Re: this has me scared to death

[Guest guest]

In a message dated 07/24/2002 1:28:34 AM Eastern Daylight Time, safari_76@... writes:

So

pretty much at this point i don't know if i could die from this or

what.

Hello Rhonda, and welcome to the group.

Oh dear, no, you won't die from this! It's not quite a walk in the park, but it is treatable once discovered. Perhaps your doctor wasn't quite clear, the thing is it used to be fatal "back in the day" and it still is a condition which requires surgery but with modern medicine it is not a terminal condition.

That said, you do need to stay on top of it & move quickly with treatment/surgery as the nature of cholesteatoma is that it is destructive and so the longer it is left inside your head the more damage it may do.

Where in upstate NY are you? I used to live in the Hudson Valley and had 2 cholesteatoma surgeries with an ENT in Mt. Kisco (Westchester County) that I liked. Are there any cities near you - Albany, Buffalo, Rochester, Syracuse? Ithaca would be great (Cornell). Sometimes the best doctors can be found in cities with teaching hospitals. If you are not comfortable with your ENT, get a second opinion. Maybe your military insurance covers this with a diagnosis requiring surgery?

I am a high anxiety person myself & I know that cholesteatoma can be scary. I suggest you look in the archives of this group at past postings & check out all the info available via links in the Bookmarks section. The more you know about this condition, the better able you'll be to find a doctor that makes you comfortable. The more comfortable you are with your doctor, the less anxious you'll be. It's like a big circle!

We are here for you. Good luck.

[Guest guest]

Rhonda,

Welcome to the group. First of all CALM DOWN. You are not going to die

from this. It is a major inconvenience, but it is treatable. The only

treatment is surgery though and the sooner the better, cause c-tomas tend to

continue their destructive ways. Think of it as a cyst, not a tumor. It

isn't cancer, but it does grow. If they get infected, they are messy and

cause a lot more damage, so the sooner it is out the better.

The doctor is doing a CT scan so that he can see how big the c-toma is, and

where it has invaded. C-tomas often erode the ossicles, and cause hearing

loss and they can also cause erosion into other structures such as the

balance canals. When you have your surgery, your doctor will remove the

growth, and repair what is damaged including fixing your eardrum. There

are different techniques for surgery, and it all depends on the results of

the CT Scan and what your surgeon finds when he goes in. Sometimes they

also have to clean out the mastoid, that is called a mastoidectomy. That is

actually a pretty common part of the surgery. The surgery can take anywhere

from about 2 hours to 6 hours, and sometimes you will be admitted to

hospital overnight. You will need only from 1 to 2 weeks off work. But

recovery is usually good. Some people have dizzyness, and pain, but usually

that is manageable. You will have packing in your ear initially, and you

will see your surgeon the next day if you are not hospitalized, and again

approx a week later. Then it is between you and your doctor.

The important thing is not to get overly anxious about this. Read up on it

here, there are a lot of links and bookmarks on the web site, and keep an

open mind. And ask questions. Knowing what is happening is very good.

Lynn

this has me scared to death

> hi everyone .....well i went to an ENT 2 days ago ....he said i have

> cholesteatoma...and in 2 days i have a CT scan ....the doc terrified

> me by saying " this is very serious, you pretty much have no ear drum

> left " . Now i suffer from anxiety and panic attacks so for someone

> like me that meant omg i'm dying lol Then he continues to say " i

> think you'll be ok and we'll fix ya up " . I Just don't know what to

> make of all this ...and any encouragment here would be so wonderful.

> I was shocked to even find this group and very greatful at the same

> time. The doc didn't really answer anything i'm scared about...all he

> said was he doesn't know anything until he sees the CT scan. So

> pretty much at this point i don't know if i could die from this or

> what.

>

> Rhonda

>

>

>

>

[Guest guest]

this has me scared to death

> hi everyone .....well i went to an ENT 2 days ago ....he said i have

> cholesteatoma...and in 2 days i have a CT scan ....the doc terrified

> me by saying " this is very serious, you pretty much have no ear drum

> left " . Now i suffer from anxiety and panic attacks so for someone

> like me that meant omg i'm dying

Well, it's no laughing matter that's for sure. But in today's world it's

hardly a terminal illness. Just do what the doc tells you, do NOT be afraid

to get a second opinion from an ENT specialist, in fact I recommend it, and

once they've operated it will be gone, most likely for good. Ear drums can

be rebuilt from a skin graft, which is easy by today's standards. Please

don't make your situation worse with undue worrying.

--

Cheers,

--Jeff

[Guest guest]

Hi Lynn...thank u for being so supportive and making me feel so much

better. The outlook i have today is " well if allt hese people lived

to tell their stories then so will i " lol I guess the worst thing i

did after i found out was i came online and read abotu it ...and i

know 90 percent of the time this info is always THEE worst cases.

When i read about it growing into ur brain i about lost it . For the

last 2 days all i could think about was dying and having to leave my

little girl. I am so happy i found this place. I think all of u are

my " angels " and i found this group for a reason. I have the CT scan

done tomorrow...and i see the doc again on the 29th july...so in that

time it's gonna be hell wondering what the CT scan reveals. Then i go

on holidays from july 31st til 7th aug so i guess i'll have the

surgery done when i get back..take care and thank you so much

Rhonda

> Rhonda,

> Welcome to the group. First of all CALM DOWN. You are not going

to die

> from this. It is a major inconvenience, but it is treatable. The

only

> treatment is surgery though and the sooner the better, cause c-

tomas tend to

> continue their destructive ways. Think of it as a cyst, not a

tumor. It

> isn't cancer, but it does grow. If they get infected, they are

messy and

> cause a lot more damage, so the sooner it is out the better.

> The doctor is doing a CT scan so that he can see how big the c-toma

is, and

> where it has invaded. C-tomas often erode the ossicles, and cause

hearing

> loss and they can also cause erosion into other structures such as

the

> balance canals. When you have your surgery, your doctor will

remove the

> growth, and repair what is damaged including fixing your eardrum.

There

> are different techniques for surgery, and it all depends on the

results of

> the CT Scan and what your surgeon finds when he goes in. Sometimes

they

> also have to clean out the mastoid, that is called a

mastoidectomy. That is

> actually a pretty common part of the surgery. The surgery can take

anywhere

> from about 2 hours to 6 hours, and sometimes you will be admitted to

> hospital overnight. You will need only from 1 to 2 weeks off

work. But

> recovery is usually good. Some people have dizzyness, and pain,

but usually

> that is manageable. You will have packing in your ear initially,

and you

> will see your surgeon the next day if you are not hospitalized, and

again

> approx a week later. Then it is between you and your doctor.

> The important thing is not to get overly anxious about this. Read

up on it

> here, there are a lot of links and bookmarks on the web site, and

keep an

> open mind. And ask questions. Knowing what is happening is very

good.

> Lynn

>

>

> this has me scared to death

>

>

> > hi everyone .....well i went to an ENT 2 days ago ....he said i

have

> > cholesteatoma...and in 2 days i have a CT scan ....the doc

terrified

> > me by saying " this is very serious, you pretty much have no ear

drum

> > left " . Now i suffer from anxiety and panic attacks so for someone

> > like me that meant omg i'm dying lol Then he continues to say " i

> > think you'll be ok and we'll fix ya up " . I Just don't know what

to

> > make of all this ...and any encouragment here would be so

wonderful.

> > I was shocked to even find this group and very greatful at the

same

> > time. The doc didn't really answer anything i'm scared

about...all he

> > said was he doesn't know anything until he sees the CT scan. So

> > pretty much at this point i don't know if i could die from this or

> > what.

> >

> > Rhonda

> >

> >

> >

> >

[Guest guest]

Hi Jeff...thanks for the encouragement I am more then greatful to

have found this group last night ...i hadn't slept in days just

thinkin' i was going to die from this. But all the comforting posts

has made me feel so much better. Now wish me luck with the CT scan

tomorrow

Rhonda

> this has me scared to death

>

>

> > hi everyone .....well i went to an ENT 2 days ago ....he said i

have

> > cholesteatoma...and in 2 days i have a CT scan ....the doc

terrified

> > me by saying " this is very serious, you pretty much have no ear

drum

> > left " . Now i suffer from anxiety and panic attacks so for someone

> > like me that meant omg i'm dying

>

> Well, it's no laughing matter that's for sure. But in today's world

it's

> hardly a terminal illness. Just do what the doc tells you, do NOT

be afraid

> to get a second opinion from an ENT specialist, in fact I recommend

it, and

> once they've operated it will be gone, most likely for good. Ear

drums can

> be rebuilt from a skin graft, which is easy by today's standards.

Please

> don't make your situation worse with undue worrying.

>

> --

> Cheers,

> --Jeff

[Guest guest]

Hi Rhonda,

Well, I'm a little slow to answer, but I understand your panic. I logged on here a couple of months ago in a very similar fashion. I, however, am not the patient. My daughter is. She found out last Thursday that she definitely had a c-toma and will be having surgery on September 4 -- so we'll go through this together and we'll all be fine! This group has been a great help in easing my fears. I see they are doing the same for you. Just keep reading, educate yourself, know the basics and ask lots of questions. You will be just fine.

What part of Texas did you move from? I live in Houston, and we have found a GREAT doctor. Thought maybe if your holiday is taking you to visit family back in Texas you might want to check in with him. His name is Dr. Coker and he works out of the Methodist Hospital System at the Medical Center. He really seems like the best we could have asked for. Let me know if you want his phone number and address ... I'll get it to you.

Well, I will be sharing with the group as I go through this with my daughter, , and I trust before we know it, it will all be behind us. Take care and calm down, this too shall pass!

God Bless,

Dianne

Safari_76 <safari_76@...> wrote: hi everyone .....well i went to an ENT 2 days ago ....he said i have cholesteatoma...and in 2 days i have a CT scan ....the doc terrified me by saying "this is very serious, you pretty much have no ear drum left". Now i suffer from anxiety and panic attacks so for someone like me that meant omg i'm dying lol Then he continues to say "i think you'll be ok and we'll fix ya up" . I Just don't know what to make of all this ...and any encouragment here would be so wonderful. I was shocked to even find this group and very greatful at the same time. The doc didn't really answer anything i'm scared about...all he said was he doesn't know anything until he sees the CT scan. So pretty much at this point i don't know if i could die from this or what.Rhonda

[Guest guest]

HI Diane well now i know i'll have someone to go thru this with!!!

gosh i won't be sorry when it's alllllllllll done and over.....now

the waiting is the worse. I moved from Ft.Hood Tx ...hubby is Army.

And unfortunately i'm not going back to Texas ...i'm going to

California for my hubby's highschool reunion.....so i guess i got

that wonderful surgery to look forward to when i come back lol But

Jeff gave me a great outlook on it all today ...i talked to him for a

long time on ...and what he said makes sense " as soon as your

diagnosed your on the road to recovery " and that's true. Take care

girl and talk to ya soon

Rhonda

hi everyone .....well i went to

an ENT 2 days ago ....he said i have

> cholesteatoma...and in 2 days i have a CT scan ....the doc

terrified

> me by saying " this is very serious, you pretty much have no ear

drum

> left " . Now i suffer from anxiety and panic attacks so for someone

> like me that meant omg i'm dying lol Then he continues to say " i

> think you'll be ok and we'll fix ya up " . I Just don't know what to

> make of all this ...and any encouragment here would be so

wonderful.

> I was shocked to even find this group and very greatful at the same

> time. The doc didn't really answer anything i'm scared about...all

he

> said was he doesn't know anything until he sees the CT scan. So

> pretty much at this point i don't know if i could die from this or

> what.

>

> Rhonda

>

>

>

[Guest guest]

Hi Rhonda

I just wanted to go along with everyone else in hoping to ease you concerns about this diagnosis. Try to take some comfort in knowing that if you haven't got all those nasty symptoms you may have been reading about - then your not in going to be facing any great disaster. And even in those worst possible cases - well, nobody dies any more! At the very least, you've found a new group of people you can talk to about this - I'm sure that there won't many other people you come across who've even heard of cholesteatoma.

Hope it all goes well.

Phil