Yet another person who was just diagnosed with Cholesteatoma at age 29 (F)

[Guest guest]

I have had ear problems since I was a young girl. I had multiple

surgeries with tubes in and out in and out because of recurring ear

infections. My left ear has been an issue all my life and I have

moderate hearing loss since I was young. My right ear, thank

goodness, is fine. As a young child I with all those surgeries they

perforated my left ear drum and then grafted it. I have little

feeling in that ear and my family doctor found out I had an infection

in my ear about 8-12 months ago on a routine check-up. I did not know

I had an infection since there is no feeling (no ear aches). I was

sent to an ENT after 4 months of trying to treat an infection that

would not go away via oral antibiotics. After seeing my ENT he told

me there was an infection and that we had to treat it with drops. I

had continued on that and seen him after 6 months (today). He told me

of the possibility of Cholesteatoma, but said he wouldn't know for

sure until the infection is cleared up. Well today the infection is

gone and he actually had to go in and pull out the dead skin cells

from my ear....that was FUN! Not terribly painful, but most

uncomfortable. He said that yes I do have Cholesteatoma, but we need

a CT scan to see how much damage it has caused. I have heard of

facial paralysis and your taste changing, but that has not happened

to me so can I safely assume it is not as bad as some others?

Any advice or tips would be much appreciated!

Thanks,

Amiee from Nova Scotia, Canada

[Guest guest]

Aimee,

My husband had his first ctoma removed in Feb 08. He did not have any facial peralysis or change in taste, but he does have numbness of the outer ear (mainly where they removed cartilege to repair ear bones). He also had several sets of tubes at a young age, then seemed to clear up until about 2 years ago. We've been through all the oral antibiotics and still use drops to this day (they are like gold to us). He will have #2 removed later this year.

Good Luck, it can be a long road.

Omaha, Nebraska

From: amieefromnscanada <amieewilson@...>Subject: Yet another person who was just diagnosed with Cholesteatoma at age 29 (F)cholesteatoma Date: Thursday, September 18, 2008, 12:44 PM

I have had ear problems since I was a young girl. I had multiple surgeries with tubes in and out in and out because of recurring ear infections. My left ear has been an issue all my life and I have moderate hearing loss since I was young. My right ear, thank goodness, is fine. As a young child I with all those surgeries they perforated my left ear drum and then grafted it. I have little feeling in that ear and my family doctor found out I had an infection in my ear about 8-12 months ago on a routine check-up. I did not know I had an infection since there is no feeling (no ear aches). I was sent to an ENT after 4 months of trying to treat an infection that would not go away via oral antibiotics. After seeing my ENT he told me there was an infection and that we had to treat it with drops. I had continued on that and seen him after 6 months (today). He told me of the possibility of Cholesteatoma, but

said he wouldn't know for sure until the infection is cleared up. Well today the infection is gone and he actually had to go in and pull out the dead skin cells from my ear....that was FUN! Not terribly painful, but most uncomfortable. He said that yes I do have Cholesteatoma, but we need a CT scan to see how much damage it has caused. I have heard of facial paralysis and your taste changing, but that has not happened to me so can I safely assume it is not as bad as some others? Any advice or tips would be much appreciated!Thanks,Amiee from Nova Scotia, Canada

[Guest guest]

Hello,

My C-toma was removed three days ago. I have lost partial taste on the right side of my tongue. It's a little weird, I can feel the temperature yet I cannot taste a single thing. Does anyone know how long this side effect last?

Dave

ville, FL

From: amieefromnscanada <amieewilson@ hotmail.com>Subject: Yet another person who was just diagnosed with Cholesteatoma at age 29 (F)cholesteatomaDate: Thursday, September 18, 2008, 12:44 PM

I have had ear problems since I was a young girl. I had multiple surgeries with tubes in and out in and out because of recurring ear infections. My left ear has been an issue all my life and I have moderate hearing loss since I was young. My right ear, thank goodness, is fine. As a young child I with all those surgeries they perforated my left ear drum and then grafted it. I have little feeling in that ear and my family doctor found out I had an infection in my ear about 8-12 months ago on a routine check-up. I did not know I had an infection since there is no feeling (no ear aches). I was sent to an ENT after 4 months of trying to treat an infection that would not go away via oral antibiotics. After seeing my ENT he told me there was an infection and that we had to treat it with drops. I had continued on that and seen him after 6 months (today). He told me of the possibility of Cholesteatoma, but

said he wouldn't know for sure until the infection is cleared up. Well today the infection is gone and he actually had to go in and pull out the dead skin cells from my ear....that was FUN! Not terribly painful, but most uncomfortable. He said that yes I do have Cholesteatoma, but we need a CT scan to see how much damage it has caused. I have heard of facial paralysis and your taste changing, but that has not happened to me so can I safely assume it is not as bad as some others? Any advice or tips would be much appreciated!Thanks,Amiee from Nova Scotia, Canada

[Guest guest]

Hi Amiee,

I think the number one piece of advice I would offer is to seek out a world class, Neuro-otologist. You want to take as few chances with your surgery as you can, and locating a top notch surgeon with extensive experience of the condition is vital.

Good luck!

From: amieefromnscanada <amieewilson@...>Subject: Yet another person who was just diagnosed with Cholesteatoma at age 29 (F)cholesteatoma Date: Thursday, September 18, 2008, 1:44 PM

I have had ear problems since I was a young girl. I had multiple surgeries with tubes in and out in and out because of recurring ear infections. My left ear has been an issue all my life and I have moderate hearing loss since I was young. My right ear, thank goodness, is fine. As a young child I with all those surgeries they perforated my left ear drum and then grafted it. I have little feeling in that ear and my family doctor found out I had an infection in my ear about 8-12 months ago on a routine check-up. I did not know I had an infection since there is no feeling (no ear aches). I was sent to an ENT after 4 months of trying to treat an infection that would not go away via oral antibiotics. After seeing my ENT he told me there was an infection and that we had to treat it with drops. I had continued on that and seen him after 6 months (today). He told me of the possibility of Cholesteatoma, but

said he wouldn't know for sure until the infection is cleared up. Well today the infection is gone and he actually had to go in and pull out the dead skin cells from my ear....that was FUN! Not terribly painful, but most uncomfortable. He said that yes I do have Cholesteatoma, but we need a CT scan to see how much damage it has caused. I have heard of facial paralysis and your taste changing, but that has not happened to me so can I safely assume it is not as bad as some others? Any advice or tips would be much appreciated!Thanks,Amiee from Nova Scotia, Canada

[Guest guest]

>Hi Aimiee,

I've had 2 surgeries now on my left ear, the last one was in Aug.

My right ear is so far fine. Ever since I was a young child I've

had problems with the left ear, and was diagnosed with cholesteatoma

when I was 40.

As far as I know, the only way the doctor can really tell how large

the cholesteatoma is during surgery. Apparently the ct scans are

not very accurate when looking into the ear. This is according to

my Dr. So he didn't even bother giving me a CT, since he could

already see the cholesteatoma through the hole in my ear drum. He

also had to extract some of the cyst from my ear to biopsy it, and I

can say, yeah ,you're right, not much fun!

You might find after your surgery that you have some loss of taste,

which is due to nerve damage during surgery. Ususally that doesn't

last very long. Facial paralysis is a pretty rare complication, so

I wouldn't worry about it.

I'm also in Canada, near Vancouver. You'll probably find you won't

have much choice when it comes to choosing a surgeon. There are a

few doctors in my area who perform that type of surgery, but there's

really no way to know if one is better than another. No information

regarding that is available anywhere in Canada, as far as I can

tell.

Good luck with your surgery,

Jackie

> I have had ear problems since I was a young girl. I had multiple

> surgeries with tubes in and out in and out because of recurring

ear

> infections. My left ear has been an issue all my life and I have

> moderate hearing loss since I was young. My right ear, thank

> goodness, is fine. As a young child I with all those surgeries

they

> perforated my left ear drum and then grafted it. I have little

> feeling in that ear and my family doctor found out I had an

infection

> in my ear about 8-12 months ago on a routine check-up. I did not

know

> I had an infection since there is no feeling (no ear aches). I was

> sent to an ENT after 4 months of trying to treat an infection that

> would not go away via oral antibiotics. After seeing my ENT he

told

> me there was an infection and that we had to treat it with drops.

I

> had continued on that and seen him after 6 months (today). He told

me

> of the possibility of Cholesteatoma, but said he wouldn't know for

> sure until the infection is cleared up. Well today the infection

is

> gone and he actually had to go in and pull out the dead skin cells

> from my ear....that was FUN! Not terribly painful, but most

> uncomfortable. He said that yes I do have Cholesteatoma, but we

need

> a CT scan to see how much damage it has caused. I have heard of

> facial paralysis and your taste changing, but that has not

happened

> to me so can I safely assume it is not as bad as some others?

>

> Any advice or tips would be much appreciated!

>

> Thanks,

> Amiee from Nova Scotia, Canada

>

[Guest guest]

It will probably last a month or two. I had the same thing, doc had

to severe my taste nerve on that side. Eventually the brain switches

to just using the nerve on the other side. The return of taste was a

gradual thing, but while it's gone amaze your friends and family by

eating really spicy food on that side of your mouth! :-)

Dave

>

> From: amieefromnscanada <amieewilson@ hotmail.com>

> Subject: Yet another person who was just diagnosed

with Cholesteatoma at age 29 (F)

> cholesteatoma

> Date: Thursday, September 18, 2008, 12:44 PM

>

>

>

>

> I have had ear problems since I was a young girl. I had multiple

> surgeries with tubes in and out in and out because of recurring ear

> infections. My left ear has been an issue all my life and I have

> moderate hearing loss since I was young. My right ear, thank

> goodness, is fine. As a young child I with all those surgeries they

> perforated my left ear drum and then grafted it. I have little

> feeling in that ear and my family doctor found out I had an

infection

> in my ear about 8-12 months ago on a routine check-up. I did not

know

> I had an infection since there is no feeling (no ear aches). I was

> sent to an ENT after 4 months of trying to treat an infection that

> would not go away via oral antibiotics. After seeing my ENT he told

> me there was an infection and that we had to treat it with drops. I

> had continued on that and seen him after 6 months (today). He told

me

> of the possibility of Cholesteatoma, but said he wouldn't know for

> sure until the infection is cleared up. Well today the infection is

> gone and he actually had to go in and pull out the dead skin cells

> from my ear....that was FUN! Not terribly painful, but most

> uncomfortable. He said that yes I do have Cholesteatoma, but we

need

> a CT scan to see how much damage it has caused. I have heard of

> facial paralysis and your taste changing, but that has not happened

> to me so can I safely assume it is not as bad as some others?

>

> Any advice or tips would be much appreciated!

>

> Thanks,

> Amiee from Nova Scotia, Canada

>

[Guest guest]

Dave,

I will be having surgery for a cholesteatoma next week. What can I

expect to feel like after surgery? I haven't had the surgery yet but

sure have a lot of fatigue - is this normal? Maybe it's stress that

I am not aware of. I flew on a plane to Nevada Jan. 1, 2008 and

developed bell's palsy it wasn't until 6 months later that it was

discovered I had a c-toma. I am glad I know what caused the bell's

palsy many people get it and don't know why. It took 3 months to

clear up but that is gone - hopefully when I have surgery the facial

paralysis will not return - it was awful. Hope you are much better

since your surgery!

>

> From: amieefromnscanada <amieewilson@ hotmail.com>

> Subject: Yet another person who was just diagnosed

with Cholesteatoma at age 29 (F)

> cholesteatoma

> Date: Thursday, September 18, 2008, 12:44 PM

>

>

>

>

> I have had ear problems since I was a young girl. I had multiple

> surgeries with tubes in and out in and out because of recurring ear

> infections. My left ear has been an issue all my life and I have

> moderate hearing loss since I was young. My right ear, thank

> goodness, is fine. As a young child I with all those surgeries they

> perforated my left ear drum and then grafted it. I have little

> feeling in that ear and my family doctor found out I had an

infection

> in my ear about 8-12 months ago on a routine check-up. I did not

know

> I had an infection since there is no feeling (no ear aches). I was

> sent to an ENT after 4 months of trying to treat an infection that

> would not go away via oral antibiotics. After seeing my ENT he told

> me there was an infection and that we had to treat it with drops. I

> had continued on that and seen him after 6 months (today). He told

me

> of the possibility of Cholesteatoma, but said he wouldn't know for

> sure until the infection is cleared up. Well today the infection is

> gone and he actually had to go in and pull out the dead skin cells

> from my ear....that was FUN! Not terribly painful, but most

> uncomfortable. He said that yes I do have Cholesteatoma, but we

need

> a CT scan to see how much damage it has caused. I have heard of

> facial paralysis and your taste changing, but that has not happened

> to me so can I safely assume it is not as bad as some others?

>

> Any advice or tips would be much appreciated!

>

> Thanks,

> Amiee from Nova Scotia, Canada

>

[Guest guest]

Hey Dave:

I just watched your video on YouTube, and it looks like Tyson tried

to bite your ear off, too! :-) You should get together with Evander

Holyfield and trade stories...

Surfin Dave

> >

> > From: amieefromnscanada <amieewilson@ hotmail.com>

> > Subject: Yet another person who was just

diagnosed

> with Cholesteatoma at age 29 (F)

> > cholesteatoma

> > Date: Thursday, September 18, 2008, 12:44 PM

> >

> >

> >

> >

> > I have had ear problems since I was a young girl. I had multiple

> > surgeries with tubes in and out in and out because of recurring

ear

> > infections. My left ear has been an issue all my life and I have

> > moderate hearing loss since I was young. My right ear, thank

> > goodness, is fine. As a young child I with all those surgeries

they

> > perforated my left ear drum and then grafted it. I have little

> > feeling in that ear and my family doctor found out I had an

> infection

> > in my ear about 8-12 months ago on a routine check-up. I did not

> know

> > I had an infection since there is no feeling (no ear aches). I

was

> > sent to an ENT after 4 months of trying to treat an infection

that

> > would not go away via oral antibiotics. After seeing my ENT he

told

> > me there was an infection and that we had to treat it with drops.

I

> > had continued on that and seen him after 6 months (today). He

told

> me

> > of the possibility of Cholesteatoma, but said he wouldn't know

for

> > sure until the infection is cleared up. Well today the infection

is

> > gone and he actually had to go in and pull out the dead skin

cells

> > from my ear....that was FUN! Not terribly painful, but most

> > uncomfortable. He said that yes I do have Cholesteatoma, but we

> need

> > a CT scan to see how much damage it has caused. I have heard of

> > facial paralysis and your taste changing, but that has not

happened

> > to me so can I safely assume it is not as bad as some others?

> >

> > Any advice or tips would be much appreciated!

> >

> > Thanks,

> > Amiee from Nova Scotia, Canada

> >

>