Re: Cholesteatom

[Guest guest]

Hello,

I don't want to scare you, but if you have been

diagnosed with cholesteatoma, especially 4 or 5 years

ago, you need to have surgery to get this taken care

of. I don't know if it is the cause of some of the

problems you are having, but it is possible. An

untreated cholesteatoma leads to brain abscess,

meningitis, and eventually death. The only known

treatment for cholesteatoma at this time is surgery.

Please read the articles in the bookmarks section and

also read the archived messages.

Please keep us posted. I am very concerned.

Michele

--- lagerbygg <helge_sverre_risan@...> wrote:

> Hi. Im new here, I am a man from Norway at the age

> of 29. You have to

> excuse my language because I dont know the words in

> English for many

> medical expressions.

>

> I have had problems with my ears since I was 6 years

> old. Or at least

> the doctors call it a " problem ear " . I have really

> not felt much bad

> in the ear. Every time I am at the doctor he vacums

> and cleans my

> ear. I had " those things they put through the

> eardrum to keep air to

> the inner ear " when i was a kid, and they usually

> fell out in a year

> or two. The doctor told me I had cholesteatoma for

> about 5-6 years

> ago. The doctor told me I got the worst ear walking

> around in Oslo

> (the capital of Norway).

> By a coincidence another ear-nose-throat specialist

> had a look at me,

> and she directed me to a ear-surgeon, I shall see

> him 26. june.

> For about 4 years ago I started to feel bad, not in

> the ear excactly,

> I feel weak, my head hurts, its like my face is kind

> a stiff. My

> forehead hurts and sometimes even between the eyes.

> I feel kinda sensitiv for light. Earlyer I never

> felt like i needed

> sunglasses, now I feel like I really neeed

> sunglasses.

> I think my ear-whisling is increasing thru the

> years, now it feels

> like someone had hit my head really hard. I feel

> like my head is hot

> and sometimes my outer-ears feels hot (like

> glowing).

> When I rearly feel well enough to do sports my sweat

> smells kinda

> weird nearly like a mix of ammonia and chlorine.

> I think I might be a little dizzy sometimes, but I

> am not really

> shure.

> I have been going in therapy to a psychologist for a

> while now

> thinking my problems might be psychic. I have even

> got prozac but non

> of this seems to help me. And my psychologist tells

> my he dont have

> any more to offer me.

> I have a great job, but I'm having problems working.

> I keep

> forgetting things and I feel worn out. I have been

> home from work for

> 1,5 months now to try to get some strenght back. But

> I still feel as

> bad as I never did before.

> I have been to the doctor and taken bloodsmples,

> variuos tests but ..

> nothing.

>

> Now I have started thinking my problems might be

> caused by my ear

> problems (cholestatom). Have anyone heard of similar

> problems ?

>

>

__________________________________________________

[Guest guest]

Hello

The problems you describe certainly sound like they are caused by cholesteatoma. I had many similar symptoms because I, like you, had cholesteatoma for many years before getting treatment. I'm sorry to tell you that, until you have surgery these problems would become a lot worse.

When the cholesteatoma grows it presses on the facial nerve (which runs through the ear). This can cause your face to become numb and then paralysed, your neck can become stiff and swollen and your teeth start to ache. The pressure also gives you severe headaches which may may make it hard to concentrate and lead to mental absences (as if you seem to lose consciousness for a moment).

The taste nerves also run through the ear. It is a disruption in the sense of taste that causes things to smell differently. I used to notice that water had a chemical smell and that food and drink had a metallic taste. Dizziness is often usually caused by the cholesteatoma pushing into the balance organ in the inner ear - the room spins round and it becomes very difficult to walk. In my case, nearly all of these symptoms disappeared immediately after the surgery. Balance and taste began to come back more slowly.

Everyone in this group will urge you to get treatment as soon as possible not merely to relieve any uncomfortable symptoms but because, as says, a cholesteatoma is serious and could lead to some kind of brain disease.

Please keep us up to date with your progress. Get well soon.

Phil

ps. couldn't work your name from your e-mail address

[Guest guest]

It's funny thou my grandfather was a doctor, with a spesiality within ears.

He inwented a lot of new technics for operating in the middle ear. Someone

told me ( many year since he passed away) he always operated thru the

earchannel newer thru scull. He wrote some of the books they still use in

medical school.

And my mother passed away 15 years ago because of long lasting treatment in

the ear. After time she got osteoperose-like problmes in the scullbones

because of many infections in the ear. All of this was treatable but after

all she got what they call streptocoks, a rear infection witch is very

angry. THis happends with 1 out of millions, not necceserily for people with

ear-truoble.

It's kind a strange thinking about if ahe have had the medical treatment we

have today she could have been treated doctors tell me. It shure a sign of

that medical treatment keeps moving and gets better every second.

And now it looks like it is my turn to have eartroubles. Im seeing the

specialist at 26. july. Do you think i should wait until then or give the

doctor a call so i might get in earlyer ?

Have anyone tried needle-like-acupuncture, chinese medical treatmen ?

I will try it next week, I will try anything to try to get better....or at

least feel better.........

>From: " psmorris " <psmorris@...>

>Reply-cholesteatoma

><cholesteatoma >

>Subject: Re: Cholesteatom

>Date: Sat, 1 Jun 2002 05:08:36 +0100

>

>Hello

>

>The problems you describe certainly sound like they are caused by

>cholesteatoma. I had many similar symptoms because I, like you, had

>cholesteatoma for many years before getting treatment. I'm sorry to tell

>you that, until you have surgery these problems would become a lot worse.

>

>When the cholesteatoma grows it presses on the facial nerve (which runs

>through the ear). This can cause your face to become numb and then

>paralysed, your neck can become stiff and swollen and your teeth start to

>ache. The pressure also gives you severe headaches which may may make it

>hard to concentrate and lead to mental absences (as if you seem to lose

>consciousness for a moment).

>

>The taste nerves also run through the ear. It is a disruption in the sense

>of taste that causes things to smell differently. I used to notice that

>water had a chemical smell and that food and drink had a metallic taste.

>Dizziness is often usually caused by the cholesteatoma pushing into the

>balance organ in the inner ear - the room spins round and it becomes very

>difficult to walk. In my case, nearly all of these symptoms disappeared

>immediately after the surgery. Balance and taste began to come back more

>slowly.

>

>Everyone in this group will urge you to get treatment as soon as possible

>not merely to relieve any uncomfortable symptoms but because, as

>says, a cholesteatoma is serious and could lead to some kind of brain

>disease.

>

>Please keep us up to date with your progress. Get well soon.

>

>Phil

>

>ps. couldn't work your name from your e-mail address

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp.

[Guest guest]

Hello,

If I remember correctly you were diagnosed three or

four years ago. That being the case, I would push for

and earlier appointment. Cholesteatoma is an

aggresive tumor. Although it is more aggressive in

children than in adults, my husband had cholesteatoma

show up in his good ear in less than 6 weeks.

The sooner you are able to get into surgery, the

greater your chances of still being able to hear out

of the affected ear. There are 3 priorities in

cholesteatoma removal: 1) remove the c-toma and

create a clean, dry environment, 2) prevent damage to

the facial nerve, and 3) hearing. I may have 2 and 3

reversed, but in any event, hearing is not a priority

when you have this disease.

By all means, insist on an earlier appointment.

Please keep us posted.

Michele

--- Helge Sverre Risan

<helge_sverre_risan@...> wrote:

> It's funny thou my grandfather was a doctor, with a

> spesiality within ears.

> He inwented a lot of new technics for operating in

> the middle ear. Someone

> told me ( many year since he passed away) he always

> operated thru the

> earchannel newer thru scull. He wrote some of the

> books they still use in

> medical school.

>

> And my mother passed away 15 years ago because of

> long lasting treatment in

> the ear. After time she got osteoperose-like

> problmes in the scullbones

> because of many infections in the ear. All of this

> was treatable but after

> all she got what they call streptocoks, a rear

> infection witch is very

> angry. THis happends with 1 out of millions, not

> necceserily for people with

> ear-truoble.

> It's kind a strange thinking about if ahe have had

> the medical treatment we

> have today she could have been treated doctors tell

> me. It shure a sign of

> that medical treatment keeps moving and gets better

> every second.

>

> And now it looks like it is my turn to have

> eartroubles. Im seeing the

> specialist at 26. july. Do you think i should wait

> until then or give the

> doctor a call so i might get in earlyer ?

>

> Have anyone tried needle-like-acupuncture, chinese

> medical treatmen ?

> I will try it next week, I will try anything to try

> to get better....or at

> least feel better.........

>

> >From: " psmorris " <psmorris@...>

> >Reply-cholesteatoma

> ><cholesteatoma >

> >Subject: Re: Cholesteatom

> >Date: Sat, 1 Jun 2002 05:08:36 +0100

> >

> >Hello

> >

> >The problems you describe certainly sound like they

> are caused by

> >cholesteatoma. I had many similar symptoms because

> I, like you, had

> >cholesteatoma for many years before getting

> treatment. I'm sorry to tell

> >you that, until you have surgery these problems

> would become a lot worse.

> >

> >When the cholesteatoma grows it presses on the

> facial nerve (which runs

> >through the ear). This can cause your face to

> become numb and then

> >paralysed, your neck can become stiff and swollen

> and your teeth start to

> >ache. The pressure also gives you severe headaches

> which may may make it

> >hard to concentrate and lead to mental absences (as

> if you seem to lose

> >consciousness for a moment).

> >

> >The taste nerves also run through the ear. It is a

> disruption in the sense

> >of taste that causes things to smell differently. I

> used to notice that

> >water had a chemical smell and that food and drink

> had a metallic taste.

> >Dizziness is often usually caused by the

> cholesteatoma pushing into the

> >balance organ in the inner ear - the room spins

> round and it becomes very

> >difficult to walk. In my case, nearly all of these

> symptoms disappeared

> >immediately after the surgery. Balance and taste

> began to come back more

> >slowly.

> >

> >Everyone in this group will urge you to get

> treatment as soon as possible

> >not merely to relieve any uncomfortable symptoms

> but because, as

> >says, a cholesteatoma is serious and could lead to

> some kind of brain

> >disease.

> >

> >Please keep us up to date with your progress. Get

> well soon.

> >

> >Phil

> >

> >ps. couldn't work your name from your e-mail

> address

>

>

>

_________________________________________________________________

> Get your FREE download of MSN Explorer at

> http://explorer.msn.com/intl.asp.

>

>

__________________________________________________

[Guest guest]

get a cat scan and to an ear surgeon right away, dont wait til June 26. Sounds like you have a c-toma or maybe something else. But urgency is the name of the game. My c-toma was so advanced I couldnt even stand up. And I had not had ear problems. So it can happen to anyone. I could very well be your problem.

Cholesteatom

Hi. Im new here, I am a man from Norway at the age of 29. You have to excuse my language because I dont know the words in English for many medical expressions.I have had problems with my ears since I was 6 years old. Or at least the doctors call it a "problem ear". I have really not felt much bad in the ear. Every time I am at the doctor he vacums and cleans my ear. I had "those things they put through the eardrum to keep air to the inner ear" when i was a kid, and they usually fell out in a year or two. The doctor told me I had cholesteatoma for about 5-6 years ago. The doctor told me I got the worst ear walking around in Oslo (the capital of Norway).By a coincidence another ear-nose-throat specialist had a look at me, and she directed me to a ear-surgeon, I shall see him 26. june.For about 4 years ago I started to feel bad, not in the ear excactly, I feel weak, my head hurts, its like my face is kind a stiff. My forehead hurts and sometimes even between the eyes.I feel kinda sensitiv for light. Earlyer I never felt like i needed sunglasses, now I feel like I really neeed sunglasses.I think my ear-whisling is increasing thru the years, now it feels like someone had hit my head really hard. I feel like my head is hot and sometimes my outer-ears feels hot (like glowing).When I rearly feel well enough to do sports my sweat smells kinda weird nearly like a mix of ammonia and chlorine.I think I might be a little dizzy sometimes, but I am not really shure.I have been going in therapy to a psychologist for a while now thinking my problems might be psychic. I have even got prozac but non of this seems to help me. And my psychologist tells my he dont have any more to offer me.I have a great job, but I'm having problems working. I keep forgetting things and I feel worn out. I have been home from work for 1,5 months now to try to get some strenght back. But I still feel as bad as I never did before.I have been to the doctor and taken bloodsmples, variuos tests but .. nothing.Now I have started thinking my problems might be caused by my ear problems (cholestatom). Have anyone heard of similar problems ?

[Guest guest]

Donna, in reading your post, I was interested in that you had no ear problems. That sounds like me, except I did have hearing loss. But that was my only symptom that I was aware of. I had been having occasion waves of dizzyness when lying on my back, but those would pass quickly. I never even mentioned this to the doctor. It was only when I had a tympanotomy done in Feb, was the c-toma diagnosed. It had already cause a lot of damage, but I was still not suffering the ill effects it would eventually have brought me.

Lynn

Cholesteatom

Hi. Im new here, I am a man from Norway at the age of 29. You have to excuse my language because I dont know the words in English for many medical expressions.I have had problems with my ears since I was 6 years old. Or at least the doctors call it a "problem ear". I have really not felt much bad in the ear. Every time I am at the doctor he vacums and cleans my ear. I had "those things they put through the eardrum to keep air to the inner ear" when i was a kid, and they usually fell out in a year or two. The doctor told me I had cholesteatoma for about 5-6 years ago. The doctor told me I got the worst ear walking around in Oslo (the capital of Norway).By a coincidence another ear-nose-throat specialist had a look at me, and she directed me to a ear-surgeon, I shall see him 26. june.For about 4 years ago I started to feel bad, not in the ear excactly, I feel weak, my head hurts, its like my face is kind a stiff. My forehead hurts and sometimes even between the eyes.I feel kinda sensitiv for light. Earlyer I never felt like i needed sunglasses, now I feel like I really neeed sunglasses.I think my ear-whisling is increasing thru the years, now it feels like someone had hit my head really hard. I feel like my head is hot and sometimes my outer-ears feels hot (like glowing).When I rearly feel well enough to do sports my sweat smells kinda weird nearly like a mix of ammonia and chlorine.I think I might be a little dizzy sometimes, but I am not really shure.I have been going in therapy to a psychologist for a while now thinking my problems might be psychic. I have even got prozac but non of this seems to help me. And my psychologist tells my he dont have any more to offer me.I have a great job, but I'm having problems working. I keep forgetting things and I feel worn out. I have been home from work for 1,5 months now to try to get some strenght back. But I still feel as bad as I never did before.I have been to the doctor and taken bloodsmples, variuos tests but .. nothing.Now I have started thinking my problems might be caused by my ear problems (cholestatom). Have anyone heard of similar problems ?