Newly diagnosed

May 2, 2005

Becky,

For me I had a CWU procedure 4 years ago and went from

30 hearing to 70 percent hearing. So the gain was

significant. I had a CWU again to remove a massive

tumor and it knocked the reconstruction loose. So

today I had another reconstruction op. So in a few

weeks I will tell you the new results.

--- reckler66 <reckler@...> wrote:

> Hi Becky,

>

> I am new to the group and wish I had searched for it

> a couple of

> years ago. Just before my first occurence of c-toma

> was correctly

> diagnosed, I estimate I had lost over 80% of my

> hearing in one ear.

> After a CWU proceedure, it returned to a bit over

> %50 and better for

> some tone ranges. There was really no differnece

> before/after a

> second surgery.

>

> A metalic taste only appeared after surgery, on one

> side as the

> nerve that controls taste was cut. It goes away

> after a while.

>

> Rich

>

> >

> > Hi all. I just went for a hearing test yesterday.

> My dr. said that

> the

> > test indicated fluid where there was none, so he

> thought that the

> mass

> > behind my eardrum was a c-toma. I go for a CT scan

> on Thursday. I

> guess

> > my question would be this. Can anyone tell me what

> kind of hearing

> you

> > had before surgery and how much you retained or

> regained after

> surgery?

> > Also, I have not really had drainage, but there

> has been sharp

> shooting

> > pains for years. Does this mean I may have gone

> undiagnosed for

> years?

> > And one last question. In all the materials I have

> read there is a

> > mention of a metallic taste after surgery, but I

> have had a

> metallic

> > taste for about 2 weeks. Is this related? Thank

> you in advance.

> >

> becky

> > .

>

__________________________________________________

August 29, 2005

,

I have had 2 removals of Ctoma's and 2 reconstruction of the hearing bones. All on the same ear over a period of 4 years. I would recommend you get the operation because they need to rid your ear of infection. The longer you wait or the more infections you have the more damage will occur which will mean more permanent hearing loss. Sometimes surgery can bring some of your hearing back. If you think you hear fine then it is cause the sound is conducted through the tumor. IF left unattended, at it's worse case scenario it can cause meningitis of the lining of the brain. So hopefully your tumor is not 2 1/2 inches like mine was. Get the surgery and you will, in time feel better.

LISA <nyn8tve@...> wrote:

Hello everyone, I am new to the group and new to all of this. I have had problems with my left ear since i blew the eardrum back in 1988. There have been infections and losts of dizziness. I did not go to doctors for years due to not having medical insurance. I went to an ear.nose and throat specialist 2 yrs ago due to another infection and now being covered on insurance. I like this doctor that I am going to but I am worried. I do not know what to ask or how serious it is. In june 2004 my hearing was great, now he did a test again 2 weeks ago because i got such a bad infection while on vacation up north that i could not even open my jaw! He looked in there and said my drum looks suspicious, i did the ear test and have lost a little bit of hearing in that ear. He sent me for ct scans

and I went back to see him last week. He did not even put the scans on the light, he saw as soon as he pulled one sheet out and his face looked so serious! He said it is what I thought, C-toma, tumor. I guess i looked scared cuz he told me not to be afraid, but he wanted to get with the doctor in the group that has several years of experience with this. Well he did get with him and he personally called me at work and said that the other doc wants to see me before anything else is done. I am now awaiting an appt. I set up for this coming friday with that doc. He showed me a diagram in which it shows the canal etc... he said when i came in to see him he saw a white thing hanging down (possibly the tumor) one week he did not see the water that I told him I knew was in there cuz it was constantly popping and draining, then the next week he saw it and air bubbles in there. I also have a

malfunctioning eustachian tube. He has told me two years ago to hold my nose and blow to help with the tube not working properly. I am just worried, does that sound like good news or no? Do they and will they do surgery? I am worried. My ear rings all day long, loud throbbing in it at nite, have had a headache for about a week now, put cotton in my ear as not to get any more water in it while in the pool and when I pulled out the cotton it had blood on it. Every once in a while I get sharp shooting pain in my ear and constant dizziness, sometimes so bad I cannot stand up. I am learning more about this c-toma, just wanted some input from people that have gone through this and continue to go through this. I wish the best for everyone out there. ~~~~

Start your day with - make it your home page

August 30, 2005

sorry about the diagnosis but welcome to the group! yes, lots of

people with c-toma experience here. my boyfriend is looking at his 3rd

occurance right now, with surgery coming up soon-again. the only way to get

rid of the c-toma is to operate, so u will definetly have surgery to remove

it. sometimes they create a pocket to try to prevent further occurances,

sometimes they do reconstructive surgeries if they need to try to fix

hearing loss. Sometimes u get prosthetic or made hearing bones-did u see

that there are three of them connected to your eardrum? sometimes they get

destroyed and that is why u do not have great hearing. so, the new doc will

be able to tell the extent of the damage and what the plan is to have it

repaired. Very good luck to you! will keep our fingers crossed for good

news.

>From: " LISA " <nyn8tve@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: NEWLY DIAGNOSED

>Date: Mon, 29 Aug 2005 20:48:09 -0000

>

>Hello everyone, I am new to the group and new to all of this. I have

>had problems with my left ear since i blew the eardrum back in 1988.

>There have been infections and losts of dizziness. I did not go to

>doctors for years due to not having medical insurance. I went to an

>ear.nose and throat specialist 2 yrs ago due to another infection and

>now being covered on insurance. I like this doctor that I am going

>to but I am worried. I do not know what to ask or how serious it

>is. In june 2004 my hearing was great, now he did a test again 2

>weeks ago because i got such a bad infection while on vacation up

>north that i could not even open my jaw! He looked in there and said

>my drum looks suspicious, i did the ear test and have lost a little

>bit of hearing in that ear. He sent me for ct scans and I went back

>to see him last week. He did not even put the scans on the light, he

>saw as soon as he pulled one sheet out and his face looked so

>serious! He said it is what I thought, C-toma, tumor. I guess i

>looked scared cuz he told me not to be afraid, but he wanted to get

>with the doctor in the group that has several years of experience

>with this. Well he did get with him and he personally called me at

>work and said that the other doc wants to see me before anything else

>is done. I am now awaiting an appt. I set up for this coming friday

>with that doc. He showed me a diagram in which it shows the canal

>etc... he said when i came in to see him he saw a white thing hanging

>down (possibly the tumor) one week he did not see the water that I

>told him I knew was in there cuz it was constantly popping and

>draining, then the next week he saw it and air bubbles in there. I

>also have a malfunctioning eustachian tube. He has told me two years

>ago to hold my nose and blow to help with the tube not working

>properly. I am just worried, does that sound like good news or no?

>Do they and will they do surgery? I am worried. My ear rings all

>day long, loud throbbing in it at nite, have had a headache for about

>a week now, put cotton in my ear as not to get any more water in it

>while in the pool and when I pulled out the cotton it had blood on

>it. Every once in a while I get sharp shooting pain in my ear and

>constant dizziness, sometimes so bad I cannot stand up. I am

>learning more about this c-toma, just wanted some input from people

>that have gone through this and continue to go through this. I wish

>the best for everyone out there. ~~~~

>

August 30, 2005

,

I just found out in July that I have c-toma. I completely understand your feelings of worry, confusion and fright.(and I know everyone else on this loop has been there too.) For me, the first month after finding out was the hardest mentally. I am scheduled for surgery in 9 days!

Unfortunately, surgery is the only option with this monster. My c-toma has eroded the plate that separates the ear from the brain. The doctor is not sure what he will find during surgery. C-toma is slow growing but once it affects the brain--there can be serious complications. And I know all your symptoms all too well... My point in sharing this is...you're not alone.

I recommend you read the back messages; they are a wealth of information. There are also files and photos (if you have the stomach for them). I am so thankful for the openness of this group and the willingness of people to share their stories. I feel more knowledgeable going in to talk with my doctors and surgeon. Through the experiences of others, I kinda of know what to expect with my own surgery.

Right after my diagnosis, I went to a Christian book store to get myself some CDs to get me through the rough spots. I found this pedant called the Quiet Cross. I have been wearing it ever since. There were some words that came with it that spoke to me and I would like to share them with you:

Fear is useless; Faith is necessary; Love is everything

I know things seem really bleak right now, but it will get better!

Take care,

Dawn

(P.S.~ the upside of c-toma~ meeting people on this loop )LISA <nyn8tve@...> wrote:

Hello everyone, I am new to the group and new to all of this. I have had problems with my left ear since i blew the eardrum back in 1988. There have been infections and losts of dizziness. I did not go to doctors for years due to not having medical insurance. I went to an ear.nose and throat specialist 2 yrs ago due to another infection and now being covered on insurance. I like this doctor that I am going to but I am worried. I do not know what to ask or how serious it is. In june 2004 my hearing was great, now he did a test again 2 weeks ago because i got such a bad infection while on vacation up north that i could not even open my jaw! He looked in there and said my drum looks suspicious, i did the ear test and have lost a little bit of hearing in that ear. He sent me for ct scans

and I went back to see him last week. He did not even put the scans on the light, he saw as soon as he pulled one sheet out and his face looked so serious! He said it is what I thought, C-toma, tumor. I guess i looked scared cuz he told me not to be afraid, but he wanted to get with the doctor in the group that has several years of experience with this. Well he did get with him and he personally called me at work and said that the other doc wants to see me before anything else is done. I am now awaiting an appt. I set up for this coming friday with that doc. He showed me a diagram in which it shows the canal etc... he said when i came in to see him he saw a white thing hanging down (possibly the tumor) one week he did not see the water that I told him I knew was in there cuz it was constantly popping and draining, then the next week he saw it and air bubbles in there. I also have a

malfunctioning eustachian tube. He has told me two years ago to hold my nose and blow to help with the tube not working properly. I am just worried, does that sound like good news or no? Do they and will they do surgery? I am worried. My ear rings all day long, loud throbbing in it at nite, have had a headache for about a week now, put cotton in my ear as not to get any more water in it while in the pool and when I pulled out the cotton it had blood on it. Every once in a while I get sharp shooting pain in my ear and constant dizziness, sometimes so bad I cannot stand up. I am learning more about this c-toma, just wanted some input from people that have gone through this and continue to go through this. I wish the best for everyone out there. ~~~~Dawn Gardner

"Keep your face to the sunshine and you cannot see the shadow. "Helen Keller__________________________________________________

August 30, 2005

get a good dr. (teaching universities are good for this)......one who does these kinds of surgeries every week........and go for it.

might try to keep the ear dry too.

good luck

NEWLY DIAGNOSED

Hello everyone, I am new to the group and new to all of this. I have had problems with my left ear since i blew the eardrum back in 1988. There have been infections and losts of dizziness. I did not go to doctors for years due to not having medical insurance. I went to an ear.nose and throat specialist 2 yrs ago due to another infection and now being covered on insurance. I like this doctor that I am going to but I am worried. I do not know what to ask or how serious it is. In june 2004 my hearing was great, now he did a test again 2 weeks ago because i got such a bad infection while on vacation up north that i could not even open my jaw! He looked in there and said my drum looks suspicious, i did the ear test and have lost a little bit of hearing in that ear. He sent me for ct scans and I went back to see him last week. He did not even put the scans on the light, he saw as soon as he pulled one sheet out and his face looked so serious! He said it is what I thought, C-toma, tumor. I guess i looked scared cuz he told me not to be afraid, but he wanted to get with the doctor in the group that has several years of experience with this. Well he did get with him and he personally called me at work and said that the other doc wants to see me before anything else is done. I am now awaiting an appt. I set up for this coming friday with that doc. He showed me a diagram in which it shows the canal etc... he said when i came in to see him he saw a white thing hanging down (possibly the tumor) one week he did not see the water that I told him I knew was in there cuz it was constantly popping and draining, then the next week he saw it and air bubbles in there. I also have a malfunctioning eustachian tube. He has told me two years ago to hold my nose and blow to help with the tube not working properly. I am just worried, does that sound like good news or no? Do they and will they do surgery? I am worried. My ear rings all day long, loud throbbing in it at nite, have had a headache for about a week now, put cotton in my ear as not to get any more water in it while in the pool and when I pulled out the cotton it had blood on it. Every once in a while I get sharp shooting pain in my ear and constant dizziness, sometimes so bad I cannot stand up. I am learning more about this c-toma, just wanted some input from people that have gone through this and continue to go through this. I wish the best for everyone out there. ~~~~

August 30, 2005

Thank you all for your support and information, makes me feel a bit

better that I can chat wtih people on here about their experiences

and it helped me alot! I wish all of you the best and I will keep

you all informed as to what the doc tells me on friday. Thank you

all so much for your responses!

> get a good dr. (teaching universities are good for this)......one

who does these kinds of surgeries every week........and go for it.

> might try to keep the ear dry too.

> good luck

> NEWLY DIAGNOSED

>

> Hello everyone, I am new to the group and new to all of this. I

have

> had problems with my left ear since i blew the eardrum back in

1988.

> There have been infections and losts of dizziness. I did not go

to

> doctors for years due to not having medical insurance. I went to

an

> ear.nose and throat specialist 2 yrs ago due to another infection

and

> now being covered on insurance. I like this doctor that I am

going

> to but I am worried. I do not know what to ask or how serious it

> is. In june 2004 my hearing was great, now he did a test again 2

> weeks ago because i got such a bad infection while on vacation up

> north that i could not even open my jaw! He looked in there and

said

> my drum looks suspicious, i did the ear test and have lost a

little

> bit of hearing in that ear. He sent me for ct scans and I went

back

> to see him last week. He did not even put the scans on the

light, he

> saw as soon as he pulled one sheet out and his face looked so

> serious! He said it is what I thought, C-toma, tumor. I guess i

> looked scared cuz he told me not to be afraid, but he wanted to

get

> with the doctor in the group that has several years of experience

> with this. Well he did get with him and he personally called me

at

> work and said that the other doc wants to see me before anything

else

> is done. I am now awaiting an appt. I set up for this coming

friday

> with that doc. He showed me a diagram in which it shows the

canal

> etc... he said when i came in to see him he saw a white thing

hanging

> down (possibly the tumor) one week he did not see the water that

I

> told him I knew was in there cuz it was constantly popping and

> draining, then the next week he saw it and air bubbles in there.

I

> also have a malfunctioning eustachian tube. He has told me two

years

> ago to hold my nose and blow to help with the tube not working

> properly. I am just worried, does that sound like good news or

no?

> Do they and will they do surgery? I am worried. My ear rings

all

> day long, loud throbbing in it at nite, have had a headache for

about

> a week now, put cotton in my ear as not to get any more water in

it

> while in the pool and when I pulled out the cotton it had blood

on

> it. Every once in a while I get sharp shooting pain in my ear

and

> constant dizziness, sometimes so bad I cannot stand up. I am

> learning more about this c-toma, just wanted some input from

people

> that have gone through this and continue to go through this. I

wish

> the best for everyone out there. ~~~~

>

August 30, 2005

, Jim gave you some great advice, get a good doctor. Research

your area for surgeons who deal with the ear only, this is not a job

for a regular ENT. The ENT who found my C'toma was going to send me

to a guy within his 'group', I spent a day researching and located a

Doctor at Miami U who was fantastic.

Where are you located?

> Hello everyone, I am new to the group and new to all of this. I

have

> had problems with my left ear since i blew the eardrum back in

1988.

> There have been infections and losts of dizziness. I did not go to

> doctors for years due to not having medical insurance. I went to

an

> ear.nose and throat specialist 2 yrs ago due to another infection

and

> now being covered on insurance. I like this doctor that I am going

> to but I am worried. I do not know what to ask or how serious it

> is. In june 2004 my hearing was great, now he did a test again 2

> weeks ago because i got such a bad infection while on vacation up

> north that i could not even open my jaw! He looked in there and

said

> my drum looks suspicious, i did the ear test and have lost a little

> bit of hearing in that ear. He sent me for ct scans and I went

back

> to see him last week. He did not even put the scans on the light,

he

> saw as soon as he pulled one sheet out and his face looked so

> serious! He said it is what I thought, C-toma, tumor. I guess i

> looked scared cuz he told me not to be afraid, but he wanted to get

> with the doctor in the group that has several years of experience

> with this. Well he did get with him and he personally called me at

> work and said that the other doc wants to see me before anything

else

> is done. I am now awaiting an appt. I set up for this coming

friday

> with that doc. He showed me a diagram in which it shows the canal

> etc... he said when i came in to see him he saw a white thing

hanging

> down (possibly the tumor) one week he did not see the water that I

> told him I knew was in there cuz it was constantly popping and

> draining, then the next week he saw it and air bubbles in there. I

> also have a malfunctioning eustachian tube. He has told me two

years

> ago to hold my nose and blow to help with the tube not working

> properly. I am just worried, does that sound like good news or no?

> Do they and will they do surgery? I am worried. My ear rings all

> day long, loud throbbing in it at nite, have had a headache for

about

> a week now, put cotton in my ear as not to get any more water in it

> while in the pool and when I pulled out the cotton it had blood on

> it. Every once in a while I get sharp shooting pain in my ear and

> constant dizziness, sometimes so bad I cannot stand up. I am

> learning more about this c-toma, just wanted some input from people

> that have gone through this and continue to go through this. I

wish

> the best for everyone out there. ~~~~

August 30, 2005

heartily recommend dr. balkany at the university of miami ear institute at jackson memorial in fla.

heard good things about shands in gainesville too.

Re: NEWLY DIAGNOSED

, Jim gave you some great advice, get a good doctor. Research your area for surgeons who deal with the ear only, this is not a job for a regular ENT. The ENT who found my C'toma was going to send me to a guy within his 'group', I spent a day researching and located a Doctor at Miami U who was fantastic.Where are you located?> Hello everyone, I am new to the group and new to all of this. I have > had problems with my left ear since i blew the eardrum back in 1988. > There have been infections and losts of dizziness. I did not go to > doctors for years due to not having medical insurance. I went to an > ear.nose and throat specialist 2 yrs ago due to another infection and > now being covered on insurance. I like this doctor that I am going > to but I am worried. I do not know what to ask or how serious it > is. In june 2004 my hearing was great, now he did a test again 2 > weeks ago because i got such a bad infection while on vacation up > north that i could not even open my jaw! He looked in there and said > my drum looks suspicious, i did the ear test and have lost a little > bit of hearing in that ear. He sent me for ct scans and I went back > to see him last week. He did not even put the scans on the light, he > saw as soon as he pulled one sheet out and his face looked so > serious! He said it is what I thought, C-toma, tumor. I guess i > looked scared cuz he told me not to be afraid, but he wanted to get > with the doctor in the group that has several years of experience > with this. Well he did get with him and he personally called me at > work and said that the other doc wants to see me before anything else > is done. I am now awaiting an appt. I set up for this coming friday > with that doc. He showed me a diagram in which it shows the canal > etc... he said when i came in to see him he saw a white thing hanging > down (possibly the tumor) one week he did not see the water that I > told him I knew was in there cuz it was constantly popping and > draining, then the next week he saw it and air bubbles in there. I > also have a malfunctioning eustachian tube. He has told me two years > ago to hold my nose and blow to help with the tube not working > properly. I am just worried, does that sound like good news or no? > Do they and will they do surgery? I am worried. My ear rings all > day long, loud throbbing in it at nite, have had a headache for about > a week now, put cotton in my ear as not to get any more water in it > while in the pool and when I pulled out the cotton it had blood on > it. Every once in a while I get sharp shooting pain in my ear and > constant dizziness, sometimes so bad I cannot stand up. I am > learning more about this c-toma, just wanted some input from people > that have gone through this and continue to go through this. I wish > the best for everyone out there. ~~~~

August 30, 2005

Jim, Doctor Balkany was my Doctor as well. He's a wonderful man and

a very skilled surgeon. I'm in the middle of moving and now dealing

with a Doctor in ville that Dr. B sent me onto. He also

reccomended a Dr.Antonelli at Shands.

> heartily recommend dr. balkany at the university of miami ear

institute at jackson memorial in fla.

> heard good things about shands in gainesville too.

>

> Re: NEWLY DIAGNOSED

>

> , Jim gave you some great advice, get a good doctor.

Research

> your area for surgeons who deal with the ear only, this is not a

job

> for a regular ENT. The ENT who found my C'toma was going to send

me

> to a guy within his 'group', I spent a day researching and

located a

> Doctor at Miami U who was fantastic.

> Where are you located?

> > Hello everyone, I am new to the group and new to all of this.

I

> have

> > had problems with my left ear since i blew the eardrum back in

> 1988.

> > There have been infections and losts of dizziness. I did not

go to

> > doctors for years due to not having medical insurance. I went

to

> an

> > ear.nose and throat specialist 2 yrs ago due to another

infection

> and

> > now being covered on insurance. I like this doctor that I am

going

> > to but I am worried. I do not know what to ask or how serious

it

> > is. In june 2004 my hearing was great, now he did a test again

2

> > weeks ago because i got such a bad infection while on vacation

up

> > north that i could not even open my jaw! He looked in there

and

> said

> > my drum looks suspicious, i did the ear test and have lost a

little

> > bit of hearing in that ear. He sent me for ct scans and I went

> back

> > to see him last week. He did not even put the scans on the

light,

> he

> > saw as soon as he pulled one sheet out and his face looked so

> > serious! He said it is what I thought, C-toma, tumor. I guess

i

> > looked scared cuz he told me not to be afraid, but he wanted to

get

> > with the doctor in the group that has several years of

experience

> > with this. Well he did get with him and he personally called

me at

> > work and said that the other doc wants to see me before

anything

> else

> > is done. I am now awaiting an appt. I set up for this coming

> friday

> > with that doc. He showed me a diagram in which it shows the

canal

> > etc... he said when i came in to see him he saw a white thing

> hanging

> > down (possibly the tumor) one week he did not see the water

that I

> > told him I knew was in there cuz it was constantly popping and

> > draining, then the next week he saw it and air bubbles in

there. I

> > also have a malfunctioning eustachian tube. He has told me two

> years

> > ago to hold my nose and blow to help with the tube not working

> > properly. I am just worried, does that sound like good news or

no?

> > Do they and will they do surgery? I am worried. My ear rings

all

> > day long, loud throbbing in it at nite, have had a headache for

> about

> > a week now, put cotton in my ear as not to get any more water

in it

> > while in the pool and when I pulled out the cotton it had blood

on

> > it. Every once in a while I get sharp shooting pain in my ear

and

> > constant dizziness, sometimes so bad I cannot stand up. I am

> > learning more about this c-toma, just wanted some input from

people

> > that have gone through this and continue to go through this. I

> wish

> > the best for everyone out there. ~~~~

>

August 30, 2005

I am located in Orlando, Florida. I go to the Ear,

Nose, Throat and Plastic Surgery Associates here.

They have 3 offices in the area and have been around

since the 60's if not before. The doctor I go to is

just an ent, the guy in the group is: Otology,

Neurology and Skull Base Surgeon. Is this good enough

or no? They seem to know what they are doing everytime

I go in. Thank you for all your help.

--- alli_d_99 <alli_d_99@...> wrote:

> Jim, Doctor Balkany was my Doctor as well. He's a

> wonderful man and

> a very skilled surgeon. I'm in the middle of moving

> and now dealing

> with a Doctor in ville that Dr. B sent me

> onto. He also

> reccomended a Dr.Antonelli at Shands.

> > heartily recommend dr. balkany at the university

> of miami ear

> institute at jackson memorial in fla.

> > heard good things about shands in gainesville too.

> >

> > Re: NEWLY DIAGNOSED

> >

> > , Jim gave you some great advice, get a good

> doctor.

> Research

> > your area for surgeons who deal with the ear

> only, this is not a

> job

> > for a regular ENT. The ENT who found my C'toma

> was going to send

> me

> > to a guy within his 'group', I spent a day

> researching and

> located a

> > Doctor at Miami U who was fantastic.

> > Where are you located?

> > > Hello everyone, I am new to the group and new

> to all of this.

> I

> > have

> > > had problems with my left ear since i blew the

> eardrum back in

> > 1988.

> > > There have been infections and losts of

> dizziness. I did not

> go to

> > > doctors for years due to not having medical

> insurance. I went

> to

> > an

> > > ear.nose and throat specialist 2 yrs ago due

> to another

> infection

> > and

> > > now being covered on insurance. I like this

> doctor that I am

> going

> > > to but I am worried. I do not know what to

> ask or how serious

> it

> > > is. In june 2004 my hearing was great, now he

> did a test again

> 2

> > > weeks ago because i got such a bad infection

> while on vacation

> up

> > > north that i could not even open my jaw! He

> looked in there

> and

> > said

> > > my drum looks suspicious, i did the ear test

> and have lost a

> little

> > > bit of hearing in that ear. He sent me for ct

> scans and I went

> > back

> > > to see him last week. He did not even put the

> scans on the

> light,

> > he

> > > saw as soon as he pulled one sheet out and his

> face looked so

> > > serious! He said it is what I thought,

> C-toma, tumor. I guess

> i

> > > looked scared cuz he told me not to be afraid,

> but he wanted to

> get

> > > with the doctor in the group that has several

> years of

> experience

> > > with this. Well he did get with him and he

> personally called

> me at

> > > work and said that the other doc wants to see

> me before

> anything

> > else

> > > is done. I am now awaiting an appt. I set up

> for this coming

> > friday

> > > with that doc. He showed me a diagram in

> which it shows the

> canal

> > > etc... he said when i came in to see him he

> saw a white thing

> > hanging

> > > down (possibly the tumor) one week he did not

> see the water

> that I

> > > told him I knew was in there cuz it was

> constantly popping and

> > > draining, then the next week he saw it and air

> bubbles in

> there. I

> > > also have a malfunctioning eustachian tube.

> He has told me two

> > years

> > > ago to hold my nose and blow to help with the

> tube not working

> > > properly. I am just worried, does that sound

> like good news or

> no?

> > > Do they and will they do surgery? I am

> worried. My ear rings

> all

> > > day long, loud throbbing in it at nite, have

> had a headache for

> > about

> > > a week now, put cotton in my ear as not to get

> any more water

> in it

> > > while in the pool and when I pulled out the

> cotton it had blood

> on

> > > it. Every once in a while I get sharp

> shooting pain in my ear

> and

> > > constant dizziness, sometimes so bad I cannot

> stand up. I am

> > > learning more about this c-toma, just wanted

> some input from

> people

> > > that have gone through this and continue to go

> through this. I

> > wish

> > > the best for everyone out there. ~~~~

> >

August 30, 2005

Sorry that you had to find us, but also glad you did.

This can be a long process so keep your sprits up,

that a big part of the battle. One thing I would

suggest is that you get a 2nd opinion from a Otologist

if you not seeing one now. Otologist are ENT's that

only work on ears. Let the group know where you live

and someone should be able to point you in the right

direction...

tom hansen

--- LISA <nyn8tve@...> wrote:

> Hello everyone, I am new to the group and new to all

> of this. I have

> had problems with my left ear since i blew the

> eardrum back in 1988.

> There have been infections and losts of dizziness.

> I did not go to

> doctors for years due to not having medical

> insurance. I went to an

> ear.nose and throat specialist 2 yrs ago due to

> another infection and

> now being covered on insurance. I like this doctor

> that I am going

> to but I am worried. I do not know what to ask or

> how serious it

> is. In june 2004 my hearing was great, now he did a

> test again 2

> weeks ago because i got such a bad infection while

> on vacation up

> north that i could not even open my jaw! He looked

> in there and said

> my drum looks suspicious, i did the ear test and

> have lost a little

> bit of hearing in that ear. He sent me for ct scans

> and I went back

> to see him last week. He did not even put the scans

> on the light, he

> saw as soon as he pulled one sheet out and his face

> looked so

> serious! He said it is what I thought, C-toma,

> tumor. I guess i

> looked scared cuz he told me not to be afraid, but

> he wanted to get

> with the doctor in the group that has several years

> of experience

> with this. Well he did get with him and he

> personally called me at

> work and said that the other doc wants to see me

> before anything else

> is done. I am now awaiting an appt. I set up for

> this coming friday

> with that doc. He showed me a diagram in which it

> shows the canal

> etc... he said when i came in to see him he saw a

> white thing hanging

> down (possibly the tumor) one week he did not see

> the water that I

> told him I knew was in there cuz it was constantly

> popping and

> draining, then the next week he saw it and air

> bubbles in there. I

> also have a malfunctioning eustachian tube. He has

> told me two years

> ago to hold my nose and blow to help with the tube

> not working

> properly. I am just worried, does that sound like

> good news or no?

> Do they and will they do surgery? I am worried. My

> ear rings all

> day long, loud throbbing in it at nite, have had a

> headache for about

> a week now, put cotton in my ear as not to get any

> more water in it

> while in the pool and when I pulled out the cotton

> it had blood on

> it. Every once in a while I get sharp shooting pain

> in my ear and

> constant dizziness, sometimes so bad I cannot stand

> up. I am

> learning more about this c-toma, just wanted some

> input from people

> that have gone through this and continue to go

> through this. I wish

> the best for everyone out there. ~~~~

>

____________________________________________________

Start your day with - make it your home page

http://www./r/hs

August 30, 2005

Also, water is c-toma "grow food" so don't get any water in the ear, saturate a cotton ball with vaseline and none will get through. A bit messy but it really works, and a greasy spot in the hair is better than a returned c-toma!

ShirleyTom Hansen <pingmn123@...> wrote:

Sorry that you had to find us, but also glad you did. This can be a long process so keep your sprits up,that a big part of the battle. One thing I wouldsuggest is that you get a 2nd opinion from a Otologistif you not seeing one now. Otologist are ENT's thatonly work on ears. Let the group know where you liveand someone should be able to point you in the rightdirection...tom hansen --- LISA <nyn8tve@...> wrote:> Hello everyone, I am new to the group and new to all> of this. I have > had problems with my left ear since i blew the> eardrum back in 1988. > There have been infections and losts of dizziness. > I did not go to > doctors for years due to not having medical> insurance. I went to an > ear.nose

and throat specialist 2 yrs ago due to> another infection and > now being covered on insurance. I like this doctor> that I am going > to but I am worried. I do not know what to ask or> how serious it > is. In june 2004 my hearing was great, now he did a> test again 2 > weeks ago because i got such a bad infection while> on vacation up > north that i could not even open my jaw! He looked> in there and said > my drum looks suspicious, i did the ear test and> have lost a little > bit of hearing in that ear. He sent me for ct scans> and I went back > to see him last week. He did not even put the scans> on the light, he > saw as soon as he pulled one sheet out and his face> looked so > serious! He said it is what I thought, C-toma,> tumor. I guess i > looked scared cuz he told me not to be

afraid, but> he wanted to get > with the doctor in the group that has several years> of experience > with this. Well he did get with him and he> personally called me at > work and said that the other doc wants to see me> before anything else > is done. I am now awaiting an appt. I set up for> this coming friday > with that doc. He showed me a diagram in which it> shows the canal > etc... he said when i came in to see him he saw a> white thing hanging > down (possibly the tumor) one week he did not see> the water that I > told him I knew was in there cuz it was constantly> popping and > draining, then the next week he saw it and air> bubbles in there. I > also have a malfunctioning eustachian tube. He has> told me two years > ago to hold my nose and blow to help with the tube> not working

> properly. I am just worried, does that sound like> good news or no? > Do they and will they do surgery? I am worried. My> ear rings all > day long, loud throbbing in it at nite, have had a> headache for about > a week now, put cotton in my ear as not to get any> more water in it > while in the pool and when I pulled out the cotton> it had blood on > it. Every once in a while I get sharp shooting pain> in my ear and > constant dizziness, sometimes so bad I cannot stand> up. I am > learning more about this c-toma, just wanted some> input from people > that have gone through this and continue to go> through this. I wish > the best for everyone out there. ~~~~> > > > > >

____________________________________________________Start your day with - make it your home page http://www./r/hs

Start your day with - make it your home page

September 30, 2005

wow Gene, good luck with your upcoming surg. from your symptoms the

diagnosis seems right. for second opinions the only think i would ask is

maybe how many surg like this they do a year, complication rate, typical

recovery etc. i guess what i am trying to say is that u must have the surg,

but who does it is always up to u! good luck with your choice, sorry there

isn't another way to get rid of this thing!

>From: " Gene Schaeffer " <gmslbs@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: Newly Diagnosed

>Date: Thu, 29 Sep 2005 23:42:37 -0000

>

>I am a 58 year old female who has just been diagnosed with a right

>attic cholesteatoma. The diagnosis was somewhat of a surprise since

>I've never had ANY problems at all with ear infections. My

>college major, at one time, was Speech Path and Audiology. Also,

>both my father & mother-in-law were hearing impaired individuals who

>ultimately were gently persuaded to wear hearing aids, hence, my

>acute awareness regarding the ability or inability to hear.

>

>When the grandchildren visited last, the two year old came off the

>plane with a runny nose & a temperature. Of course, Grandma was

>always right behind him with a Kleenex. The day after everyone

>departed I came down with Whooping Cough. I was the sickest I've

>been since being a child. While there was nasal congestion, the

>primary affliction was the ugly cough. I recouperated very, very

>slowly…again, most uncharacteristic of me. Ultimately, I seemed

>to shake the thing. We babysat in April & after about 3 days the baby

>once again was running a temperature & kept pointing to his mouth &

>nose when asked what was wrong. The day after they left, I,again,

>became very ill with what seemed to be a head cold…but no ear

>pain.

>

>After a few days, I went to clean my left ear & found lots of blood,

>which was slightly disconcerting. I immediately saw my internist who

>examined the left ear & then asked why I wasn't writhing on the

>floor in pain since I had a raging case of Otitis Media with my

>tympanic membrane hemorrhaging. I told him it was because I

>wasn't in any pain! Nor have I had any kind of odorous discharge.

>He prescribed a course of antibiotics, which seemed to clear up

>everything. After about two weeks the same situation occurred with

>my right ear. He again prescribed antibiotics. The right ear seemed

>to get better. However, in August I began to notice a

> " fullness " in my right ear coupled with a reduction in

>hearing. From December on I also experienced an ongoing stiff right

>side of my head & neck with my head crackling when I turned to the

>right. My thought was that I simply had slept wrong & had a stiff

>neck as a result.

>

>At this point I went to see an ENT who indicated both ears had

>hemorrhaged. He then cleaned out the right ear & put me on another

>course of antibiotics. When the right ear did not improve & I felt

>numbness in the right side of my face & pain when I touched the ear, I

>returned to my ENT. He then ordered a CT scan that ultimately

>revealed the cholesteatoma, followed by a hearing test that revealed

>a moderate hearing loss in the right ear. At this point he passed me

>off to his associate who specializes in this type of surgery.

>According to my ENT, the c-toma is growing outward towards the canal

> & mastoid, but has done some damage to the malleus & tegman. Of

>course, he won't know the full extent of the damage until he gets

>into the ear, which he will do through the canal as opposed to

>through the mastoid. I am scheduled for surgery on October 27.

>

>At this point my ear still feels full, the right side of my head and

>neck feel numb, there is a constant " whooshing " noise in my

>ear, which seems to get worse at night, the base of my head crackles

>when I turn it-especially to the right, there is a moderate hearing

>loss, my sinuses are going crazy with constant drainage & I tire more

>easily than normal. I am considering a second opinion, although this

>ENTseems to know what he is talking about…even if he does look

>like he's only 13.

>

>I have spent hours reviewing most of the posts on this board. It is a

>fount of first-hand, practical information on an affliction about

>which I had never heard. Thank you all for sharing your stories. If

>anyone has any insights or suggestions, I would greatly appreciate

>them. My ENT is located in Phoenix.

>

>Gene

>

November 3, 2005

Yes, ASA desens- I wish I had done it 12 years ago. That and nasal

irrigation but not with a neti pot. That is just a big mess. Carol

Newly Diagnosed

> Would love to hear similarities in histories...Lost my sense of smell 5

> years ago. After 3 doctors, finally went to a University Taste and

> Smell Clinic.Did the cat scans result polyps...said if they were

> removed they often grow back..Prednisone temporarily brought back the

> sense of smell along with weight gain. Waited and suffered 5

> years,finally did the surgery this past April..everything was

> great,then took an aspirin and couldn't breath...downhill after that

> developed asthma, am on so many meds asupplements,worse than ever.

> Have been trying the raw food diet, neti pot (nasal wash)supplements

> for inflammation,acupuncture....hate this Samter's thing because it

> consumes my life. Does anybody have any suggestions for

> relief...Yoga? major exercise?My ENT said to try aspirin

> desensitization? Anybody try this with good results?

> Ollie

>

November 30, 2006

Hello ,

Wow, you didn't waste any in finding this group ... it took me a week of

research on the

net before I came across this group.

From the research I've done you sound like you could be one of the lucky ones

who get it

caught and treated before any major damage is done.

I'm someone who LOVES to listen to music. The lack of stereo and 3D sound is

hard to get

use to. I've always had some hearing loss in my ear but in the last year and a

half it's

gotten much worse. I'm having difficulty determining where sound is coming

from. I

assume this shouldn't be your case - unless it's age related hearing loss

(sorry, I had to

put that in there).

I've had persistant ear infections all my life. Since I had my son 13 years

ago, I've had

almost constant ear pain and pressure - increasing in severity only slightly

over the period

of 10/12 years until August of 2005 when everything came to a head. After a

year of

camping out in the doctors office (so it seemed), he finally sent me to an ENT

and a CT

showed the c-toma. I'm still waiting to hear back from the ENT. From what I've

been able

to determine from what I've been told so far and what the CT report said, it's

not good and

my hearing will mostly get worse after surgery. Between my love for music and

scuba

diving I've been at a loss with this whole thing - in a dream like state

wondering if I'll wake

up and it'll be over. At least I still have my art - my ear problems can't take

that away

from me (just put a temporary damper on it - dizziness and power tools don't

mix;)!

If you haven't had any prior symptoms or problems and your CT scan showed the

beginnings of a c-toma - it seems to me it could have been worse and you should

be

jamming again in no time. Your specialist is probably right. I wish you luck!

Colleen

>

> Hi everybody,I to have been diagnosed today with ctoma.Unlike most

> other people,I have never had any trouble with my left ear.Im 50yrs

> old never had infections or trouble of any kind except maybe some wax

> build up.I had my first infection in June and a ct scan showed the

> beginings of ctoma.My hearing is only slightly impared,which is why I

> got such a shock when told.Im for surgery in early Jan.Im a musician

> and im afraid I will loose my hearing,even though my specialest says

> this is unlikely.....................whats ahead for me folks?

>

November 30, 2006

If the c-toma hasn't destroyed your hearing bones yet, than your

hearing should be fine after the surgery. If the c-toma destroyed some

of your hearing bones, than you may get a prosthetic hearing bone. I

got my prosthesis about a year ago and now have what qualifies as

normal hearing.

The surgery isn't too bad. I always took 1 week off of work

afterward. I seldom needed the pain killers that the doctor gave me.

I usually used over-the-counter Tylonol. Stock up on lots of food that

doesn't require much chewing as it may be unconfortable to chew for a

while.

Missy