Re: new and shocking diagnosis

[Guest guest]

Your hearing may be OK for now, but if you do have c-toma, then it will

eventually deteriorate. I had mine for years and did not know it. It had

completely destroyed the ossicles (the little hearing bones), and sound was

being conducted through the c-toma itself. I could still hear fine.

Eventually, however, the infections started with the stinky discharge.

Additionally it ate a hole through to the ear cavity to the brain and my brain

was herniated into the middle ear.

(http://health.ph./group/cholesteatoma/photos/view/9fa3?b=1) It

will continue to grow and eat away at things until it is removed. The worst

part is the time between the removal and re-construction (if not at the same

time) because you can't hear well, but you can get a hearing aid to get you

through that period.

new and shocking diagnosis

I am in my 50's and have had no problems with my ears since childhood.

Oh, my hearing isn't 100% and hasn't been since then, but it's not too

bad. I went to an ENT doctor last week and he says I have

cholesteatomas in both ears, and has scheduled me for a CT scan in 3

days. After reading peoples stories on web sites, I am scared to

death. It seems like the surgery is worse that just living with this.

I don't want to loose my hearing - and I hate surgeries of any kind.

Anyone out there who chose not to have surgery, and is that even an

option? I guess I'll know more after the CT scan but I'm freaking out

now.

[Guest guest]

Surgery is the only cure for c-toma, and C-toma can

kill you if left untreated. Hopefully that explains

it to you. Has nothing to do if you can hear or not,

not hearing is a whole lot better than not breathing.

Not trying to scare you, however.....

tom hansen

--- deewhite1234 <deewhite1234@...> wrote:

> I am in my 50's and have had no problems with my

> ears since childhood.

> Oh, my hearing isn't 100% and hasn't been since

> then, but it's not too

> bad. I went to an ENT doctor last week and he says

> I have

> cholesteatomas in both ears, and has scheduled me

> for a CT scan in 3

> days. After reading peoples stories on web sites, I

> am scared to

> death. It seems like the surgery is worse that just

> living with this.

> I don't want to loose my hearing - and I hate

> surgeries of any kind.

> Anyone out there who chose not to have surgery, and

> is that even an

> option? I guess I'll know more after the CT scan

> but I'm freaking out

> now.

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

I agree with Tom, you need to have it done, prolonging

it is not worth what it can lead too. It just eats

away at your hearing bones, etc.... if you do not get

it removed. I absolutely hate surgery, i used to pass

out at the site of a needle! If I can get through it

anyone can! I have got to be the biggest baby out

there! My family laughs at me about how much of a baby

I am. I still have to go for my second surgery, it

was putoff due to dizziness(vertigo). I have had a

vng/eng balance tests, also an mri done to find out

why this happened. We had to cancel second surgery

due to this. It was scheduled for April 28th. I have

an appt. May 24th (doc on vacation for 2 weeks) for

him to look at all my tests results then we go from

there with scheduling surgery. I may put it off until

sept. if I can. I go on 2 week vacation every July

and do not want to do the surgery too close to that,

but whatever the doc sais, I will do. Good luck to

ya.......

~~LISA~~ Orlando, Fl.

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

> Surgery is the only cure for c-toma, and C-toma can

> kill you if left untreated. Hopefully that explains

> it to you. Has nothing to do if you can hear or

> not,

> not hearing is a whole lot better than not

> breathing.

> Not trying to scare you, however.....

>

> tom hansen

>

> --- deewhite1234 <deewhite1234@...> wrote:

>

> > I am in my 50's and have had no problems with my

> > ears since childhood.

> > Oh, my hearing isn't 100% and hasn't been since

> > then, but it's not too

> > bad. I went to an ENT doctor last week and he

> says

> > I have

> > cholesteatomas in both ears, and has scheduled me

> > for a CT scan in 3

> > days. After reading peoples stories on web sites,

> I

> > am scared to

> > death. It seems like the surgery is worse that

> just

> > living with this.

> > I don't want to loose my hearing - and I hate

> > surgeries of any kind.

> > Anyone out there who chose not to have surgery,

> and

> > is that even an

> > option? I guess I'll know more after the CT scan

> > but I'm freaking out

> > now.

> >

> >

> >

> >

> >

> >

> >

>

>

> __________________________________________________

>

[Guest guest]

Definitely get it taken care of. I was diagnosed too late and now I have re-occuring facial paralysis\numbness\twitching. My first Ctoma surgery was last May and next week they are finally going to repair the hearing (ossicular chain reconstruction) in the same ear. It's fasinating how the ctoma was able to allow me to hear still... Surgerys are no fun, but fear not. A few months\years of discomfort will be worth it. Good luck.deewhite1234 <deewhite1234@...> wrote: I am in my 50's and have had no problems with my ears since childhood. Oh, my hearing isn't 100% and hasn't been since then, but it's not too bad. I went to an ENT doctor last week and he says I have cholesteatomas in both ears, and has scheduled me for a CT scan in 3 days. After reading peoples stories

on web sites, I am scared to death. It seems like the surgery is worse that just living with this. I don't want to loose my hearing - and I hate surgeries of any kind. Anyone out there who chose not to have surgery, and is that even an option? I guess I'll know more after the CT scan but I'm freaking out now.

Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less.

[Guest guest]

There is no guarentee that you WILL lose your hearing

if you have surgery, but there pretty much is a

guarentee that you will if you don't or if you wait

too long.

--- deewhite1234 <deewhite1234@...> wrote:

> I am in my 50's and have had no problems with my

> ears since childhood.

> Oh, my hearing isn't 100% and hasn't been since

> then, but it's not too

> bad. I went to an ENT doctor last week and he says

> I have

> cholesteatomas in both ears, and has scheduled me

> for a CT scan in 3

> days. After reading peoples stories on web sites, I

> am scared to

> death. It seems like the surgery is worse that just

> living with this.

> I don't want to loose my hearing - and I hate

> surgeries of any kind.

> Anyone out there who chose not to have surgery, and

> is that even an

> option? I guess I'll know more after the CT scan

> but I'm freaking out

> now.

>

>

>

>

>

>

>

__________________________________________________

[Guest guest]

, do you know how long you had yours until it was noticed? Did you have facial paralysis prior to surgery or as a result of?? That is what i am most nurvous about.... my surgery is in 4 weeks. Culp <jfculp@...> wrote: Definitely get it taken care of. I was diagnosed too late and now I have re-occuring facial paralysis\numbness\twitching. My first Ctoma surgery was last May and next week they are finally going to repair the hearing (ossicular chain reconstruction) in the same ear. It's fasinating how the ctoma was able to allow me to hear still... Surgerys are no fun, but fear not. A few months\years of discomfort will be worth it. Good luck.deewhite1234 <deewhite1234@...> wrote: I am in my 50's and have had no problems with my ears since childhood. Oh, my hearing isn't 100% and hasn't been since then, but it's not too bad. I went to an ENT doctor last week and he says I have cholesteatomas in both ears, and has scheduled me for a CT scan in 3 days. After reading peoples stories on web sites, I am scared to death. It seems like the surgery is worse that just living with this. I don't want to loose my hearing - and I hate surgeries of any kind. Anyone out there who chose not to have surgery, and is that even an option? I guess I'll know more after the CT scan but I'm freaking out now. Messenger with Voice. Make PC-to-Phone Calls to the US (and

30+ countries) for 2¢/min or less.

goes everywhere you do. Get it on your phone.

[Guest guest]

Anything you are afraid MIGHT happen with surgery WILL happen if you dont. (simple version answer)

Get amazing travel prices for air and hotel in one click on FareChase

[Guest guest]

My paralysis was pre-surgery - so don't worry, they use a facial nerve monitor that let's them know if they're too close to the nerve. I am 42 and have had ear problems since about the age of 6. My surgeon at the Michigan Ear Institute tells me I was mis-diagnosed for years and was given the wrong medication. My ears never totally healed after each infection. After the ossicular chain reconstruction next week, he wants to widen my sinus so that i can breath\drain much better than I do now (he hasn't told me if he'll widen the sinus before or after he works on my other ear). I am living with the numbness and occaisional twitching...it only affects my trumpet playing part of the time. With any luck, the surgery next week will take away the paralysis and make me into the next Louis Armstrong!. Take care Naomi. Good luck.Naomi Fisher

<gateacher26@...> wrote: , do you know how long you had yours until it was noticed? Did you have facial paralysis prior to surgery or as a result of?? That is what i am most nurvous about.... my surgery is in 4 weeks. Culp <jfculp@...> wrote: Definitely get it taken care of. I was diagnosed too late and now I have re-occuring facial paralysis\numbness\twitching. My first Ctoma surgery was last May and next week they are finally going to repair the hearing (ossicular chain reconstruction) in the same ear. It's fasinating how the ctoma was able to allow me to hear still... Surgerys are no fun, but fear not. A few months\years of discomfort will be worth it.

Good luck.deewhite1234 <deewhite1234@...> wrote: I am in my 50's and have had no problems with my ears since childhood. Oh, my hearing isn't 100% and hasn't been since then, but it's not too bad. I went to an ENT doctor last week and he says I have cholesteatomas in both ears, and has scheduled me for a CT scan in 3 days. After reading peoples stories on web sites, I am scared to death. It seems like the surgery is worse that just living with this. I don't want to loose my hearing - and I hate surgeries of any kind. Anyone out there who chose not to have surgery, and is that even an option? I guess I'll know more after the CT scan but I'm freaking out now. Messenger with Voice. Make PC-to-Phone Calls to the US (and 30+ countries) for 2¢/min or less. goes everywhere you do. Get it on your phone.

Get amazing travel prices for air and hotel in one click on FareChase

[Guest guest]

Don't be scared of the surgery. It has to be done.

When I had mine it all went well. I didn't even have

much pain afterwards. Chin up chuck!

--- deewhite1234 <deewhite1234@...> wrote:

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

I am in my 50's and have had no problems with my ears

since childhood.

Oh, my hearing isn't 100% and hasn't been since then,

but it's not too

bad. I went to an ENT doctor last week and he says I

have

cholesteatomas in both ears, and has scheduled me for

a CT scan in 3

days. After reading peoples stories on web sites, I

am scared to

death. It seems like the surgery is worse that just

living with this.

I don't want to loose my hearing - and I hate

surgeries of any kind.

Anyone out there who chose not to have surgery, and is

that even an

option? I guess I'll know more after the CT scan but

I'm freaking out

now.

[Guest guest]

Hi ,

I'm from Orlando area too, and wonder who and where is your physician?

I think that I may have a ctoma, but need someone to dx it. I have been

to 2 ENT docs; one says I have no problem, and the other says that my

submandibular gland has a mass in it. Do you or anyone have an

experience w/ ctoma and the sub. gland?

> >

> > > I am in my 50's and have had no problems with my

> > > ears since childhood.

> > > Oh, my hearing isn't 100% and hasn't been since

> > > then, but it's not too

> > > bad. I went to an ENT doctor last week and he

> > says

> > > I have

> > > cholesteatomas in both ears, and has scheduled me

> > > for a CT scan in 3

> > > days. After reading peoples stories on web sites,

> > I

> > > am scared to

> > > death. It seems like the surgery is worse that

> > just

> > > living with this.

> > > I don't want to loose my hearing - and I hate

> > > surgeries of any kind.

> > > Anyone out there who chose not to have surgery,

> > and

> > > is that even an

> > > option? I guess I'll know more after the CT scan

> > > but I'm freaking out

> > > now.

> > >

> > >

> > >

> > >

> > >

> > >

> > >

> >

> >

> > __________________________________________________

> >

[Guest guest]

Orlando, I am actually in Atlanta, but my High School friend is an Auidologist and when i told her i had a Ctoma she said i should see Dr. Silverstein in Sarasota. He is at sarasota memorial the website is http://www.earsinus.com/ and she studied some of his works when in school... apparently very good. If it was not for all the follow up visits i would go down there for the surgery (but i found a good guy in Atlanta)... you might want to check him out. Hes only about 2.5 hours from you.... (unlike the 9 from me:))mizewoods <mizewoods@...> wrote: Hi ,I'm from Orlando area too, and wonder who and where is your physician? I think that I may have a ctoma, but need someone to dx it. I have beento 2 ENT docs; one says I have no

problem, and the other says that mysubmandibular gland has a mass in it. Do you or anyone have anexperience w/ ctoma and the sub. gland?> >> > > I am in my 50's and have had no problems with my> >

> ears since childhood.> > > Oh, my hearing isn't 100% and hasn't been since> > > then, but it's not too> > > bad. I went to an ENT doctor last week and he> > says> > > I have> > > cholesteatomas in both ears, and has scheduled me> > > for a CT scan in 3> > > days. After reading peoples stories on web sites,> > I> > > am scared to> > > death. It seems like the surgery is worse that> > just> > > living with this.> > > I don't want to loose my hearing - and I hate> > > surgeries of any kind.> > > Anyone out there who chose not to have surgery,> > and> > > is that even an> > > option? I guess I'll know more after the CT scan> > > but I'm freaking out> > > now.> > >> > >> >

>> > >> > >> > >> > >> >> >> > __________________________________________________> >

[Guest guest]

My doc is Dr. Patni from The Ear, Nose, Throat and

Plastic Surgery Associates. They have at least 4

offices in the area, I go to michigan st. office, they

also have winter park, celebration and i think alt.

springs. My ent Dr. Fichera at the same place said

nothing was wrong, I insisted there was something in

there and then he found it. I then was switched from

Fichera to Patni since he is also an otologist and

neurologist with much more experience in the field.

Website is: www.entorlando.com and michigan st office

number is 407)422-4921. Good luck to ya

--- Naomi Fisher <gateacher26@...> wrote:

> Orlando,

> I am actually in Atlanta, but my High School

> friend is an Auidologist and when i told her i had a

> Ctoma she said i should see Dr. Silverstein in

> Sarasota. He is at sarasota memorial the website is

> http://www.earsinus.com/ and she studied some of

> his works when in school... apparently very good. If

> it was not for all the follow up visits i would go

> down there for the surgery (but i found a good guy

> in Atlanta)... you might want to check him out. Hes

> only about 2.5 hours from you.... (unlike the 9 from

> me:))

>

> mizewoods <mizewoods@...> wrote:

>

> Hi ,

>

> I'm from Orlando area too, and wonder who and where

> is your physician?

> I think that I may have a ctoma, but need someone to

> dx it. I have been

> to 2 ENT docs; one says I have no problem, and the

> other says that my

> submandibular gland has a mass in it. Do you or

> anyone have an

> experience w/ ctoma and the sub. gland?

>

> > >

> > > > I am in my 50's and have had no problems with

> my

> > > > ears since childhood.

> > > > Oh, my hearing isn't 100% and hasn't been

> since

> > > > then, but it's not too

> > > > bad. I went to an ENT doctor last week and he

> > > says

> > > > I have

> > > > cholesteatomas in both ears, and has scheduled

> me

> > > > for a CT scan in 3

> > > > days. After reading peoples stories on web

> sites,

> > > I

> > > > am scared to

> > > > death. It seems like the surgery is worse that

> > > just

> > > > living with this.

> > > > I don't want to loose my hearing - and I hate

> > > > surgeries of any kind.

> > > > Anyone out there who chose not to have

> surgery,

> > > and

> > > > is that even an

> > > > option? I guess I'll know more after the CT

> scan

> > > > but I'm freaking out

> > > > now.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > >

> > >

> > >

> __________________________________________________

> > >

[Guest guest]

Another excellent doctor in the orlando area that is a

Board Certified Neurotologist would be Dr.

Atkins, who is located in Celebration FL. His website

is www.floridaear.com. He just completed a removal

for me...and he was able to replace/rebuild some of

the mastoid bone loss area that he removed. He left

me with a normal ear canal structure due to this

replacement.

--- Naomi Fisher <gateacher26@...> wrote:

> Orlando,

> I am actually in Atlanta, but my High School

> friend is an Auidologist and when i told her i had a

> Ctoma she said i should see Dr. Silverstein in

> Sarasota. He is at sarasota memorial the website is

> http://www.earsinus.com/ and she studied some of

> his works when in school... apparently very good. If

> it was not for all the follow up visits i would go

> down there for the surgery (but i found a good guy

> in Atlanta)... you might want to check him out. Hes

> only about 2.5 hours from you.... (unlike the 9 from

> me:))

>

> mizewoods <mizewoods@...> wrote:

>

> Hi ,

>

> I'm from Orlando area too, and wonder who and where

> is your physician?

> I think that I may have a ctoma, but need someone to

> dx it. I have been

> to 2 ENT docs; one says I have no problem, and the

> other says that my

> submandibular gland has a mass in it. Do you or

> anyone have an

> experience w/ ctoma and the sub. gland?

>

> > >

> > > > I am in my 50's and have had no problems with

> my

> > > > ears since childhood.

> > > > Oh, my hearing isn't 100% and hasn't been

> since

> > > > then, but it's not too

> > > > bad. I went to an ENT doctor last week and he

> > > says

> > > > I have

> > > > cholesteatomas in both ears, and has scheduled

> me

> > > > for a CT scan in 3

> > > > days. After reading peoples stories on web

> sites,

> > > I

> > > > am scared to

> > > > death. It seems like the surgery is worse that

> > > just

> > > > living with this.

> > > > I don't want to loose my hearing - and I hate

> > > > surgeries of any kind.

> > > > Anyone out there who chose not to have

> surgery,

> > > and

> > > > is that even an

> > > > option? I guess I'll know more after the CT

> scan

> > > > but I'm freaking out

> > > > now.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > >

> > >

> > >

> __________________________________________________

> > >