Re: Re: Tympanomastoidectomy Coming Up -- Need Some Support

[Guest guest]

No, I have a second look surgery scheduled for December 20. My surgeon isn't

too optimistic about rebuilding,as the C-toma was throughout the middle ear.

I see him again this week with more questions.

Several people on this site said the surgery could take up to five hours.

Mine was actually 2 1/2. I only mention it as your family might worry if it

is taking longer than they expect. My husband that he was shocked when the

doc came out so soon.

Hope all goes well with you.

le

----------

>From: <anna@...>

>cholesteatoma

>Subject: Re: Tympanomastoidectomy Coming Up -- Need Some

Support

>Date: Thu, Dec 2, 2004, 11:36 PM

>

>

>

>

>

> Hi le,

>

> My surgery is on December 16 -- can't wait until it's over! My

> doctor scheduled it for 10:30-1:30 -- a full three hours. I suppose

> I'll wake up from anesthesia around 4:00 or 5:00. For some strange

> reason, being put under general anesthesia doesn't bother me too much

> even though I've read all the risks associated with that.

>

> My doctor was fairly confident that I'd have at least two surgeries

> based on the X-ray results -- one to remove the cholesteatoma and one

> to rebuild. Sounds like you got away with just one.

>

> I'll definitely report back to all of you after the surgery's done so

> that others will have more info.

>

>

>

>

>

>

>> Hi, ,

>>

>> I know you've had some responses, but I will chime in also and say

> that the

>> metallic taste, and numbness in my tongue went away. It seemed to

> come and

>> go for a while, but was really just a nuisance, not a big deal. It

> took

>> maybe two or three months (how quickly we forget!). I know it is

> scary and

>> this is not fun, but they have to tell you of all the possible

> problems. I

>> read someplace (maybe on this site) that they put some sort of

> monitor on

>> your facial nerve, so the possibility of damage is very slim. Also,

> if there

>> is some damage, it is likely to repair itself.

>>

>> It really wasn't too painful for me after my surgery. I think I

> took two of

>> the pain pills and that was all. It all just a very odd feeling,

> but you

>> know how that is with the feeling of fullness. It is uncomfortable

> sleeping

>> on 'the' side for a while, but you will figure out a way, if that's

> the side

>> you usually sleep on.

>>

>> When is your surgery? We will be thinking of you.

>>

>> le

>>

>> ----------

>> >From: <anna@g...>

>> >cholesteatoma

>> >Subject: Tympanomastoidectomy Coming Up -- Need

> Some Support

>> >Date: Wed, Dec 1, 2004, 3:33 PM

>> >

>>

>> >

>> >

>> >

>> > Hello All!

>> >

>> > I'm sorry everyone here has dealt with cholesteatoma. On the same

>> > token, it's good to meet other people who've dealt with this.

> Since

>> > being diagnosed last week, I've felt so lonely. I have a good

>> > surgeon, a loving husband and daughter, but still need to hear

> from

>> > people who've " been there " .

>> >

>> > I'm 33 and it's taken this long for this thing to be diagnosed.

> The

>> > little bugger's probably been there for years and years, but I

> wasn't

>> > diagnosed until a recent ear infection came and went leaving me

> with

>> > a full feeling that just wouldn't go away. At first, the doctor

>> > thought the fullness feeling was due to the perforation in my ear

>> > drum which I've had since childhood. He did a tympanoplasty to

> patch

>> > the hole, and while doing that, noticed a bit of cholesteatoma.

> He

>> > scraped it off and told me we'd watch it.

>> >

>> > Well, the patched hole burst again and we knew something was up.

> An

>> > ear X-ray revealed more cholesteatoma in the middle ear, so now

> I'm

>> > going in for a tympanomastoidectomy and am scared to death.

>> >

>> > This will sound silly, but one of my big fears is losing my

> taste. I

>> > love cooking and eating (who doesn't?) and am imagining how awful

> it

>> > would be to have the constant metallic taste I've heard about

> which

>> > often comes after surgery. Has anyone experienced this? Did it

> go

>> > away? It it as awful as it seems or just a nuisance? And just

> how

>> > painful is the recovery? Did pain medication help? I am just so

>> > scared right now that all I can think of is losing my taste,

> hearing,

>> > and facial muscle.

>> >

>> > I've gone back and read some of the experiences of others and have

>> > felt a little better about things, but any positive words would be

>> > appreciated. Thanks for being here.

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

>> >

[Guest guest]

-

Yes it does sound like our c-tomas are similar. Since I really didn't have

the drainage, smell, etc., I often wonder how I will ever know if there is

regrowth without surgery to check. Where are you and who is your doctor?

Will be thinking of you on the 16th.

le

----------

>From: <anna@...>

>cholesteatoma

>Subject: Re: Tympanomastoidectomy Coming Up -- Need Some

Support

>Date: Fri, Dec 3, 2004, 2:19 PM

>

>

>

>

> le, I think my cholesteatoma situation is very similar to yours

> since mine is also throughout my middle ear. Based on X-ray alone,

> my doctor's prognosis was three surgeries -- two if we're very lucky,

> but most likely three.

>

> The weirdest thing is how I've gone for so long without having any

> really bad symptoms -- no drainage, no smells -- nothing. I did get

> an ear infection this past summer, which is what spurred me to go to

> the doctor, but the thing must have been growing for years and years

> without my knowing. I've always had sensitivity to certain tones and

> occassional ringing in my ears and popping, but nothing serious

> enough to make me visit an ear doctor. I did know about the hole in

> my eardrum, but to me it was only a minor inconvenience and something

> I'd need to take care of in case I wanted to do some swimming.

>

>

>

>

>

>> >> Hi, ,

>> >>

>> >> I know you've had some responses, but I will chime in also and

> say

>> > that the

>> >> metallic taste, and numbness in my tongue went away. It seemed to

>> > come and

>> >> go for a while, but was really just a nuisance, not a big deal.

> It

>> > took

>> >> maybe two or three months (how quickly we forget!). I know it is

>> > scary and

>> >> this is not fun, but they have to tell you of all the possible

>> > problems. I

>> >> read someplace (maybe on this site) that they put some sort of

>> > monitor on

>> >> your facial nerve, so the possibility of damage is very slim.

> Also,

>> > if there

>> >> is some damage, it is likely to repair itself.

>> >>

>> >> It really wasn't too painful for me after my surgery. I think I

>> > took two of

>> >> the pain pills and that was all. It all just a very odd feeling,

>> > but you

>> >> know how that is with the feeling of fullness. It is

> uncomfortable

>> > sleeping

>> >> on 'the' side for a while, but you will figure out a way, if

> that's

>> > the side

>> >> you usually sleep on.

>> >>

>> >> When is your surgery? We will be thinking of you.

>> >>

>> >> le

>> >>

>> >> ----------

>> >> >From: <anna@g...>

>> >> >cholesteatoma

>> >> >Subject: Tympanomastoidectomy Coming Up -- Need

>> > Some Support

>> >> >Date: Wed, Dec 1, 2004, 3:33 PM

>> >> >

>> >>

>> >> >

>> >> >

>> >> >

>> >> > Hello All!

>> >> >

>> >> > I'm sorry everyone here has dealt with cholesteatoma. On the

> same

>> >> > token, it's good to meet other people who've dealt with this.

>> > Since

>> >> > being diagnosed last week, I've felt so lonely. I have a good

>> >> > surgeon, a loving husband and daughter, but still need to hear

>> > from

>> >> > people who've " been there " .

>> >> >

>> >> > I'm 33 and it's taken this long for this thing to be diagnosed.

>> > The

>> >> > little bugger's probably been there for years and years, but I

>> > wasn't

>> >> > diagnosed until a recent ear infection came and went leaving me

>> > with

>> >> > a full feeling that just wouldn't go away. At first, the

> doctor

>> >> > thought the fullness feeling was due to the perforation in my

> ear

>> >> > drum which I've had since childhood. He did a tympanoplasty to

>> > patch

>> >> > the hole, and while doing that, noticed a bit of cholesteatoma.

>> > He

>> >> > scraped it off and told me we'd watch it.

>> >> >

>> >> > Well, the patched hole burst again and we knew something was

> up.

>> > An

>> >> > ear X-ray revealed more cholesteatoma in the middle ear, so now

>> > I'm

>> >> > going in for a tympanomastoidectomy and am scared to death.

>> >> >

>> >> > This will sound silly, but one of my big fears is losing my

>> > taste. I

>> >> > love cooking and eating (who doesn't?) and am imagining how

> awful

>> > it

>> >> > would be to have the constant metallic taste I've heard about

>> > which

>> >> > often comes after surgery. Has anyone experienced this? Did

> it

>> > go

>> >> > away? It it as awful as it seems or just a nuisance? And just

>> > how

>> >> > painful is the recovery? Did pain medication help? I am just

> so

>> >> > scared right now that all I can think of is losing my taste,

>> > hearing,

>> >> > and facial muscle.

>> >> >

>> >> > I've gone back and read some of the experiences of others and

> have

>> >> > felt a little better about things, but any positive words

> would be

>> >> > appreciated. Thanks for being here.

>> >> >

>> >> >

>> >> >

>> >> >

>> >> >

>> >> >

>> >> >

>> >> >

>> >> >

>> >> >

[Guest guest]

My son's ctoma doesn't drain, but I can always tell when it's coming back by (first symptom) increased motion sickness in the car. The second symptom is headaches.

Marie

[Guest guest]

It definitely is in the case of my son. I've been right every time so far when I've taken him in based on increased motion sickness (although I would be happier to be wrong). You should mention that symptom to your doctor.

Marie