Re: Son with Cholesteatoma

[Guest guest]

The cholesteatoma will affect him only as much as he lets it affect

him. I mean, there are going to always be challenges but he doesn't

have to let them get to him.

I had my first surgery when I was seven and my second one when I was

fourteen. I've basically been unable to hear out of my left ear for as

long as I can remember. When I was little I really did let it get to

me. I was uncomfortable around other kids because I didn't want to ask

them to repeat things when I didn't hear them. I got made fun of a lot

when I said " what " and that has actually been something that has

followed me even to college. He may always have to talk to teachers

about sitting on the side of the classroom that favors his dominate

side and that sometimes throws alphabetically ordered classrooms out

of whack. In gym he may not be able to go swimming. Kids will tease

about those little things.

As I got older, though, I was less awkward even though my hearing got

progressively worse. I had about 50% hearing in my left ear after my

first surgery and then I lost basically all of it with my second

surgery. I've actually come to see it as convenient sometimes. Like, I

live in the second largest dorm on campus and when it's noisy I just

roll over and sleep on my right hear and I don't hear anything. I did

have to get a special alarm clock back in high school, though, because

I'd sleep through my alarms. So now I have one that shakes my bed to

wake me up. And I'm supposed to be eligable for disabilities

assistance and finacial aid though I just found out about it.

I had a hearing aide but I never wore it and I still don't wear it

because it was too bulky and it didn't allow ventilation so it causes

massive headaches. With the loss of only partial hearing it's not

really neccessary all the time. Usually there won't be a lot of

problems. My only problem in college (and, granted, I go to a small

school) is language because it's hard for me to " hear " the language.

Music became progressively harder for me Other than that, it hasn't

been too much of an issue.

It isn't that hard to adjust if you loose your hearing when you are

young. You learn which side of the class to sit on, you learn to

position yourself on the correct side of your group of friends, you

learn to compensate. And the people around you learn too.

Well, except my sisters. They still try to whisper into my left ear

and they put the phone up to my left ear even though I have been deaf

their entire life. =P

>

> Hi,

>

> I am new to the board and have a few questions regarding my son, who

> is 9, and was recently diagnosed with a cholesteatoma.

>

> He is scheduled to have a surgery in January. It will be through

> the canal, because the doctor does not think the cholesteatoma is

> that big.

>

> I am really concerned about the impact this will have on his life.

> He has lost about 50% of the hearing in his right ear and I hope

> that he will get most of it back.

>

> After reading some of these posts, I am not so sure that this will

> be the case. I am wondering what affects this will have on his

> life.

>

> I have rarely dealt with hard-of hearing people, and do not know

> what life is like for them. What if he needs a hearing aid. Will

> it be hard on him socially?

>

> I would really like to understand what he is going through so that I

> can know how to help him.

>

> Thanks so much,

>

> Ellen

>

[Guest guest]

Ellen,

I had my first surgery when I was 5... I've had hearing aids since the age of 8. They very rarely effected my social life. Most people don't even notice I have one. Yes I am a female and my hait could cover them, BUT I wear my hair back most of the time. Most kids his age will just be curious as to what he has in his ear and they may ask a lot of questions about it. Some of my friends even wanted to try it on to see if things sounded different or louder. I never experianced anyone being cruel to me because of my hearing aid. Give it time and let the Dr. do what needs to be done. Never think the worst will happen. Things may turn out a lot better then what you think.

I am now 25 and still have an active social life and get along just fine day to day with my hearing aid.

Best wishes to you and your son

Chasity

[Guest guest]

Ellen:

Maybe it's too early for you to be so pessimistic. A cholesteatoma

will degrade your heariing. The C-toma won't let your hearing bones

work properly which affects hearing. If there are infections too

present, this too will cause degraded hearing with fluid in the ear

that will reduce the sound waves. Your son's c-toma doesn't sound

that large if the doctor is saying he thinks that he can get this by

going through the ear canal. 9 weeks out of surgery for me and the

hearing in my c-toma ear is much much much better than before the

darn thing was removed. Give your son and the doctors a chance to

make things right.

I wish your son and you both the best of luck!!!

Mark

>

> Hi,

>

> I am new to the board and have a few questions regarding my son,

who

> is 9, and was recently diagnosed with a cholesteatoma.

>

> He is scheduled to have a surgery in January. It will be through

> the canal, because the doctor does not think the cholesteatoma is

> that big.

>

> I am really concerned about the impact this will have on his life.

> He has lost about 50% of the hearing in his right ear and I hope

> that he will get most of it back.

>

> After reading some of these posts, I am not so sure that this will

> be the case. I am wondering what affects this will have on his

> life.

>

> I have rarely dealt with hard-of hearing people, and do not know

> what life is like for them. What if he needs a hearing aid. Will

> it be hard on him socially?

>

> I would really like to understand what he is going through so that

I

> can know how to help him.

>

> Thanks so much,

>

> Ellen

>

[Guest guest]

Depending on the type of surgery and extent of the C'toma, your son's

hearing could improve. My son, who's 11 now, had a 70% loss before

surgery, 30% loss after his first surgery and now, after surgery #6

hears at 100%. He has a prosthetic ossicular chain and hears great.

He participates in all sports and makes straight A's. He's had 4

large C'toma's and is the picture of health.

I recommend seeing the best otologist you can find. If you're in the

southeastern U.S. I can recommend some. We used an ENT for years and

he helped us find the otologist.

C'toma will come back and the surgeon's ability to " get it all " is

key. Ask how many c'tomas they see per year. My ENT only sees about

3, my otologist sees over 300.

I could ramble for pages, but I know you've found lots of great info.

already on this site. Please know that you're not alone and C'toma

is a treatable condition if you stay on top of it. Good look to you

and your son.

If you'd like some dr. names in the south east, please email me and

I'll send some.

God Bless,

Sheri

[Guest guest]

Hi Sheri,

Thanks for sharing your story with me. I feel much more at rest now

about my son. I guess this kind of hit me as a big shock. But, now

that I've done some research into everything, I trust that

everything will work out fine. I guess I really just want to try

and understand what life is like for him. Hopefully, though, his

hearing will be corrected. I think I may look into finding an

otologist, as his current doctor is an ENT. I live in Wisconsin,

though, so if anyone knows any good otologists in Wisconsin or the

surrounding areas, please let me know.

Thanks again,

Ellen

>

> Depending on the type of surgery and extent of the C'toma, your

son's

> hearing could improve. My son, who's 11 now, had a 70% loss

before

> surgery, 30% loss after his first surgery and now, after surgery

#6

> hears at 100%. He has a prosthetic ossicular chain and hears

great.

>

> He participates in all sports and makes straight A's. He's had 4

> large C'toma's and is the picture of health.

>

> I recommend seeing the best otologist you can find. If you're in

the

> southeastern U.S. I can recommend some. We used an ENT for years

and

> he helped us find the otologist.

>

> C'toma will come back and the surgeon's ability to " get it all " is

> key. Ask how many c'tomas they see per year. My ENT only sees

about

> 3, my otologist sees over 300.

>

> I could ramble for pages, but I know you've found lots of great

info.

> already on this site. Please know that you're not alone and

C'toma

> is a treatable condition if you stay on top of it. Good look to

you

> and your son.

>

> If you'd like some dr. names in the south east, please email me

and

> I'll send some.

>

> God Bless,

> Sheri

>

[Guest guest]

Hi Ellen,

After reading the response from the young man who is deaf in his

left ear, I want to tell you something that nobody told me for

years. I still wonder why the surgeon or the audiologist didn't tell

me, but they didn't. Anyway, this is it... for children, losing

hearing in their RIGHT ear has a much bigger affect on them than

losing it in their LEFT. Besides the fact that the people who should

have told me this didn't, I have an Uncle deaf in his left ear since

his teens who told me it made very little difference in his life so,

with that expectation, I didn't really worry about my son or look

for ways to help him. I assumed he would be fine, but that was

incorrect because his age and that it was his RIGHT ear made things

very different for my son than they were for my uncle.

My son lost his hearing in his right ear when he was two, and your

son is 9, so it won't be as bad for your son as it was for mine. But

the problem is that, in children, the ears are specialized for

different functions. This evens out in puberty, when both ears

become able to do all the jobs.

In a child, the right ear is the " learning ear. " The sound coming in

the right ear crosses over to the left-side, language processing

centers of the brain. When a child loses hearing in the right ear at

a young age, those language processing centers don't get the

stimulation that they need to develop properly. In my son's case,

like yours, he could already speak very clearly so the problem

wasn't identified for awhile until, by 2nd grade, he still wasn't

learning a thing at school, couldn't read at all. He didn't get his

hearing aid until he was 7 and then we still weren't told that he

had to wear it ALL the time. That he actually needed to develop a

new neural path to interpret the sound correctly; so I was letting

him just wear it to school then take it off at home.

The right ear is also the ear that a child uses to filter out

background noise (wierd, huh?) so, even with a hearing aid,

background noise in the classroom can be a real problem if the aided

ear is the right ear.

And you won't believe who we learned all this from...FINALLY, the

audiologist suggested that we contact SCOE (Sonoma County Office of

Education) because they provided special services for children with

hearing problems to be sure they were hearing/learning in the

classroom. Sure enough, SCOE has a whole Deaf & Hard of Hearing

Services department and it was the lady from SCOE, assigned to my

son, who taught me SO much about how to help him at home and in the

classroom.

So, what I would recommend is get the hearing aid as soon as

possible, wear it all the time. Nobody teased my son about his

hearing aid, although he did still feel a little self-conscious but,

once I realized how much his education depended on it, it was not a

negotiable issue anyway. I would have home-schooled him if I had to

because, I am not kidding, he was learning NOTHING at school until

he got his hearing aid, and his left ear was hearing perfectly the

whole time. This year we moved him into a very small private school

related to our church (10 students, 3 teachers) and he is doing

GREAT and loving school. In our area, even in a private school, the

county provides these services to hard of hearing children so we

still get help from them, with special equipment for the classroom,

lessons on how to care for the hearing aid, and helping him to

understand and " own " his hearing issues himself, a little lip-

reading, how best to position himself in the class, on field trips,

all kinds of things. It's amazing. So, get in touch with the Office

of Education in your area and see how they can help you. I am very

grateful for all that we have learned from them.

My son has made lots of improvement but it pains me to look back and

realize all the times he has, for example, gotten into trouble

because, even though he HEARD what was said, he didn't UNDERSTAND it

correctly and the people around him didn't realize that was what the

issue was. They knew he could hear but he didn't respond, so he must

be naughty, rebellious, obstinate! He still has trouble with

symbolic speech, words with multiple meanings, or colloquialisms

that don't really mean what they say (you know, like... " run that up

the flag pole " ... he wants to know who is running what up the flag

pole?).

Your son is older so he may skip most of this, as a lot more of his

language processing was in place before he lost the hearing, BUT he

isn't past puberty yet so he will have some " right ear " issues. You

should get in touch with some people who provide services for the

deaf, somehow. If your county doesn't have the same services that

SCOE has, see if there are any ASL language teachers in your area

and start asking for names of people who help hard of hearing

children with learning issues. Those are the people who will be able

to help you help your son.

Good luck!

Marie

>

> Hi,

>

> I am new to the board and have a few questions regarding my son,

who

> is 9, and was recently diagnosed with a cholesteatoma.

>

> He is scheduled to have a surgery in January. It will be through

> the canal, because the doctor does not think the cholesteatoma is

> that big.

>

> I am really concerned about the impact this will have on his

life.

> He has lost about 50% of the hearing in his right ear and I hope

> that he will get most of it back.

>

> After reading some of these posts, I am not so sure that this will

> be the case. I am wondering what affects this will have on his

> life.

>

> I have rarely dealt with hard-of hearing people, and do not know

> what life is like for them. What if he needs a hearing aid. Will

> it be hard on him socially?

>

> I would really like to understand what he is going through so that

I

> can know how to help him.

>

> Thanks so much,

>

> Ellen

>

[Guest guest]

Wow, I completely forgot that your son will probably get prosthesis.

My son couldn't have them because the surgeon scraped the bone

really hard trying to get all the ctoma (and he did) but it caused a

bone spur to grow over the opening to the inner ear. But that's

rare, so you probably won't have to deal with any of those right ear

issues. Oh well, it felt good to get it off my chest! :-)

Marie

> >

> > Depending on the type of surgery and extent of the C'toma, your

> son's

> > hearing could improve. My son, who's 11 now, had a 70% loss

> before

> > surgery, 30% loss after his first surgery and now, after surgery

> #6

> > hears at 100%. He has a prosthetic ossicular chain and hears

> great.

> >

> > He participates in all sports and makes straight A's. He's had

4

> > large C'toma's and is the picture of health.

> >

> > I recommend seeing the best otologist you can find. If you're

in

> the

> > southeastern U.S. I can recommend some. We used an ENT for

years

> and

> > he helped us find the otologist.

> >

> > C'toma will come back and the surgeon's ability to " get it all "

is

> > key. Ask how many c'tomas they see per year. My ENT only sees

> about

> > 3, my otologist sees over 300.

> >

> > I could ramble for pages, but I know you've found lots of great

> info.

> > already on this site. Please know that you're not alone and

> C'toma

> > is a treatable condition if you stay on top of it. Good look to

> you

> > and your son.

> >

> > If you'd like some dr. names in the south east, please email me

> and

> > I'll send some.

> >

> > God Bless,

> > Sheri

> >

>

[Guest guest]

Marie,

This is so interesting. Thanks for posting this very important

information. I don't know when I will need it, but it is really gtood

to know.

> Hi Ellen,

>

> After reading the response from the young man who is deaf in his

> left ear, I want to tell you something that nobody told me for

> years. I still wonder why the surgeon or the audiologist didn't tell

> me, but they didn't. Anyway, this is it... for children, losing

> hearing in their RIGHT ear has a much bigger affect on them than

> losing it in their LEFT. Besides the fact that the people who should

> have told me this didn't, I have an Uncle deaf in his left ear since

> his teens who told me it made very little difference in his life so,

> with that expectation, I didn't really worry about my son or look

> for ways to help him. I assumed he would be fine, but that was

> incorrect because his age and that it was his RIGHT ear made things

> very different for my son than they were for my uncle.

>

> My son lost his hearing in his right ear when he was two, and your

> son is 9, so it won't be as bad for your son as it was for mine. But

> the problem is that, in children, the ears are specialized for

> different functions. This evens out in puberty, when both ears

> become able to do all the jobs.

>

> In a child, the right ear is the " learning ear. " The sound coming in

> the right ear crosses over to the left-side, language processing

> centers of the brain. When a child loses hearing in the right ear at

> a young age, those language processing centers don't get the

> stimulation that they need to develop properly. In my son's case,

> like yours, he could already speak very clearly so the problem

> wasn't identified for awhile until, by 2nd grade, he still wasn't

> learning a thing at school, couldn't read at all. He didn't get his

> hearing aid until he was 7 and then we still weren't told that he

> had to wear it ALL the time. That he actually needed to develop a

> new neural path to interpret the sound correctly; so I was letting

> him just wear it to school then take it off at home.

>

> The right ear is also the ear that a child uses to filter out

> background noise (wierd, huh?) so, even with a hearing aid,

> background noise in the classroom can be a real problem if the aided

> ear is the right ear.

>

> And you won't believe who we learned all this from...FINALLY, the

> audiologist suggested that we contact SCOE (Sonoma County Office of

> Education) because they provided special services for children with

> hearing problems to be sure they were hearing/learning in the

> classroom. Sure enough, SCOE has a whole Deaf & Hard of Hearing

> Services department and it was the lady from SCOE, assigned to my

> son, who taught me SO much about how to help him at home and in the

> classroom.

>

> So, what I would recommend is get the hearing aid as soon as

> possible, wear it all the time. Nobody teased my son about his

> hearing aid, although he did still feel a little self-conscious but,

> once I realized how much his education depended on it, it was not a

> negotiable issue anyway. I would have home-schooled him if I had to

> because, I am not kidding, he was learning NOTHING at school until

> he got his hearing aid, and his left ear was hearing perfectly the

> whole time. This year we moved him into a very small private school

> related to our church (10 students, 3 teachers) and he is doing

> GREAT and loving school. In our area, even in a private school, the

> county provides these services to hard of hearing children so we

> still get help from them, with special equipment for the classroom,

> lessons on how to care for the hearing aid, and helping him to

> understand and " own " his hearing issues himself, a little lip-

> reading, how best to position himself in the class, on field trips,

> all kinds of things. It's amazing. So, get in touch with the Office

> of Education in your area and see how they can help you. I am very

> grateful for all that we have learned from them.

>

> My son has made lots of improvement but it pains me to look back and

> realize all the times he has, for example, gotten into trouble

> because, even though he HEARD what was said, he didn't UNDERSTAND it

> correctly and the people around him didn't realize that was what the

> issue was. They knew he could hear but he didn't respond, so he must

> be naughty, rebellious, obstinate! He still has trouble with

> symbolic speech, words with multiple meanings, or colloquialisms

> that don't really mean what they say (you know, like... " run that up

> the flag pole " ... he wants to know who is running what up the flag

> pole?).

>

> Your son is older so he may skip most of this, as a lot more of his

> language processing was in place before he lost the hearing, BUT he

> isn't past puberty yet so he will have some " right ear " issues. You

> should get in touch with some people who provide services for the

> deaf, somehow. If your county doesn't have the same services that

> SCOE has, see if there are any ASL language teachers in your area

> and start asking for names of people who help hard of hearing

> children with learning issues. Those are the people who will be able

> to help you help your son.

>

> Good luck!

>

> Marie

>

>

>

>

> >

> > Hi,

> >

> > I am new to the board and have a few questions regarding my son,

> who

> > is 9, and was recently diagnosed with a cholesteatoma.

> >

> > He is scheduled to have a surgery in January. It will be through

> > the canal, because the doctor does not think the cholesteatoma is

> > that big.

> >

> > I am really concerned about the impact this will have on his

> life.

> > He has lost about 50% of the hearing in his right ear and I hope

> > that he will get most of it back.

> >

> > After reading some of these posts, I am not so sure that this will

> > be the case. I am wondering what affects this will have on his

> > life.

> >

> > I have rarely dealt with hard-of hearing people, and do not know

> > what life is like for them. What if he needs a hearing aid. Will

> > it be hard on him socially?

> >

> > I would really like to understand what he is going through so that

> I

> > can know how to help him.

> >

> > Thanks so much,

> >

> > Ellen

> >

>

[Guest guest]

Hi Marie,

Thanks so much for this information. I will indeed seek into

getting some professional help for my son now. I am glad I found

this forum, because it seems like the audiologists and doctors don't

offer much help beyond the correctional devices. They don't tell

you information like this or much of anything. In fact, all they

really told me is that he'd have issues hearing in noisy situations.

My son was having language issues, though, and now I can see

why. I found an interesting article online that discussed the

importance of hearing with both ears. I guess that both ears are

connected to the opposite hemispheres and are both very important.

This certainly goes a lot farther than just not being able to hear

in noisy environments.

In the article, it said that the right hemisphere is important

for hearing emotions and figuring out the deeper meanings in the

tone of a person's words. The left side is basically the language

center and helps with logic. So, I can see why both sides are so

important in proper language development.

So, thanks for this new information. I will definitely see that

my son has his other ear amplified soon, if not before his surgery

in January. Thanks again!

Ellen

> >

> > Hi,

> >

> > I am new to the board and have a few questions regarding my son,

> who

> > is 9, and was recently diagnosed with a cholesteatoma.

> >

> > He is scheduled to have a surgery in January. It will be

through

> > the canal, because the doctor does not think the cholesteatoma

is

> > that big.

> >

> > I am really concerned about the impact this will have on his

> life.

> > He has lost about 50% of the hearing in his right ear and I hope

> > that he will get most of it back.

> >

> > After reading some of these posts, I am not so sure that this

will

> > be the case. I am wondering what affects this will have on his

> > life.

> >

> > I have rarely dealt with hard-of hearing people, and do not know

> > what life is like for them. What if he needs a hearing aid.

Will

> > it be hard on him socially?

> >

> > I would really like to understand what he is going through so

that

> I

> > can know how to help him.

> >

> > Thanks so much,

> >

> > Ellen

> >

>

[Guest guest]

Hi Ellen,

You'll discover other " funny " stuff about life with one hearing

ear... for example, with one ear, you only process the loudest sound

going. You don't get stereo and can't interpret 2 sounds at the same

time. This leads to odd situations that it might take you awhile to

figure out. Like, we would be driving in the car with the radio on,

not too loud, and Curtis would start to complain that it WAS too

loud. This seemed really strange to me because it wasn't too loud to

me and his sister and we could both hear BETTER than him, so you

would think it would sound too loud to us FIRST. But, this happened

several times before I finally realized he thought the radio was too

loud because he couldn't hear what his sister and I were talking

about while the radio was on.

It is interesting what you said about the right hemisphere being for

hearing emotions and deeper meanings in people's words because my

son, who only heard out of his left ear (left ear-right hemisphere)

from age 2 - 7, is way beyond his years in emotional sensitivity,

awareness, and wisdom regarding how to handle this emotional info he

picks up. I always thought it was the " character development " that

suffering brings (!), but now I can see another explanation.

One more thing...and I can see you are already on to this...don't

wait for the hearing aid at all. I thought I had to wait until the

hearing was " settled, " meaning staying the same (because between

surgeries Curtis' hearing varied...when the ctoma was big, it

conducted sound in place of the hearing bones it had destroyed).

But, Curtis has a digital hearing aid anyway, which can be easily

reprogrammed as/if the hearing changes. We could have got it way

sooner and just had it reprogrammed (but I didn't know all this and

nobody, not even the surgeon, said a word about it). So don't let

any concern about the changing nature of his condition stop you from

getting his hearing aid as soon as possible.

Marie

> > >

> > > Hi,

> > >

> > > I am new to the board and have a few questions regarding my

son,

> > who

> > > is 9, and was recently diagnosed with a cholesteatoma.

> > >

> > > He is scheduled to have a surgery in January. It will be

> through

> > > the canal, because the doctor does not think the cholesteatoma

> is

> > > that big.

> > >

> > > I am really concerned about the impact this will have on his

> > life.

> > > He has lost about 50% of the hearing in his right ear and I

hope

> > > that he will get most of it back.

> > >

> > > After reading some of these posts, I am not so sure that this

> will

> > > be the case. I am wondering what affects this will have on

his

> > > life.

> > >

> > > I have rarely dealt with hard-of hearing people, and do not

know

> > > what life is like for them. What if he needs a hearing aid.

> Will

> > > it be hard on him socially?

> > >

> > > I would really like to understand what he is going through so

> that

> > I

> > > can know how to help him.

> > >

> > > Thanks so much,

> > >

> > > Ellen

> > >

> >

>

[Guest guest]

Sometimes you can't get the hearing aid because the ear canal isn't

ready yet (not dry and healed). But you can always get an FM system

from the school. Definitely request one. Also, make sure to request

that your child be certified as hearing impaired *before* getting a

hearing aid. If they determine he needs an aid to hear in class, they

need to pay for it. Also, if you wait until after you have paid for

the hearing aid, they can then test your son with the aid and say he

doesn't need help now and doesn't qualify for services (this also

happens to cochlear implant kids sometimes). Sorry for being

draconian, but we've unfortunately suffered from being too naive. To

end on a positive note, our kid's cholesteatoma seems to be gone,

gone, gone with a first surgery. The reconstruction didn't work, but

the otologist has hope for new technologies once my child has outgrown

her " pediatric ear. "

> > > >

> > > > Hi,

> > > >

> > > > I am new to the board and have a few questions regarding my

> son,

> > > who

> > > > is 9, and was recently diagnosed with a cholesteatoma.

> > > >

> > > > He is scheduled to have a surgery in January. It will be

> > through

> > > > the canal, because the doctor does not think the cholesteatoma

> > is

> > > > that big.

> > > >

> > > > I am really concerned about the impact this will have on his

> > > life.

> > > > He has lost about 50% of the hearing in his right ear and I

> hope

> > > > that he will get most of it back.

> > > >

> > > > After reading some of these posts, I am not so sure that this

> > will

> > > > be the case. I am wondering what affects this will have on

> his

> > > > life.

> > > >

> > > > I have rarely dealt with hard-of hearing people, and do not

> know

> > > > what life is like for them. What if he needs a hearing aid.

> > Will

> > > > it be hard on him socially?

> > > >

> > > > I would really like to understand what he is going through so

> > that

> > > I

> > > > can know how to help him.

> > > >

> > > > Thanks so much,

> > > >

> > > > Ellen

> > > >

> > >

> >

>

[Guest guest]

Hi Ellen,

We went with Dr. Millen in Hales Corners (Milwaukee). My 4

year old son Brock had his surgery on October 27th. The surgery went

well, no hearing loss. You might want to check out Dr. Millen.

---- Original Message ----

From: ellenmelonmarie@...

cholesteatoma

Subject: Re: Son with Cholesteatoma

Date: Fri, 08 Dec 2006 06:02:51 -0000

>Hi Sheri,

>

>Thanks for sharing your story with me. I feel much more at rest now

>about my son. I guess this kind of hit me as a big shock. But, now

>that I've done some research into everything, I trust that

>everything will work out fine. I guess I really just want to try

>and understand what life is like for him. Hopefully, though, his

>hearing will be corrected. I think I may look into finding an

>otologist, as his current doctor is an ENT. I live in Wisconsin,

>though, so if anyone knows any good otologists in Wisconsin or the

>surrounding areas, please let me know.

>

>Thanks again,

>

>Ellen

>

>

>

>

>

>>

>> Depending on the type of surgery and extent of the C'toma, your

>son's

>> hearing could improve. My son, who's 11 now, had a 70% loss

>before

>> surgery, 30% loss after his first surgery and now, after surgery

>#6

>> hears at 100%. He has a prosthetic ossicular chain and hears

>great.

>>

>> He participates in all sports and makes straight A's. He's had 4

>> large C'toma's and is the picture of health.

>>

>> I recommend seeing the best otologist you can find. If you're in

>the

>> southeastern U.S. I can recommend some. We used an ENT for years

>and

>> he helped us find the otologist.

>>

>> C'toma will come back and the surgeon's ability to " get it all " is

>> key. Ask how many c'tomas they see per year. My ENT only sees

>about

>> 3, my otologist sees over 300.

>>

>> I could ramble for pages, but I know you've found lots of great

>info.

>> already on this site. Please know that you're not alone and

>C'toma

>> is a treatable condition if you stay on top of it. Good look to

>you

>> and your son.

>>

>> If you'd like some dr. names in the south east, please email me

>and

>> I'll send some.

>>

>> God Bless,

>> Sheri

>>

>

>