Re: When does a c-toma start growing?

[Guest guest]

---Adina,

Did your doctor mean your hearing loss would be a permanent

or a temporary issue after this surgery? I ask because perhaps your

doctor is doing the surgery in stages. Sometimes they have to.

Hopefully he means the loss will be temporary until then or until

the swelling, packing is removed, etc.

For your question about if the c-toma starts growing as soon

as the symptons occur. In my experience I have found out the c-toma

has reccured w/o having any symptons whatsoever. Perhaps thats

because I have such a lengthy history of c-toma. Then again I have

had the drainage & infections occur repeatedly & there have been no

signs of the c-toma. On another note I have went for an office visit

w/ what I thought to be just a mild infection & received the news I

needed more surgery & straight away.

I honestly don't know if there is an actual way of putting a

time as to when the c-toma starts. I just know in my case it seems

to grow like crazy once it starts.

As terrible as it is, what you have had happen seems to happen

alot. There are just not enough Doctors or ENT's who take c-toma

seriously or even know much about it. There is just way to much

ignorance & or a huge relectance for some doctors to even

acknowledge that c-toma might be present. Its quite disgusting & a

very state of affairs to know that even tho c-toma has been

assulting & affecting children & adults alike for many, many years,

the medical community still misdiagnoses it or just plain refuses to

take it seriously.

I get really steamed when I think of all the needless pain &

hearing loss people have undergone in their quest for help.

After all these years of my dealing w/ it I still get looks of

total dumbfoundness from other " specialty " doctors I have had to go

to & you have to give your medical history. Almost like the dark

ages !!!

Sorry to rant on but I do get irritated by the total lack of

concern from doctors when it comes to such a matter as our healthy

hearing.

I wish you lots of luck w/ your music.

kimi

In cholesteatoma , " adinahall " <adinahall@y...>

wrote:

> Hi everyone,

>

> Thankyou so much for your help and infomation regarding my balance

> and flying issues. I get my stitches out tomorrow(Jan 14th) I

don't

> know if my packing will be removed yet.

>

> I wonder if anyone knows if a c-toma starts growing as soon as the

> symptoms occur(eg drainage from ear)or is it years before any

> symptoms?? I remember the symptoms (drainage from ear) occurred in

> 1999 - and it then took another 3 years before my general doctor

> would refer me to an ENT. When I finally saw the ENT during 2002

and

> 2003 he never picked up I had a c-toma. I saw another ENT in OCT

> 2003 for my loss of voice and it was this new ENT who said I had a

c-

> toma which proved correct with CT scans in Nov 2003.

>

> I am a musician and music teacher, I need and want my hearing to

be

> normal! After operation to remove C-toma on Jan 5th,2004 the

doctor

> told me my hearing would be worse. If I wasn't a serious musician

> and music teacher I wouldn't be as upset about hearing loss.

>

> Does anyone think I may have a case for neglect against my local

> doctor and first ENT who kept on telling me at every visit that my

> ear was normal (even though I had constant drainage and a bad

> smell). At that time I always thought my ear can't be normal but I

> had soooo much faith in the first ENT. After all the ENT are the

> specialists!

>

> Thanks,

>

> Adina

[Guest guest]

I was able to fly about 3 months after my surgery. I had a partial

CWD and have tubes in both ears. For flying, there is nothing that

compares to having tubes!!! I was always in SO MUCH pain that I

hated flying. My ENT said that most commercial pilots have tubes in

their ears....interesting.

As for hearing, my news is bad news. Before the surgery, my ENT said

that I'd probably have MORE symptoms and more hearing loss after the

surgery but that a healthy ear was his first priority. Well, it's

true. My ear itches, hurts, and drains a whole lot more now. And my

hearing right after the surgery was worse than it had ever been. I

didn't have any reconstruction, mind you, but I do notice a

difference in my level of hearing. Since the surgery (about a year

ago) I have regained some of the lost hearing, but it isn't back to

the c-toma stage (which was already pretty bad). My c-toma was

acting as a conduit for sound and I had to have 1-1/2 bones in the

middle ear removed, so there isn't anything there to conduct the

sound.

To rattle on a little more, from the ages of 5-9 I has countless ear

tubes and a skin graft on my left eardrum. After that surgery my

(previous) ENT basically gave me a clean bill of health and said I'd

never have to go again. Obviously he was wrong. I doubt he is still

practicing, but I know what you mean about putting faith in the

experts only to learn that they probably didn't know what they were

talking about. Thank goodness for groups like this!

> In cholesteatoma , " adinahall " <adinahall@y...>

> wrote:

> > Hi everyone,

> >

> > Thankyou so much for your help and infomation regarding my

balance

> > and flying issues. I get my stitches out tomorrow(Jan 14th) I

> don't

> > know if my packing will be removed yet.

> >

> > I wonder if anyone knows if a c-toma starts growing as soon as

the

> > symptoms occur(eg drainage from ear)or is it years before any

> > symptoms?? I remember the symptoms (drainage from ear) occurred

in

> > 1999 - and it then took another 3 years before my general doctor

> > would refer me to an ENT. When I finally saw the ENT during 2002

> and

> > 2003 he never picked up I had a c-toma. I saw another ENT in OCT

> > 2003 for my loss of voice and it was this new ENT who said I had

a

> c-

> > toma which proved correct with CT scans in Nov 2003.

> >

> > I am a musician and music teacher, I need and want my hearing to

> be

> > normal! After operation to remove C-toma on Jan 5th,2004 the

> doctor

> > told me my hearing would be worse. If I wasn't a serious

musician

> > and music teacher I wouldn't be as upset about hearing loss.

> >

> > Does anyone think I may have a case for neglect against my local

> > doctor and first ENT who kept on telling me at every visit that

my

> > ear was normal (even though I had constant drainage and a bad

> > smell). At that time I always thought my ear can't be normal but

I

> > had soooo much faith in the first ENT. After all the ENT are the

> > specialists!

> >

> > Thanks,

> >

> > Adina

[Guest guest]

Hi Adina --

I very much sympathize with your music situation -- I am an organist

by college training, a former full-time pipe organ builder, and still

play for church weekly, although my primary " day job " is now in the

computer field. It's been pretty distressing to consider the

possibility of limited hearing when music is such a large part of

your life. " Beethoven did it " -- as people would tell me. Yep. But

he certainly wasn't happy about it.

My own experience is that your brain will make compensations as it

can, given the situation. I know that with tubes in the ears (or

other hole in the ear drum), there is limited perception of

frequencies below tenor C (C below middle c). But somehow, I still

heard them -- at least the harmonics. (My ENT is astounded at how I

can tell him what I hear and don't hear!) The one thing that really

caused a problem was when there was thick fluid behind the ear drum.

I would hear one pitch with one ear, and a different pitch with the

other (speed of sound through a fluid is different). Thankfully,

that didn't happen often!

Because I am no expert on ear situations other than my own, I can't

offer any advice other than hope. I wish you the very best -- keep

good thoughts about the music. I hope that over time (which seems to

be the one constant thread with EVERYTHING on this issue!), that you

will find that even though music may be different, it will still mean

the same -- they can't take your love of music away!

Max

> Hi everyone,

>

> Thankyou so much for your help and infomation regarding my balance

> and flying issues. I get my stitches out tomorrow(Jan 14th) I

don't

> know if my packing will be removed yet.

>

> I wonder if anyone knows if a c-toma starts growing as soon as the

> symptoms occur(eg drainage from ear)or is it years before any

> symptoms?? I remember the symptoms (drainage from ear) occurred in

> 1999 - and it then took another 3 years before my general doctor

> would refer me to an ENT. When I finally saw the ENT during 2002

and

> 2003 he never picked up I had a c-toma. I saw another ENT in OCT

> 2003 for my loss of voice and it was this new ENT who said I had a

c-

> toma which proved correct with CT scans in Nov 2003.

>

> I am a musician and music teacher, I need and want my hearing to be

> normal! After operation to remove C-toma on Jan 5th,2004 the doctor

> told me my hearing would be worse. If I wasn't a serious musician

> and music teacher I wouldn't be as upset about hearing loss.

>

> Does anyone think I may have a case for neglect against my local

> doctor and first ENT who kept on telling me at every visit that my

> ear was normal (even though I had constant drainage and a bad

> smell). At that time I always thought my ear can't be normal but I

> had soooo much faith in the first ENT. After all the ENT are the

> specialists!

>

> Thanks,

>

> Adina

[Guest guest]

Hello Adina,

I am also a musician dealing with c-toma. My right ear is affected

by c-toma. I have not had surgery yet, and I can't offer much

advice, but I do understand.

I have been playing alto sax since 5th grade (almost 18 years) and

guitar for 10 years. I played the sax in marching, concert, and jazz

bands in school, including college. My career does not involve

music, but it is still a very important part of my life. I have a

small recording studio in my home where I like to spend time playing,

recording, and listening.

My friends and family are supportive, but don't quite understand.

They tell me: " At least your left ear is fine " . Sure, but it's not

the same. My hearing loss is in the mid to low frequency range. I

can still hear to play, but when listening to music (which is where

my hearing loss really bothers me), I miss hearing the subtle things,

such as instrument placement in an orchestra, or the creativity of a

well thought out stereo mix. These things are hard to appreciate

when all you can hear on the right side are cymbals. (Surround sound

in the movies doesn't quite work either!)

Altough it is sometimes hard, I try to remember that there is more to

music than just sound. Even with my bad ear, the right music still

sends chills down my spine.

Best of luck to you!

Darin

> > Hi everyone,

> >

> > Thankyou so much for your help and infomation regarding my

balance

> > and flying issues. I get my stitches out tomorrow(Jan 14th) I

> don't

> > know if my packing will be removed yet.

> >

> > I wonder if anyone knows if a c-toma starts growing as soon as

the

> > symptoms occur(eg drainage from ear)or is it years before any

> > symptoms?? I remember the symptoms (drainage from ear) occurred

in

> > 1999 - and it then took another 3 years before my general doctor

> > would refer me to an ENT. When I finally saw the ENT during 2002

> and

> > 2003 he never picked up I had a c-toma. I saw another ENT in OCT

> > 2003 for my loss of voice and it was this new ENT who said I had

a

> c-

> > toma which proved correct with CT scans in Nov 2003.

> >

> > I am a musician and music teacher, I need and want my hearing to

be

> > normal! After operation to remove C-toma on Jan 5th,2004 the

doctor

> > told me my hearing would be worse. If I wasn't a serious musician

> > and music teacher I wouldn't be as upset about hearing loss.

> >

> > Does anyone think I may have a case for neglect against my local

> > doctor and first ENT who kept on telling me at every visit that

my

> > ear was normal (even though I had constant drainage and a bad

> > smell). At that time I always thought my ear can't be normal but

I

> > had soooo much faith in the first ENT. After all the ENT are the

> > specialists!

> >

> > Thanks,

> >

> > Adina