Re: ctoma in ear canal (outside ear drum)?

January 30, 2007

My neighbors are a couple of " pot heads " pardon the expression. I can use that

term, as I

use to be one, so if someone was offended by it, I didn't mean anything by it.

There are

many Canadians who use it for the same reasons you mentioned.

I did try some a while back to see if it helped. It did and it didn't. Because

I'm a

" reformed " pothead, it didn't sit well with me at all. The dizziness seemed to

get worse -

but I was definately feeling no pain ;~) But I didn't like the over all

sensation any more.

Not like I use to.

I'm curious to know if you get any responses regarding ear canal c-toma. I'm

wondering

about your answer to C. I've been noticing a lot of swelling in my ear. It's

to the point

where I can barely fit a Q-tip in my ear to clean any drainage that gets caked

up in the

opening. Prior to getting the c-toma diagnosis, I would use a Q-tip to clean my

ears after

showers. For a while there (in August of 2005), I would pull white balls of waxy

like stuff

out of my ear and then my ear would bleed. That only happened for a couple

months.

Then I had a MAJOR ear infection (in October 2005) where I really thought I

wasn't going to

make it through the night. Since that ear infection, I haven't had any waxy

white balls

come out of my ear or bleeding, but instead, I've had that nasty inflating

balloon feeling

inside my head ever since. It was a year later (October 2006) when I finally

was sent to an

ENT and a CT was done - and the c-toma was found.

For that year, the GP said he could see 'something' in behind my ear drum but

wrote it off

as infection and sent me home with a prescription. It was upon my request that

he finally

sent me to an ENT. Even at that point, he wasn't sure if that was necessary.

Because I like

scuba diving and couldn't go because of constant ear problems, I urged him that

I wanted

it fixed once and for all. As it turns out, I may have to trade my mask and

snorkel for a

diving helment - gee, diving is going to be so much " fun " with that thing on my

head ...

I know what you mean about a scared eardrum. Every time a GP looked in my ear

I'd get

the speech " you've got scaring, have you had many ear infections? " It got to

the point

before they'd get the ear thingy close to my ear, I'd say " before you ask, yes,

I've had many

ear infections " .

According to the ENT that's doing my surgery, the mastoid, e-tube, and middle

ear area is

all under developed - meaning I was born with a condition that made me a

candidate for

chronic ear infections, leading to this c-toma. I was also born with spina

bifida in my

lower back, and I have a third kidney ... I resently asked my mom what she was

smoking

when she was pregnant with me. Even though we had a good laugh about that, I

sure feel

somebody screwed up at the factory and I'm paying for it now! I can't help but

wonder

what they will find next.

Anyhow, thanks for 'listening'/reading. It's really good to be able to chat

with others who

know exactly how I'm feeling and what I'm going through.

Colleen

>

> hello again!

>

> colleen, i am so sorry about your situation! unfortunately, i don't

> have any advice b/c i'm in much the same situation---pre-op and

> freaking out. but my thoughts are with you! and i hope that you're not

> drinking too much. maybe i shouldn't even say this, but have you

> thought about smoking pot? i have digestive problems and it makes a

> world of difference, and it's often used in the US by people with

> chronic illness who regularly experience pain and nausea. just a

> thought. i'm not some druggie or something but it works for some of my

> friends who are chronically ill, so i thought i might mention it.

>

> i was wondering if anyone's c-toma could be seen on the outside side of

> the ear drum, in the ear canal. my GP doesn't see anything in the

> middle ear, only a 'growth' in the ear canal, but obviously my ENT

> thinks that given my symptoms/history (and probably what he could see

> with that huge microscope of his) i have a c-toma. the complicating

> factor is that my ear drum is pretty scarred and nasty looking b/c of

> the tubes and ear infections. i've tried googling 'ear canal c-toma'

> and it seems that either a. this is super rare; b. i have something

> other than c-toma; c. the ctoma is very large and has 'eaten' through

> my ear canal; or d. the ENT is over-reacting, as my GP seems to think.

> naturally i would prefer option d, as all of the others seem rather

> disheartening.

>

> if anyone has heard of this or experienced this, i would very much

> welcome your thoughts! my CT is on thursday, just about a day away, so

> i'm a little stressed out. but hangin in there.

>

> take care y'all!

>

> peace

> cassie

>

January 31, 2007

Cassie,

Yes, there is such a thing as an external ear canal cholesteatoma,

and yes, it is rare. I have one, and I think only maybe three other

people in this groups have one.

Mine wasn't discovered until I had an ear canal infection that

wouldn't go away. After seeing me a few times, my ENT saw what he

thought was a cyst, but it was hard to see and he wasn't sure.

Because my infection had been going on for a while, he ordered a CT

scan and referred me to an otologist, who couldn't get me in for six

weeks. I continued seeing the ENT in the meantime. While seeing him,

he frequently pulled big white pieces of tissue (which I later

learned was keratin) out of my ear, and then the lining of the " cyst "

came out, as well. After seeing the otologist, it appears the " cyst "

was just the top of the ctoma (or maybe where the ctoma was bulging

into the ear canal, I'm not sure), where it was eating into my ear

canal and mastoid.

I had surgery on both my ears in high school (20 years ago!) for

punctured ear drums. The otologist thinks a piece of tissue was

inadvertantly left behind when they did the surgery, and that was

what caused the ctoma, which has likely been slowly developing ever

since. I've read that this can be a cause of an ear canal ctoma, but

there are other causes as well.

Bottom line, it is possible, and if your ENT saw a " growth, " I would

see an otologist about it. The " good " news is, canal ctomas are less

of a threat to your hearing than other ctomas, because of where they

are positioned.

Get it checked out by an otologist. If that's what it is, better to

treat it before it causes major symptoms.

>

> hello again!

>

> colleen, i am so sorry about your situation! unfortunately, i don't

> have any advice b/c i'm in much the same situation---pre-op and

> freaking out. but my thoughts are with you! and i hope that you're

not

> drinking too much. maybe i shouldn't even say this, but have you

> thought about smoking pot? i have digestive problems and it makes a

> world of difference, and it's often used in the US by people with

> chronic illness who regularly experience pain and nausea. just a

> thought. i'm not some druggie or something but it works for some of

my

> friends who are chronically ill, so i thought i might mention it.

>

> i was wondering if anyone's c-toma could be seen on the outside

side of

> the ear drum, in the ear canal. my GP doesn't see anything in the

> middle ear, only a 'growth' in the ear canal, but obviously my ENT

> thinks that given my symptoms/history (and probably what he could

see

> with that huge microscope of his) i have a c-toma. the complicating

> factor is that my ear drum is pretty scarred and nasty looking b/c

of

> the tubes and ear infections. i've tried googling 'ear canal c-

toma'

> and it seems that either a. this is super rare; b. i have something

> other than c-toma; c. the ctoma is very large and has 'eaten'

through

> my ear canal; or d. the ENT is over-reacting, as my GP seems to

think.

> naturally i would prefer option d, as all of the others seem rather

> disheartening.

>

> if anyone has heard of this or experienced this, i would very much

> welcome your thoughts! my CT is on thursday, just about a day away,

so

> i'm a little stressed out. but hangin in there.

>

> take care y'all!

>

> peace

> cassie

>

January 31, 2007

i was wondering if anyone's c-toma could be seen on the outside side of the ear drum, in the ear canal. my GP doesn't see anything in the middle ear, only a 'growth' in the ear canal, but obviously my ENT thinks that given my symptoms/history (and probably what he could see with that huge microscope of his) i have a c-toma. the complicating factor is that my ear drum is pretty scarred and nasty looking b/c of the tubes and ear infections. i've tried googling 'ear canal c-toma' and it seems that either a. this is super rare; b. i have something other than c-toma; c. the ctoma is very large and has 'eaten' through my ear canal; or d. the ENT is over-reacting, as my GP seems to think. naturally i would prefer option d, as all of the others seem rather disheartening.

Hi Cassie

Even ear doctors rarely encounter canal ctoma; I'm not so sure that I would trust a GP. I used to attend ENT regualrly but stopped in the early 90s. I'd had previous surgeries including one for middle ear ctoma. Over the next few years I developed a foul smelling drainage and more or less permanent earache. I used to treat it by using a spray which I got from the GP. One day a nurse decided to look in my ear and found a strange white growth there. The GP came in and decided it was probably fungus but he took a swab and sent it to a lab. It showed up as being made of skin. The GP didn't think that was very significant and he more or less persuaded that I'd be wasting my time going back to ENT.

A few years on and things suddenly got quite a bit worse. I developed a facial tic, I was having bouts of vertigo, loss of taste, I was having severe headaches and many other problems too.

Anyway I finally went back to ENT and was diagnosed with bilateral canal ctoma and left-sided middle ear ctoma. I told the otologist what the GP had said to me about the "white skin growth" some time earlier. His was response was that the GP "would have no idea what he was looking at".

Phil

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February 1, 2007

I agree with Phil all of the way!

My GP treated me for ear and sinus infections for many years before I was diagnosed with Ctoma. I went and saw an ENT in the beginning of 2003 and was finally diagnosed. He then sent me to an Otologist. All of the years of headaches, pain, dizziness, vertigo and finally facial nerve problems.

My own GP that is fantastic for other things but will not mess with my ears and is not ashamed to admit that he was not trained to deal with it. Most GP's are not and some ENT's are not fully trained, it all seems to depend on where you are.

I just had my 7th surgery yesterday on my left ear. I wonder if I would have been at this stage if I had been diagnosed years earlier.

For the record my surgery went fine and believe it or not feel better today than I did last week. Except for the normal surgery stuff, I do not have the horrible pain, etc. that I had before.

For your own sake see the best Doctor that you can. Ctoma is nothing to mess with. It is a monster and destroys everything in it's path.

I am not trying to scare you, I am trying to make you understand that Ctoma is not anything to fool around with and the quicker you can get removed, the less damage and hearing loss it can cause. Don't wait!!!