just been diagnosed with a cholesteatoma

[Guest guest]

Hi everyone i'm new here, I've just been to the ent specialist who

had to pull some crust covering my right ear drum to confirm a

cholesteatoma. it's a small one he said but is wrapped around one of

the hearing bones and the drum it'self is perforated, i also have a

small pocket in the attic of my left ear but no evidence of a growth.

i had been telling the doctor that there felt like there was

something in my ear for about 3-4 years now and he couldnt find

anything but this winter just about made me lose my sanity with the

pain of it all, especially at night with the temperature drop, so i

figured to hell with it, i'm going straight to a ENT specialist,

thank god i did!

I have no idea what i'm in for after finding this out.

i have to go back and see him next month as to what will happen and

when surgery will occur(wish i could afford private)

i've had the rotten luck of bursting ear drums at leat once a year

from the age of 3-15.........i guess i was an accident waiting to

happen in some ways

can anyone give me a heads up on what i am to expect, i dont see the

ENT specialist till next month.

[Guest guest]

Ahh... What to expect, most of what you read here is what to expect.

All and all as uncomfortable as many of the procedures and surgery

may seem it aint all that bad. I had to comment on your discovery

though, why is it that we have to tell the DOctors there is a problem

and they cant figure it out themselves. I had loss of hearing and

cronic ear infections for years I only had my ear drum rupture once

and even then the Doc said its just an infection. One day while in

the office I siad hey Doc, I think there is something in my ear and

he did further investigation, he called it a pollup (sp?) any way off

to the specialist for a cat scan and sure enough it was a ctoma. Got

the 1st surgery to remove it and then the 2nd to explore for more and

was all clear. Well after sitting for over 2 hours in his office for

follow up exams I gave up. Then the hearing loss came back and it was

off to another specialist who said the ctoma had come back and siad

due to the reoccurance I needed to see the specialists specialist. So

off I went to the MEI Michigan Ear Institute. He scheduled my next

surgery to remove the new ctoma and told me I have another one in my

right ear. Well here it is a year later and I went in for the

reconstructive surgery to get some hearing back. This time they put

an implant in my ear to replace the damaged bones and I had quite a

spell with diziness for about a week. I finally woke up felling

someone stable today (a full week after the surgery).

As far as what to expect, lots of Doc office visits, surgery and

about a 2 week recovery (I felt ok after about a week but used the

2nd week anyway) and lots of follow up visits. Then usually a second

surgery to explore for more and possibly reconstruct depending on the

damage. I am beggining to feel like a used car, contantly needing

tinkering. I have 5 surgeries on the same ear, 3 of those for the

reoccurance. I only hope the right ear is not so bad. I have read

about the canal wall up or down surgery but dont know alot about it

so I must have had canal wall up surgeries. I have high hopes for

hearing resoration. After the 2nd surgery It was like walking around

with a wad of cotton in my ear. I was awake for the later part of the

reconstruc surgery and when the doc was installing the implant I

could actually hear the clearest I had in years. I hope it takes.

I know its a bit long winded but I am recovering from surgery a week

ago and am supposed to be taking it easy. Good Luck

[Guest guest]

thanks so much for your reply,

wow i hope you finally get some relief with the inplant, was your's

a large Ctoma?

i'm interested to know if they remove the ear bones in all cases of

a Ctoma around a bone, and what happens with that suituation.

However the road to recovery is a good though sometimes hard road

and i hope your up and taking on the world again in no time with the

implant doing it's job.

you are so right, when we tell a doctor that we think something is

in our ears we arent saying it for attention or as a joke. i'm

beginning to think that GP doctor training doesnt really go much

into ear disorders as at least two doctors have sent me on my merry

way after giving me no answer but quite happy to charge me the earth

for the visit....scroundrels!

i am hanging out to get my next appointment sent from the hosptial.

the sooner this op is the better, knowing it's there, growing away

quite happily is a bit disturbing. but at least i'm going to get

better and that is the main thing.

i figure i'm one of the big sooks in life as i read about people who

have numerous ctoma's or ones so large there arent much of any ear

bones left. in the days leading up to the decision to go straight to

a specialist the pain was almost unbearable, i was chucking tantrums

left right and centre at the fustration of it all and 5pm was the

worst time.

the pain was intensified at dusk when the temperature would drop so

i had the fire roaring all day just to keep the temp up in the house

to a level where i could still function without losing the plot,

however now it's summer the pain isnt anything like before.

i think anyone who is dealing with a large or numerous ctom's are

incredibally brave, especially the little kiddies.

what i find iritates me is people who think there is nothing wrong

with me as physically i dont look sick, but i have a constant lack

of energy, half due to a ear drum trying to heal that cant, the

memory of a goldfish, and the uncanny ability to walk into door

frames.....and i guess a ctoma doesnt make life any easier.

in saying that i dont want sympathy, just some understanding and no

more helen keller jokes.

anyway take it easy, rest up and i hope your feeling 100% sooner

rather than later.

>

> Ahh... What to expect, most of what you read here is what to

expect.

> All and all as uncomfortable as many of the procedures and surgery

> may seem it aint all that bad. I had to comment on your discovery

> though, why is it that we have to tell the DOctors there is a

problem

> and they cant figure it out themselves. I had loss of hearing and

> cronic ear infections for years I only had my ear drum rupture

once

> and even then the Doc said its just an infection. One day while in

> the office I siad hey Doc, I think there is something in my ear

and

> he did further investigation, he called it a pollup (sp?) any way

off

> to the specialist for a cat scan and sure enough it was a ctoma.

Got

> the 1st surgery to remove it and then the 2nd to explore for more

and

> was all clear. Well after sitting for over 2 hours in his office

for

> follow up exams I gave up. Then the hearing loss came back and it

was

> off to another specialist who said the ctoma had come back and

siad

> due to the reoccurance I needed to see the specialists specialist.

So

> off I went to the MEI Michigan Ear Institute. He scheduled my next

> surgery to remove the new ctoma and told me I have another one in

my

> right ear. Well here it is a year later and I went in for the

> reconstructive surgery to get some hearing back. This time they

put

> an implant in my ear to replace the damaged bones and I had quite

a

> spell with diziness for about a week. I finally woke up felling

> someone stable today (a full week after the surgery).

>

> As far as what to expect, lots of Doc office visits, surgery and

> about a 2 week recovery (I felt ok after about a week but used the

> 2nd week anyway) and lots of follow up visits. Then usually a

second

> surgery to explore for more and possibly reconstruct depending on

the

> damage. I am beggining to feel like a used car, contantly needing

> tinkering. I have 5 surgeries on the same ear, 3 of those for the

> reoccurance. I only hope the right ear is not so bad. I have read

> about the canal wall up or down surgery but dont know alot about

it

> so I must have had canal wall up surgeries. I have high hopes for

> hearing resoration. After the 2nd surgery It was like walking

around

> with a wad of cotton in my ear. I was awake for the later part of

the

> reconstruc surgery and when the doc was installing the implant I

> could actually hear the clearest I had in years. I hope it takes.

>

> I know its a bit long winded but I am recovering from surgery a

week

> ago and am supposed to be taking it easy. Good Luck

>