Re: What were your symptoms?

[Guest guest]

hi betty im in just about the same time frame as you ,dont know what is happing ,hopfully this is just ra and with pred i can get it controlled but wont know till the 5th,i do know what your going through for i have been doing this a week now .hope the best for you KIrk

[Guest guest]

Bettie-

My symptoms were pretty quiet. I didn't have any obvious infection or

drainage, I just couldn't hear well out of my left ear (kept thinking people

were mumbling on the phone, then one day I switched the phone to my right

ear and voices were clearer!). I mentioned it to my family practice

physician during my regular check up last January. She found a perforated

eardrum and thought she saw c-toma, so she referred me to an otologist.

Anyway, I just had my second surgery with a partial ossicular replacement

prosthesis (PORP) a week and a half ago.

This is a long road and it is frightening at times. Keep asking questions of

your doctor. There is a lot they can't tell until they are in there, but you

should be able to get some idea of possibilities. I know I can remain more

rational with information. Without it, I just disintegrate into a scared

puddle of emotion. We are here for you. Best wishes.

le

----------

>From: bettiejlew <bjl1105@...>

>cholesteatoma

>Subject: What were your symptoms?

>Date: Thu, Dec 30, 2004, 6:26 PM

>

>

>

>

> Hello everyone, as a newly diagnosed patient I am curious as to the

> symptoms that drove you to seek ENT services? I had my first ear

> ear infection only 3 months ago. It cleared, but came right back.

> Another round of antibiotics cleared it a second time, but the fluid

> wouldnt leave. The ENT was doing a myringotomy to drain the fluid

> from the middle ear when he found the Ctoma. I dont know who was

> more surprised, him or me! I am now 3 months into this mess, and I

> am just getting hooked up with an otologist in NYC. I am feeling

> very uncomfortable, fatigued, have no hearing in my left ear at all,

> and am very anxious to know the extent of the damage. Unfortunately,

> the ENT didnt offer alot of info at my outpatient visit, and he has

> been on vacation since. I am scheduled to see my ENT this Mon

> afternoon, at which time he will call the Otolyngologist(sp?) in NYC

> and sched an appt. The ENT did say the Ctoma was *leaning into* ?

> the inner ear, and had already destroyed part of my bone in my ear.

> Doesnt sound promising to me . Anyway, was just wondering how

> it all started for you? And best wishes to all of you recoving at

> one stage or another! The NYC Specialist is out of Columbia

> Presbyterian and I believe his name is Dr. Jack Wazen. Anyone know

> of him?

> Thanks for being here!!!!

> Bettie

>

>

> ettie

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

le,

I find it amazing that something so serious can be lurking in an ear

without anyone's knowledge. These c tomas can be in there for

years.

Thanks for sharing your story. I ended up in the ENT's office today

(the one who is covering for my ENT while on vacation) because the

eardrum had closed and my ear is again infected. Started 3rd round

of antibiotics. I guess this is going to be along haul. It is good

to know that you're doing well after your surgery. Wishing you a

speedy recovery!

Happy New Year

Bettie

> Bettie-

>

> My symptoms were pretty quiet. I didn't have any obvious infection

or

> drainage, I just couldn't hear well out of my left ear (kept

thinking people

> were mumbling on the phone, then one day I switched the phone to

my right

> ear and voices were clearer!). I mentioned it to my family practice

> physician during my regular check up last January. She found a

perforated

> eardrum and thought she saw c-toma, so she referred me to an

otologist.

> Anyway, I just had my second surgery with a partial ossicular

replacement

> prosthesis (PORP) a week and a half ago.

>

> This is a long road and it is frightening at times. Keep asking

questions of

> your doctor. There is a lot they can't tell until they are in

there, but you

> should be able to get some idea of possibilities. I know I can

remain more

> rational with information. Without it, I just disintegrate into a

scared

> puddle of emotion. We are here for you. Best wishes.

>

> le

>

> ----------

> >From: bettiejlew <bjl1105@o...>

> >cholesteatoma

> >Subject: What were your symptoms?

> >Date: Thu, Dec 30, 2004, 6:26 PM

> >

>

> >

> >

> >

> > Hello everyone, as a newly diagnosed patient I am curious as to

the

> > symptoms that drove you to seek ENT services? I had my first ear

> > ear infection only 3 months ago. It cleared, but came right

back.

> > Another round of antibiotics cleared it a second time, but the

fluid

> > wouldnt leave. The ENT was doing a myringotomy to drain the

fluid

> > from the middle ear when he found the Ctoma. I dont know who was

> > more surprised, him or me! I am now 3 months into this mess,

and I

> > am just getting hooked up with an otologist in NYC. I am feeling

> > very uncomfortable, fatigued, have no hearing in my left ear at

all,

> > and am very anxious to know the extent of the damage.

Unfortunately,

> > the ENT didnt offer alot of info at my outpatient visit, and he

has

> > been on vacation since. I am scheduled to see my ENT this Mon

> > afternoon, at which time he will call the Otolyngologist(sp?) in

NYC

> > and sched an appt. The ENT did say the Ctoma was *leaning

into* ?

> > the inner ear, and had already destroyed part of my bone in my

ear.

> > Doesnt sound promising to me . Anyway, was just wondering

how

> > it all started for you? And best wishes to all of you recoving

at

> > one stage or another! The NYC Specialist is out of Columbia

> > Presbyterian and I believe his name is Dr. Jack Wazen. Anyone

know

> > of him?

> > Thanks for being here!!!!

> > Bettie

> >

> >

> > ettie

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi Kirk,

I am assuming you are recently diagnosed too? what is ra? and is

pred short for prednisone? I haven't read about any options for

treatment other than surgery... where are you heading on the 5th? Dr

visit or hospital? Good luck either way and Happy New Year!

Bettie

-- In cholesteatoma , kirkkaron@a... wrote:

> hi betty im in just about the same time frame as you ,dont know

what is

> happing ,hopfully this is just ra and with pred i can get it

controlled but wont

> know till the 5th,i do know what your going through for i have

been doing this

> a week now .hope the best for you KIrk