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This is so cool that there is a whole group of people that have the

same concerns/fears/issues I do! This is going to be a very long &

involved first posting as I've kept most of this bottled up for

nearly a year. I was first 'diagnosed' (for some reason writing that

out makes me feel like a terminally ill person) with a cholesteatoma

in my right ear September 2005. I had a hellacious ear infection out

of nowhere (or so I thought) that felt like someone was blowing my

eardrum up like a balloon & then stabbing it with a knife. Being a

typical impecunious student I didn't have health insurance so I went

to the student health center (SHC) & they gave me some antibiotics.

I had an ear infection for the better part of 6 weeks. Finally it

cleared up enough for a particularly observant doctor to notice there

was something behind my eardrum that shouldn't be there. He referred

me to a specialist. I don't know if any of you are in the

Albuquerque, NM area or familiar with it, but around here specialists

are few & far between so appointments are usually made 2 months out.

I think I made a bad impression in the ENT when we first met - when I

went in I wouldn't shake his hand because I had a cold & just sneezed

on my hand & didn't have time to wash them (I was actually on my way

to wash them when he called on me). I am a very germ-aware person &

think it's rude to knowingly spread germs around. Although in

hindsight he's an ENT & is in constant contact with 'mucousy'

children so it probably would have been OK to shake his hand. He was

very abrupt with me. He didn't seem to care that I was still in

immense pain even though the infection had cleared up. It hurt in

waves/pangs & hurt enough to make my right arm twitch & sometimes fly

out uncontrollably. A big problem because I was a bartender at the

time & was constantly throwing drinks around!) His response to my

concerns with the pain was " I don't know why it hurts. If you get

discharge, call us. " That's it! I also think he did a pre-judgment

of me because I am young (26) & have collected a few tattoos & he is

a military trained doc (marine). (Although the reverse is true,

too. I judged him to be prejudiced against me because he is military

trained. Oh well, onwards & upwards.) I had the CTs done; they

found I have what appeared to be 2 separate tumors. One behind in my

inner ear & one in my middle ear, connected somewhere in the middle

there. I didn't get to look at my CTs because the imaging place only

had them on a disk & because I thought the doctors office would

request the films be sent over (silly me) I didn't have time to get

the imaging place to print them before my follow up. After looking

at the CTs, doc came back, explained to me what he thought, told me

about the surgery, that I needed to get it done within the next 3-6

months, they are probably congenital, seemed imposed upon when I

asked him to explain more to me about where the tumors were, ect.,

ect. Then I explained to him that I had no health insurance, he

seemed shocked & not able to comprehend that it's possible to not

have health insurance this day and age. I had a post card reminder

filled out for me to call them in 3 months. So far, I have to say, I

am not at all impressed with Albuquerque doctor's customer service.

I went back to the SHC doc, who was very interested in my case b/c he

had never seen one before. He gave me info on some free health

insurance offered by the university hospital. Getting that took some

doing. I had to get denied by Medicaid first, there are residency

requirements (I've only been in New Mexico since June 2005),

eligibility appointments are a month out. Then there's a referral

requirement. All of these events have a 3-month delay between

events. So I finally went to the surgery specialist last month. He

explained that the pain is most likely coming from the fact that my

eardrum is super-stretched over some bones & such. He also linked it

to the fact that my eardrums are inverted? What an odd thing to

happen! He told me I have the tumors because my mum made the

decision to not put tubes in my ears when I was a kid. She didn't

think the side effects were much different from the ear problems I

already had. Hearing test = moderate hearing loss. I can't hear

high frequency noises (like microphone feedback but I've got tennitus

in that ear so bad it sounds like feedback all the time) & I can't

hear really low frequencies. I don't have examples of the low

frequencies because they didn't give them to me & I can't hear them!

I find the hearing loss somewhat useful when listening to people who

bore me, or for really obnoxious sounds, I just make sure they are on

my right side! I know it's rude but I can't help it, I have to have

some kind of benefit out of all this! I really like the specialist I

saw but he's not actually a specialist, he's a PA. He really

listened to my concerns - the one's I could think of, I get nervous

when I talk to doctors & forget to ask a lot of things. I always

write the stuff I want to ask down the night before the appointment

but then forget my paper. I found out that the first doc I went to

see is the only one who does surgery for this clinic! So then I get

this job (first day the day I went to see the specialist) with really

good health insurance & coverage. They don't consider this a pre-

existing condition so the surgery is covered. So I'm on their site,

looking for another ENT to go to & take a wild guess who the only ENT

in the area accepts my insurance? I can't seem to get away from this

guy! So, now that I am done with the long, involved, stultifying

story, here are my questions/concerns:

* My ENT is well qualified to perform my surgery, should I search for

another doctor in Santa Fe that I am more comfortable with? I mean,

is bedside manner all that important?

* My ear itches constantly. I mean constantly. You'd think I had

mites or something. Is this normal? I think it might itch all the

time because I can't ever scratch it as it's on the inside.

* When there's high pressure in the weather my ear feels like it is

stuffed with cotton. Again, normal?

* Is it really so bad to use q-tips? I've already got the tumors,

what more could happen? Also, it really helps to relieve some of the

inside itching, even if it is temporary. I've also already had the

worse earache/infection known to man (or to myself) that I could

possibly have. If I handled that I believe I could handle a small

one because of the dirt.

* Why did no other doctor see this in the past 26 years????? This is

what upsets me the most. I've had problems with my sinuses/ears/

tonsils all my life. I had my tonsils removed when I was 23 because

they were blocking my eustachian tubes. Why didn't that doctor

notice anything? When I would go to the doc for sinus infections

they would always check my ears & clean them for me because I use q-

tips & the wax would get stuck. I was always surprised when they

said there was a bit that just wouldn't come out. Now I find out

that the bit not coming out was a tumor.

* I sometimes get bits of hard, nerd-shaped & sized red or dark brown

wax in my ear - what are these - are these bits of my tumor falling

out?

* I read in a google group that some cholesteatomas will just stop

growing & sit in your ear like a lump & your really don't need

surgery. I really don't want to ask this one to the doc because of

course they are going to say this is completely false & surgery is

absolutely necessary - they have to eat & pay bills, too!

* What's post-surgery like?

* Does tennitus gets worse?

* Does it leave a scar? I think a scar on the back of the ear would

be kind of cool, like enstein's monster.

* Why won't they let you keep the tumor? This sounds like an odd

request but I have not seen anything of mine & I think if I could, I

would be less anxious about the whole thing.

* Would they let me videotape the surgery if I can't have the tumor?

* What is the danger of the surgeon 'slipping' & hurting vital parts

of your ear & /or brain?

*Were any of you incredibly anxious about this whole thing, loosing

sleep, becoming overly emotional? I cried a lot & still get tight-

throated & stingy eyed if I think about it too much or ask the

doctors questions. I seem to be more keenly aware of my mortality

now. I have found vitamin B helps with this.

I know I should call the doctor & ask these questions but I don't

want to be one of those 'the sky is falling!' patients. They seem

busy enough when I'm there, I don't want to intrude on other

patient's time.

Thanks for letting me rant! Like I said before, I've had this

bottled up for the better part of a year now & it feels good to

finally see that other people are inflicted with this.