Re: strange ear symptom post c-toma...help!

June 7, 2002

hi debbie.

I think you should go to anyone you can pretty darn soon. if you can't

get to the ENT right away, call your primary doctor and get in with them.

if they can't take you, call your insurance company (assuming you have it,

and need approval of stuff, etc.) and see if you can go to an emergency

room. that's only if you can't get in within a day.

i can't make a diagnosis. but sounds like an ear infection or mastoiditis

or c-toma.

i had a nasty one a few months ago and couldn't get an appointment with my

regular doctor, so i had her give me a referral and went to my ENT and

that's when they told me it looked like my c-toma came back. what a very

unwelcomed visitor.

but don't put off treatment any longer. go go go.

get some heavy duty antibiotics, some drops, and keep that 10 day

appointment with your ENT to see how it is.

__________________________________________________

June 7, 2002

Hi, Debbie.

Welcome to the group!

I would certainly see a doctor about the drainage. Since the

drainage has a foul odor, it could indicate a recurrence. I would

make an appointment soon.

Please keep us posted!

Take care, Terri

> Hello, I'm so happy to find this group! I had a c-toma removed

when

> I was 10, 24 years age. Before now I have had no problems, unless

> my ear got wet. I have a complete loss of hearing on that side as

> all of my ossicles disintegrated. Recently, however I had an ear

> infection with drainage which was disgustingly foul smelling. This

> has never happened before. That was about a month ago and now I

> have a very painful ear. Not all the time, but especially when

> touched on the outside. It hurts to lay on that side, to put on

> tight fitting shirts that may touch it and I am constantly on guard

> with my little kids because I don't want to be accidentally touched

> there. I have a lot of ear pressure. What is weird to me and

> unusual is the amount of pain I have when I touch the outside.

> Could this be a recurrence? I can't get into the ENT for 10 more

> days. Any advice would be greatly appreciated. Debbie

June 7, 2002

Deborah....sounds like a massive infection, and maybe a c-toma.

Have you told them the amount of pain you are in.....that just doesnt seem right, but the way the health care system is today....one wonders. I dont know about the others, but I would be they all suggest you get somewhere fast to fight that infection.

strange ear symptom post c-toma...help!

Hello, I'm so happy to find this group! I had a c-toma removed when I was 10, 24 years age. Before now I have had no problems, unless my ear got wet. I have a complete loss of hearing on that side as all of my ossicles disintegrated. Recently, however I had an ear infection with drainage which was disgustingly foul smelling. This has never happened before. That was about a month ago and now I have a very painful ear. Not all the time, but especially when touched on the outside. It hurts to lay on that side, to put on tight fitting shirts that may touch it and I am constantly on guard with my little kids because I don't want to be accidentally touched there. I have a lot of ear pressure. What is weird to me and unusual is the amount of pain I have when I touch the outside. Could this be a recurrence? I can't get into the ENT for 10 more days. Any advice would be greatly appreciated. Debbie

June 7, 2002

, when did you have a c-toma in the first place? How many

years before it came back? Did you have a nasty ear infection first

and then they noticed this recurrance? I am just so surprised that

after all these years I am now having problems. I have 4 children

under 8 and I don't have the time or energy for any of this. Did

you have surgery? I hope you are doing well now, definitely an

unwelcome visitor....take care. Debbie

June 7, 2002

I got a really bad ear infection in late december 98 (i was bleaching my

hair and washing it out in a sink, took a wrong turn and got a shot of

water directly in my ear) it was infected bad for a few months after

that. i went to the school nurse practioner (i was a junior in

college)and got some antibiotics. went to my (old) doctor when i got back

at break. he told me i didn't need to see an ent; they would just give me

antibiotics. so i left him and went to a new doctor who quickly noticed

the " unusual architecture " of my ear and got me a good ENT who diagnosed

it sometime in february or march, and i had surgery the following july.

everything was ok. i had it checked last year, but that was with an ENT

who didn't use a microscopic otoscope. that's a free standing one, not

the hand held one. they need the big arm otoscope that has microscope

like attachments to really check out the ctoma. but anyhow. i got

another ear infection earlier this year, around late march. it was luck

that my regular doctor couldn't see me (those rude people answering the

phones are sometimes a good thing), cause i went to the ent instead and he

saw it. also luckily he retired, (since i didn't trust him at all). and

my boss's mother, who works for a physician referral service, set me up

with a great doctor here in washington, dc. (he went to yale).

it's a small cholesteatoma and technically an external ear cholesteatoma

(they can actually show up in other places like sinuses, etc, although

extremely rare). and since i have a perforation and have had one for many

years, the thing won't get sucked into my middle ear. so i am taking it

slow in terms of treatment. i am going back this month so he can clean

out the pocket (my cholesteatmoa formed when the skin graft from my last

operation had curled up and created a pocket for the ctoma to begin to

form.) and will get a cat scan in another few months to monitor it. i am

reluctant to have surgery, since i have already had two unrelated ear

operations (where they tried prosthetics and to patch the perforation) and

the one for ctoma, and i don't care about my hearing. it may be a little

risky, but i am aware of my body and am active in patrolling my health, so

i am not worried.

but that's not to say surgery is out of the question, and it depends on

what shows up. of course, you haven't been diagnosed. so let's not buy

post-op ice-cream yet! surgery is a pain, but i recall i was up and about

a few days afterwords. probably shouldn't have been out in the garden

that much...

but you need to see the doctor and tell him some of your worries. also,

be sure to check out the links included here.

and ask him what they did when you had the surgery when you were 10. ask

him to tell you what they did, write it down, and then let us know and we

can answer some of your questions.

ok.

gotta go...i have tickets for shakespeare.,

good luck!

ps. i just turned 24, was 21 when i had the last op.

__________________________________________________

June 7, 2002

Hello Debbie,

Welcome to the group. I really can't explain why your

ear is painful to the touch, but it does sound like

there is a possibility that c-toma has returned. Do

you know what types of surgery you had before? Can

your doc get you in any earlier and is he an ENT?

Maybe claim emergency? You shouldn't have to be in

pain for the next 10 days.

Please keep us posted. We do care. Once again,

welcome to the group.

Michele

--- deborahwy <johnsons@...> wrote:

> Hello, I'm so happy to find this group! I had a

> c-toma removed when

> I was 10, 24 years age. Before now I have had no

> problems, unless

> my ear got wet. I have a complete loss of hearing

> on that side as

> all of my ossicles disintegrated. Recently, however

> I had an ear

> infection with drainage which was disgustingly foul

> smelling. This

> has never happened before. That was about a month

> ago and now I

> have a very painful ear. Not all the time, but

> especially when

> touched on the outside. It hurts to lay on that

> side, to put on

> tight fitting shirts that may touch it and I am

> constantly on guard

> with my little kids because I don't want to be

> accidentally touched

> there. I have a lot of ear pressure. What is weird

> to me and

> unusual is the amount of pain I have when I touch

> the outside.

> Could this be a recurrence? I can't get into the

> ENT for 10 more

> days. Any advice would be greatly appreciated.

> Debbie

>

__________________________________________________

June 8, 2002

Phil, at what point did you have your radical mastoidectomy, was it your last surgery? It is discouraging to read about what you've been through. You seem to handle it so well. Did the facial paralysis clear up? Do you still have problems with your balance?

Thanks for sharing

Lynn

I had some similar discomfort to yours (and a similar preconditon ie a non-functioning ear with no ossicles) which for years I tried to alleviate using using an antibiotic spray from my local doctor. By the time I got to surgery I'd begun to develop extra, more disabling symptoms (like headaches, facial paralysis and balance loss).

Phil

June 8, 2002

Hi Debbie

They do sound like classic symptoms. The c-toma in itself is a benign skin condition which can spread beyond the middle ear. It does become infected however, and this may cause the c-toma to become pus-filled, sort of squelchy and full up. With this you'd have a foul-smelling discharge and constant ear pain. As the c-toma grows the infection inevitably spreads, destroying flesh and bone in the surrounding ear. If left too long it could even lead to some kind of brain disease (which is why c-toma is seen as a serious ear-disease). Some symptoms are also aggravated symptoms by the c-toma putting pressure on the those cranial nerves which pass through the ear.

I had some similar discomfort to yours (and a similar preconditon ie a non-functioning ear with no ossicles) which for years I tried to alleviate using using an antibiotic spray from my local doctor. By the time I got to surgery I'd begun to develop extra, more disabling symptoms (like headaches, facial paralysis and balance loss).

It's so good that you can see your ENT soon because I'm sure your symptoms may only get worse.

Get well soon

Phil

strange ear symptom post c-toma...help!

Hello, I'm so happy to find this group! I had a c-toma removed when I was 10, 24 years age. Before now I have had no problems, unless my ear got wet. I have a complete loss of hearing on that side as all of my ossicles disintegrated. Recently, however I had an ear infection with drainage which was disgustingly foul smelling. This has never happened before. That was about a month ago and now I have a very painful ear. Not all the time, but especially when touched on the outside. It hurts to lay on that side, to put on tight fitting shirts that may touch it and I am constantly on guard with my little kids because I don't want to be accidentally touched there. I have a lot of ear pressure. What is weird to me and unusual is the amount of pain I have when I touch the outside. Could this be a recurrence? I can't get into the ENT for 10 more days. Any advice would be greatly appreciated. Debbie

June 8, 2002

Hi Lynn

Yes it was the last surgery in October, before that I'd never had cholesteatoma but had prevoius surgery for lots of other ear conditions. The last bout was in the mid 1980s when an ENT doctor told me (prophetically it happens) that I would have "big trouble one day unless something could be done". Once under general anaesthetic - it's not clear what they did, just poked around I think. And then under local anaesthetic they tried to scrape the eardrum from the top of the middle ear and also force open a permanently closed Eustachian Tube using some kind of "eletronic hammer" (despite the anaesthetic, it was the single most painful experience of my life). Anyhow, no success and later I was signed off out-patient care deemed as no longer able to be helped.

Children's Eustachian Tubes aren't properly formed often don't work too well which is why they are prone to ear infections. I seem to have been born with tubes which didn't open at all. I've never been able to blow my nose or had the experience of the ears popping that happens to people in aeroplanes (anyone else have this?). So I always had permanently perforated eardrums and conductive deafness from early on.

I must have the cholesteatoma for a very long time - about 3 years ago my high street doctor noticed a canal cholesteatoma (it makes it way down the ear canal and so is quite visible) an took it to be some kind of fungus. Sending a sample off to a testing lab and later informing me that it was a skin thing, he was as oblivious to what it was as I was at the time. He even discouraged me from going back to ENT, showing me a very old hospital report from his files from when I was 5 years old. There was already a catalogue of ear diseases which in those days they treated by taking the tonsils out and masses of penicillin injections (just recall the size of those needles). The doctor was trying to be helpful, thinking that it would be futile to expect any improvement after such a long time.

This has turned into an ear biography hasn't it? I wanted to illustrate that the c-toma was for me a bit of a turning point. I imagined, after years of ear trouble that maybe I was beginning to lose the battle. At one time I was literally crawling across the floor, couldn't open one eye, couldn't control my mouth, rigid neck, aching teeth and a head that seemed to be on fire - it struck me how strong the will to survive was. When I got to the hospital ENT wing, I saw people in far worse predicaments, some who'd their throats removed being fed by tubes through their stomachs - in comparison, I felt like I had a little scratch.

So I hope it isn't discouraging, in retrospect I'm grateful for what it taught me and even more grateful for the skills of the surgeon who brought me out of it. The face, the eye and everything came back. The balance is still ongoing but has progressed from severe vertigo to general unsteadiness and seems to be improving slowly. Balance is a low brain function and it takes time adjust to incorrect signals coming from the labyrinth.

Long answer to a short question

Thanks

Phil

Re: strange ear symptom post c-toma...help!

Phil, at what point did you have your radical mastoidectomy, was it your last surgery? It is discouraging to read about what you've been through. You seem to handle it so well. Did the facial paralysis clear up? Do you still have problems with your balance?

Thanks for sharing

Lynn

I had some similar discomfort to yours (and a similar preconditon ie a non-functioning ear with no ossicles) which for years I tried to alleviate using using an antibiotic spray from my local doctor. By the time I got to surgery I'd begun to develop extra, more disabling symptoms (like headaches, facial paralysis and balance loss).

Phil

June 9, 2002

> Hello, I'm so happy to find this group! I had a c-toma removed when