> > > >and my ear infections are not frequent

>> (although

>> > I had

>> > > >2 over a years

>> > > >span after several years of having none).

>> > > >

>> > > >The main thing I am confused about though is

>> that

>> > the

>> > > >ENT has

>> > > >explained it to me such that it's something

>> that

>> > will

>> > > >require surgery

>> > > >eventually but there is no huge rush and that

>> for

>> > the

>> > > >time being I

>> > > >should just come in regularly to get my ears

>> > cleaned

>> > > >out (they don't

>> > > >seem to have drainage problems but wax and junk

>> > > >accumulates in the

>> > > >canal). Basically untill I decide it's time to

>> > take

>> > > >care of it. He

>> > > >also told me though that there was no way to

>> know

>> > the

>> > > >extent of the

>> > > >ctoma untill doing the actual surgery.

>> > > >

>> > > >Considering the possible repercussions the

>> > attitude of

>> > > >just waiting it

>> > > >out seemed kind of contradictory. I would have

>> > the

>> > > >surgery right away

>> > > >but while my hearing in the right ear isn't

>> great

>> > it's

>> > > >still not at a

>> > > >level that has even led me to seek a hearing

>> > > >aid(although I probably

>> > > >should). If I have the surgery and the bones

>> > have to

>> > > >be removed when

>> > > >I could of waited and had them removed later I

>> > will

>> > > >deffinetly regret

>> > > >that.

>> > > >

>> > > >Yet all the stories and what not I've read seem

>> > to

>> > > >indicate waiting

>> > > >isn't the norm with this. My doctor seems to

>> > have

>> > > >past expierence

>> > > >with this sort of thing but I still find this

>> > > >contradiction confusing.

>> > > > If anyone has heard of doctors of saying

>> > waiting is

>> > > >okay before I'd

>> > > >like to hear about it.

>> > > >

>> > > >

>> > > >

>> > > >

>> > > >

>> > > >

>> > > >

>> > > >

>> > > >

[Guest guest]

I agree, do not hold off once you are diagnosed, the

earlier they get it out the less damage it does.

--- Laurel <uncw2@...> wrote:

> From what I've experienced, they can't really tell

> how

> extensive a c-toma is until they operate. I can't

> see

> any reason for someone to hold off on this surgery.

>

> --- Tom Hansen <pingmn123@...> wrote:

>

> > It takes a long time in most to get to the brain,

> > ask

> > your Doc on how far he or she thinks it has been

> > growing. Or in other words how long you have had

> > c-toma. You will have some damage but it usually

> > can

> > not be decided until they get inside your ear and

> > see

> > what has been happening....

> >

> >

> > tom hansen

> >

> >

> >

> >

> > --- Gerry <gerrydel@...> wrote:

> >

> > >

> > > When I found out I had a c-toma, I wanted it out

> > > right away. After

> > > reading about the possibility of it growing into

> > my

> > > brain cavity, I

> > > didn't want to wait. Perhaps I could have

> waited,

> > > but why? The

> > > longer I waited, the more damage it was going to

> > do.

> > >

> > >

> > > Gerry

> > >

> > >

> > >

> > > >

> > > > ,

> > > > It seems like all docs have different ideas

> > > about this. My sons

> > > ENT told

> > > > us that it grows so slowly that waiting on the

> > > surgery wasn't a

> > > big deal.

> > > > When it was removed the surgeon was surprised

> > how

> > > big it was and

> > > they did

> > > > remove 2 of his hearing bones. A 2nd look

> > surgery

> > > was scheduled 6

> > > months

> > > > later. That surgery was put off another 2

> months

> > > because both the

> > > ENT and

> > > > the surgeon didn't see any regrowth. When the

> > > surgery was done (8

> > > months

> > > > after the 1st removal and because we pushed

> for

> > > it) we were all

> > > surprised to

> > > > see the c'toma had come back and was bigger

> than

> > > the 1st c'toma

> > > they

> > > > removed. This resulted in a CWD surgery. In my

> > > opinion, you should

> > > not wait.

> > > > It may grow slowly in some ppl, but obviously

> > much

> > > faster in

> > > others. You

> > > > don't know which you are until you fall into a

> > > situation where it

> > > comes back

> > > > like it did in my son. Good luck.

> > > > Barb

> > > >

> > > >

> > > >

> > > >

> > > >

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

> > > > >Hey all I just recently got diagnosed with a

> > > ctoma and

> > > > >even after the

> > > > >doctors explanation I was confused about some

> > > things.

> > > > >Subsequent

> > > > >reading has cleared up some initial questions

> > but

> > > > >opened up a whole

> > > > >slew of other ones. The ctoma is in my right

> > ear

> > > and

> > > > >was discovered

> > > > >due to an outter ear infection I had treated.

>

> > I

> > > do

> > > > >not have any pain

> > > > >and my ear infections are not frequent

> > (although

> > > I had

> > > > >2 over a years

> > > > >span after several years of having none).

> > > > >

> > > > >The main thing I am confused about though is

> > that

> > > the

> > > > >ENT has

> > > > >explained it to me such that it's something

> > that

> > > will

> > > > >require surgery

> > > > >eventually but there is no huge rush and that

> > for

> > > the

> > > > >time being I

> > > > >should just come in regularly to get my ears

> > > cleaned

> > > > >out (they don't

> > > > >seem to have drainage problems but wax and

> junk

> > > > >accumulates in the

> > > > >canal). Basically untill I decide it's time

> to

> > > take

> > > > >care of it. He

> > > > >also told me though that there was no way to

> > know

> > > the

> > > > >extent of the

> > > > >ctoma untill doing the actual surgery.

> > > > >

> > > > >Considering the possible repercussions the

> > > attitude of

> > > > >just waiting it

> > > > >out seemed kind of contradictory. I would

> have

> > > the

> > > > >surgery right away

> > > > >but while my hearing in the right ear isn't

> > great

> > > it's

> > > > >still not at a

> > > > >level that has even led me to seek a hearing

> > > > >aid(although I probably

> > > > >should). If I have the surgery and the bones

> > > have to

> > > > >be removed when

> > > > >I could of waited and had them removed later

> I

> > > will

> > > > >deffinetly regret

> > > > >that.

> > > > >

> > > > >Yet all the stories and what not I've read

> seem

> > > to

> > > > >indicate waiting

> > > > >isn't the norm with this. My doctor seems to

> > > have

> > > > >past expierence

> > > > >with this sort of thing but I still find this

> > > > >contradiction confusing.

> > > > > If anyone has heard of doctors of saying

> > > waiting is

> > > > >okay before I'd

> > > > >like to hear about it.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

I agree, do not hold off once you are diagnosed, the

earlier they get it out the less damage it does.

--- Laurel <uncw2@...> wrote:

> From what I've experienced, they can't really tell

> how

> extensive a c-toma is until they operate. I can't

> see

> any reason for someone to hold off on this surgery.

>

> --- Tom Hansen <pingmn123@...> wrote:

>

> > It takes a long time in most to get to the brain,

> > ask

> > your Doc on how far he or she thinks it has been

> > growing. Or in other words how long you have had

> > c-toma. You will have some damage but it usually

> > can

> > not be decided until they get inside your ear and

> > see

> > what has been happening....

> >

> >

> > tom hansen

> >

> >

> >

> >

> > --- Gerry <gerrydel@...> wrote:

> >

> > >

> > > When I found out I had a c-toma, I wanted it out

> > > right away. After

> > > reading about the possibility of it growing into

> > my

> > > brain cavity, I

> > > didn't want to wait. Perhaps I could have

> waited,

> > > but why? The

> > > longer I waited, the more damage it was going to

> > do.

> > >

> > >

> > > Gerry

> > >

> > >

> > >

> > > >

> > > > ,

> > > > It seems like all docs have different ideas

> > > about this. My sons

> > > ENT told

> > > > us that it grows so slowly that waiting on the

> > > surgery wasn't a

> > > big deal.

> > > > When it was removed the surgeon was surprised

> > how

> > > big it was and

> > > they did

> > > > remove 2 of his hearing bones. A 2nd look

> > surgery

> > > was scheduled 6

> > > months

> > > > later. That surgery was put off another 2

> months

> > > because both the

> > > ENT and

> > > > the surgeon didn't see any regrowth. When the

> > > surgery was done (8

> > > months

> > > > after the 1st removal and because we pushed

> for

> > > it) we were all

> > > surprised to

> > > > see the c'toma had come back and was bigger

> than

> > > the 1st c'toma

> > > they

> > > > removed. This resulted in a CWD surgery. In my

> > > opinion, you should

> > > not wait.

> > > > It may grow slowly in some ppl, but obviously

> > much

> > > faster in

> > > others. You

> > > > don't know which you are until you fall into a

> > > situation where it

> > > comes back

> > > > like it did in my son. Good luck.

> > > > Barb

> > > >

> > > >

> > > >

> > > >

> > > >

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

> > > > >Hey all I just recently got diagnosed with a

> > > ctoma and

> > > > >even after the

> > > > >doctors explanation I was confused about some

> > > things.

> > > > >Subsequent

> > > > >reading has cleared up some initial questions

> > but

> > > > >opened up a whole

> > > > >slew of other ones. The ctoma is in my right

> > ear

> > > and

> > > > >was discovered

> > > > >due to an outter ear infection I had treated.

>

> > I

> > > do

> > > > >not have any pain

> > > > >and my ear infections are not frequent

> > (although

> > > I had

> > > > >2 over a years

> > > > >span after several years of having none).

> > > > >

> > > > >The main thing I am confused about though is

> > that

> > > the

> > > > >ENT has

> > > > >explained it to me such that it's something

> > that

> > > will

> > > > >require surgery

> > > > >eventually but there is no huge rush and that

> > for

> > > the

> > > > >time being I

> > > > >should just come in regularly to get my ears

> > > cleaned

> > > > >out (they don't

> > > > >seem to have drainage problems but wax and

> junk

> > > > >accumulates in the

> > > > >canal). Basically untill I decide it's time

> to

> > > take

> > > > >care of it. He

> > > > >also told me though that there was no way to

> > know

> > > the

> > > > >extent of the

> > > > >ctoma untill doing the actual surgery.

> > > > >

> > > > >Considering the possible repercussions the

> > > attitude of

> > > > >just waiting it

> > > > >out seemed kind of contradictory. I would

> have

> > > the

> > > > >surgery right away

> > > > >but while my hearing in the right ear isn't

> > great

> > > it's

> > > > >still not at a

> > > > >level that has even led me to seek a hearing

> > > > >aid(although I probably

> > > > >should). If I have the surgery and the bones

> > > have to

> > > > >be removed when

> > > > >I could of waited and had them removed later

> I

> > > will

> > > > >deffinetly regret

> > > > >that.

> > > > >

> > > > >Yet all the stories and what not I've read

> seem

> > > to

> > > > >indicate waiting

> > > > >isn't the norm with this. My doctor seems to

> > > have

> > > > >past expierence

> > > > >with this sort of thing but I still find this

> > > > >contradiction confusing.

> > > > > If anyone has heard of doctors of saying

> > > waiting is

> > > > >okay before I'd

> > > > >like to hear about it.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

[Guest guest]

From what I was told, your were hearing because the

sound waves were bouncing off the tumor. While in the

meantime it was eating away at your hearing bones.

That is what makes your hearing go. I have not heard

too many different ideas on this and it sounds logical

to me. My hearing improved after my ctoma was removed

cuz it only got a little bit of one of my hearing

bones, it did not have long enough time to eat through

them all, therefore I do not need prosthetic/fake

bones. I have my own hearing bones intact due to the

toma being removed quickly. The tumor is like an acid

and eats at the bones and inner ear area. There is no

certainty of ctoma not recurring at least in any case

i have read or any case my doc has dealt with. I

still firmly beleive that you should get it out

a.s.a.p. nothing like prolonging something. Mine also

was mainly in the mastoid and on facial nerve.

Everyone's body is different though, I just am glad

that I have such a good doc. Have a great day

everyone!

--- Robin Van Rijn <ghost5b@...> wrote:

> The reason why they often hold off is that you can

> loose perfectly good

> hearing due to the little bones being removed and

> the damage that can be

> made to them doing the surgery. I left a C Toma for

> around 5 years and

> enjoyed near perfect hearing within this time. When

> they operated I lost a

> lot of hearing that doubtfully can be replaced until

> it can be certain there

> will be no reocourance of the C toma. If they were

> to operate sooner I would

> have lost my hearing a lot earlier.

>

> Robin

> Re: Re: Confused on some

> points.

>

>

> > From what I've experienced, they can't really tell

> how

> > extensive a c-toma is until they operate. I can't

> see

> > any reason for someone to hold off on this

> surgery.

> >

> > --- Tom Hansen <pingmn123@...> wrote:

> >

> >> It takes a long time in most to get to the brain,

> >> ask

> >> your Doc on how far he or she thinks it has been

> >> growing. Or in other words how long you have had

> >> c-toma. You will have some damage but it usually

> >> can

> >> not be decided until they get inside your ear and

> >> see

> >> what has been happening....

> >>

> >>

> >> tom hansen

> >>

> >>

> >>

> >>

> >> --- Gerry <gerrydel@...> wrote:

> >>

> >> >

> >> > When I found out I had a c-toma, I wanted it

> out

> >> > right away. After

> >> > reading about the possibility of it growing

> into

> >> my

> >> > brain cavity, I

> >> > didn't want to wait. Perhaps I could have

> waited,

> >> > but why? The

> >> > longer I waited, the more damage it was going

> to

> >> do.

> >> >

> >> >

> >> > Gerry

> >> >

> >> >

> >> >

> >> > >

> >> > > ,

> >> > > It seems like all docs have different ideas

> >> > about this. My sons

> >> > ENT told

> >> > > us that it grows so slowly that waiting on

> the

> >> > surgery wasn't a

> >> > big deal.

> >> > > When it was removed the surgeon was surprised

> >> how

> >> > big it was and

> >> > they did

> >> > > remove 2 of his hearing bones. A 2nd look

> >> surgery

> >> > was scheduled 6

> >> > months

> >> > > later. That surgery was put off another 2

> months

> >> > because both the

> >> > ENT and

> >> > > the surgeon didn't see any regrowth. When the

> >> > surgery was done (8

> >> > months

> >> > > after the 1st removal and because we pushed

> for

> >> > it) we were all

> >> > surprised to

> >> > > see the c'toma had come back and was bigger

> than

> >> > the 1st c'toma

> >> > they

> >> > > removed. This resulted in a CWD surgery. In

> my

> >> > opinion, you should

> >> > not wait.

> >> > > It may grow slowly in some ppl, but obviously

> >> much

> >> > faster in

> >> > others. You

> >> > > don't know which you are until you fall into

> a

> >> > situation where it

> >> > comes back

> >> > > like it did in my son. Good luck.

> >> > > Barb

> >> > >

> >> > >

> >> > >

> >> > >

> >> > >

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

> >> > > >Hey all I just recently got diagnosed with a

> >> > ctoma and

> >> > > >even after the

> >> > > >doctors explanation I was confused about

> some

> >> > things.

> >> > > >Subsequent

> >> > > >reading has cleared up some initial

> questions

> >> but

> >> > > >opened up a whole

> >> > > >slew of other ones. The ctoma is in my

> right

> >> ear

> >> > and

> >> > > >was discovered

> >> > > >due to an outter ear infection I had

> treated.

> >> I

> >> > do

> >> > > >not have any pain

> >> > > >and my ear infections are not frequent

> >> (although

> >> > I had

> >> > > >2 over a years

> >> > > >span after several years of having none).

> >> > > >

> >> > > >The main thing I am confused about though is

> >> that

> >> > the

> >> > > >ENT has

> >> > > >explained it to me such that it's something

> >> that

> >> > will

> >> > > >require surgery

> >> > > >eventually but there is no huge rush and

> that

> >> for

> >> > the

> >> > > >time being I

> >> > > >should just come in regularly to get my ears

> >> > cleaned

> >> > > >out (they don't

> >> > > >seem to have drainage problems but wax and

> junk

> >> > > >accumulates in the

> >> > > >canal). Basically untill I decide it's time

> to

> >> > take

> >> > > >care of it. He

> >> > > >also told me though that there was no way to

> >> know

> >> > the

> >> > > >extent of the

> >> > > >ctoma untill doing the actual surgery.

> >> > > >

> >> > > >Considering the possible repercussions the

> >> > attitude of

> >> > > >just waiting it

> >> > > >out seemed kind of contradictory. I would

> have

> >> > the

> >> > > >surgery right away

> >> > > >but while my hearing in the right ear isn't

> >> great

> >> > it's

> >> > > >still not at a

> >> > > >level that has even led me to seek a hearing

> >> > > >aid(although I probably

> >> > > >should). If I have the surgery and the

> bones

> >> > have to

> >> > > >be removed when

> >> > > >I could of waited and had them removed later

> I

> >> > will

> >> > > >deffinetly regret

>

=== message truncated ===

__________________________________________________