Re: ctoma has been gone 2 years but something strange has popped up...?

[Guest guest]

Marie,

I am new to ctomas. However, I had an ear canal infection for about

two months before my ctoma was discovered. Never in that time did I

have pain when pressing on or manipulating my ear from the outside.

In fact, I only had a little pain sometimes when my ear was vacuumed

out.

What I do know about ctomas is, they produce a lot of keratin, which

is a white, slightly shiny substance (basically dead skin). Since my

ctoma is a rare kind that formed in the side of my ear canal (no

eardrum involvement), I actually get keratin building up in my ear

canal that the doc removes (until my surgery in Feb.). But surely

your doc would have recognized that? So maybe the white goo is

something else, or maybe your doc is just missing something because

your son's eardrum looks fine.

Also, did the doc do a culture on the discharge? My doc did that and

found out I had a staph infection, so we had to change antibiotics

and ear drops to get it under control.

Bottom line, I would definitely take him to another doctor for a

second opinion. Trust your mother's intuition!

>

> Hi,

>

> I haven't been on this list in awhile. My son, Curtis, was

diagnosed

> with ctoma when he was 3, then had multiple surgeries, but it kept

> coming back. Finally, a surgeon removed his tonsils and adenoids to

> get a more normal air flow into the middle ear, which he said would

> decrease the chance of regrowth. In my son's case this seemed to

> work. He's 9 1/2 now and it has been 2 years since the last

surgery.

> The doc says she can't see any sign of ctoma reoccurring.

>

> However, something weird is going on... In August, we went to Lake

> Tahoe and we were careful but he got a little lake water in his

ear.

> It was treated and seemed to go away, although he continued to

> sniffle. Later it turned out that the lake bacteria had maybe moved

> to his sinuses and he had some antibiotics, which cleared up the

> sniffling. Partway through the antibiotic treatment, he got a cold

> which got the ear going again. Since that time, the ear is

> strange... there is this white goo accumulating in it. It doesn't

> smell bad, it isn't yellow, it doesn't hurt. I took him in and the

> surgeon vacumned out the goo to look inside. She said it looked

> okay, didn't look like the goo was coming from the middle ear. But

> she also didn't think it was an infection of the ear canal because,

> while it did hurt way more than normal when she put the little

> vacumn in his ear, it didn't hurt at all when she had him press

> towards his ear, from right in front of the ear. She said that

would

> hurt alot if it was the ear canal.

>

> In the end, she told me something was going on, but she didn't know

> what it was! She was going to leave it up to my mother's intuition!

> She offered either more antibiotics or we could take dairy out of

> his diet and see if that helped. He hasn't had dairy products for 6

> days now and the vacumming took place 1 week ago, but his ear is

> continuing to slowly fill up with this white goo again!

>

> Have any of you had this before or heard of it? What do you all

> think? My mother's intuition is saying it IS an ear canal

infection,

> although I don't know why it doesn't hurt.

>

> Thanks for your help,

> Marie

>

[Guest guest]

,

Thanks so much! Especially for the advice about culturing the

discharge...that sounds so basic, why didn't she just do it? *sigh*

I'm also interested/scared by what you say of the cholesteatoma in

the ear canal... because one thing that I have noticed is that the

shape of Curtis' ear canal is a little different than it used to be,

as if it is swollen (consistent with infection) but only swollen on

one side. When I look in his ear now...it's like I have to strain to

see around a corner in order to see all the way to the ear drum (or

what's left of it anyway). Even the doctor noticed and commented on

this " corner, " although she didn't seem to realize it was a change

or draw any conclusies from it (but it made me start noticing it

more).

Can you tell me how your " ear canal ctoma " was diagnosed? What kind

of surgery are they going to do for this?

Thanks,

Laurel

> >

> > Hi,

> >

> > I haven't been on this list in awhile. My son, Curtis, was

> diagnosed

> > with ctoma when he was 3, then had multiple surgeries, but it

kept

> > coming back. Finally, a surgeon removed his tonsils and adenoids

to

> > get a more normal air flow into the middle ear, which he said

would

> > decrease the chance of regrowth. In my son's case this seemed to

> > work. He's 9 1/2 now and it has been 2 years since the last

> surgery.

> > The doc says she can't see any sign of ctoma reoccurring.

> >

> > However, something weird is going on... In August, we went to

Lake

> > Tahoe and we were careful but he got a little lake water in his

> ear.

> > It was treated and seemed to go away, although he continued to

> > sniffle. Later it turned out that the lake bacteria had maybe

moved

> > to his sinuses and he had some antibiotics, which cleared up the

> > sniffling. Partway through the antibiotic treatment, he got a

cold

> > which got the ear going again. Since that time, the ear is

> > strange... there is this white goo accumulating in it. It

doesn't

> > smell bad, it isn't yellow, it doesn't hurt. I took him in and

the

> > surgeon vacumned out the goo to look inside. She said it looked

> > okay, didn't look like the goo was coming from the middle ear.

But

> > she also didn't think it was an infection of the ear canal

because,

> > while it did hurt way more than normal when she put the little

> > vacumn in his ear, it didn't hurt at all when she had him press

> > towards his ear, from right in front of the ear. She said that

> would

> > hurt alot if it was the ear canal.

> >

> > In the end, she told me something was going on, but she didn't

know

> > what it was! She was going to leave it up to my mother's

intuition!

> > She offered either more antibiotics or we could take dairy out

of

> > his diet and see if that helped. He hasn't had dairy products

for 6

> > days now and the vacumming took place 1 week ago, but his ear is

> > continuing to slowly fill up with this white goo again!

> >

> > Have any of you had this before or heard of it? What do you all

> > think? My mother's intuition is saying it IS an ear canal

> infection,

> > although I don't know why it doesn't hurt.

> >

> > Thanks for your help,

> > Marie

> >

>

[Guest guest]

Marie,

I had surgery on both ears about 20 years ago because my eardrums

were perforated due to repeated infections. All was fine since then,

the only thing I noticed is that my ears popped an awful lot and

seemed to get " plugged up " easily. A couple of months ago, I started

having drainage from my right ear. After seeing me a few times to

clean it, the ENT noticed what he said looked like a cyst in my ear

canal, which was later confirmed by a CT scan. He mentioned the

possibility of a ctoma, and referred me to an otologist to make

sure. I had to wait 6 weeks to see the otologist, and in that time,

the cyst actually came open due to the infection (again, no pain),

and the ENT removed loads of ketarin from my ear. Meanwhile we

figured out the infection was due to staph and got that under

control. When I saw the otologist, he told me it was a ctoma, he

said it was a rare type that actually forms in the ear canals and

doesn't involve the eardrum. He felt that it was likely a byproduct

of the surgery I had 20 years ago. However, given what I've read

about eustachian tube dysfunction and its role in the development of

ctomas, I'm not sure. Maybe both played a role.

At any rate, I think what happened is the ctoma was pushing into my

mastoid, but also pushing up and forming a cyst into my ear canal.

When the otologist examined me, he actually pushed through the ctoma

into the mastoid and removed some more (bloody) keratin. (It did

hurt a bit, then). I'm scheduled to have what he said will likely be

canal wall down surgery in February.

With your son's history and with what you describe, definitely get

it looked at by an experienced otologist, and raise the possibility

of this type of ctoma. It could be that the person you're seeing now

doesn't have experience with this type of ctoma. I'm not saying

that's what your son has, but if it is, it might not be recognized

by someone who hasn't seen it before, especially if there's a cyst

on it like mine.

Hope this helps.

shawn

> > >

> > > Hi,

> > >

> > > I haven't been on this list in awhile. My son, Curtis, was

> > diagnosed

> > > with ctoma when he was 3, then had multiple surgeries, but it

> kept

> > > coming back. Finally, a surgeon removed his tonsils and

adenoids

> to

> > > get a more normal air flow into the middle ear, which he said

> would

> > > decrease the chance of regrowth. In my son's case this seemed

to

> > > work. He's 9 1/2 now and it has been 2 years since the last

> > surgery.

> > > The doc says she can't see any sign of ctoma reoccurring.

> > >

> > > However, something weird is going on... In August, we went to

> Lake

> > > Tahoe and we were careful but he got a little lake water in

his

> > ear.

> > > It was treated and seemed to go away, although he continued to

> > > sniffle. Later it turned out that the lake bacteria had maybe

> moved

> > > to his sinuses and he had some antibiotics, which cleared up

the

> > > sniffling. Partway through the antibiotic treatment, he got a

> cold

> > > which got the ear going again. Since that time, the ear is

> > > strange... there is this white goo accumulating in it. It

> doesn't

> > > smell bad, it isn't yellow, it doesn't hurt. I took him in and

> the

> > > surgeon vacumned out the goo to look inside. She said it

looked

> > > okay, didn't look like the goo was coming from the middle ear.

> But

> > > she also didn't think it was an infection of the ear canal

> because,

> > > while it did hurt way more than normal when she put the little

> > > vacumn in his ear, it didn't hurt at all when she had him

press

> > > towards his ear, from right in front of the ear. She said that

> > would

> > > hurt alot if it was the ear canal.

> > >

> > > In the end, she told me something was going on, but she didn't

> know

> > > what it was! She was going to leave it up to my mother's

> intuition!

> > > She offered either more antibiotics or we could take dairy out

> of

> > > his diet and see if that helped. He hasn't had dairy products

> for 6

> > > days now and the vacumming took place 1 week ago, but his ear

is

> > > continuing to slowly fill up with this white goo again!

> > >

> > > Have any of you had this before or heard of it? What do you

all

> > > think? My mother's intuition is saying it IS an ear canal

> > infection,

> > > although I don't know why it doesn't hurt.

> > >

> > > Thanks for your help,

> > > Marie

> > >

> >

>

[Guest guest]

,

thanks for the info. I did take Curtis to get a culture of the ear

canal discharge, although we went to the pediatrician's office so as

to get it done sooner. That might have been a mistake though,

because the NP was afraid to go too deep in the ear (where the most

goo was) with a Q-tip amd said she might not have gotten enough.

Well, I thought...if it comes back negative, I'll make an appt for

the ENT to do it, even though we will have to wait longer.

MEANWHILE, strangely, the discharge seems to be slowing down to

stopping!? I'm glad but confused... I don't know what it was from,

or why it is stopping? Did you find that your discharge went through

greater and lesser phases?

Marie

> > > >

> > > > Hi,

> > > >

> > > > I haven't been on this list in awhile. My son, Curtis, was

> > > diagnosed

> > > > with ctoma when he was 3, then had multiple surgeries, but

it

> > kept

> > > > coming back. Finally, a surgeon removed his tonsils and

> adenoids

> > to

> > > > get a more normal air flow into the middle ear, which he

said

> > would

> > > > decrease the chance of regrowth. In my son's case this

seemed

> to

> > > > work. He's 9 1/2 now and it has been 2 years since the last

> > > surgery.

> > > > The doc says she can't see any sign of ctoma reoccurring.

> > > >

> > > > However, something weird is going on... In August, we went

to

> > Lake

> > > > Tahoe and we were careful but he got a little lake water in

> his

> > > ear.

> > > > It was treated and seemed to go away, although he continued

to

> > > > sniffle. Later it turned out that the lake bacteria had

maybe

> > moved

> > > > to his sinuses and he had some antibiotics, which cleared up

> the

> > > > sniffling. Partway through the antibiotic treatment, he got

a

> > cold

> > > > which got the ear going again. Since that time, the ear is

> > > > strange... there is this white goo accumulating in it. It

> > doesn't

> > > > smell bad, it isn't yellow, it doesn't hurt. I took him in

and

> > the

> > > > surgeon vacumned out the goo to look inside. She said it

> looked

> > > > okay, didn't look like the goo was coming from the middle

ear.

> > But

> > > > she also didn't think it was an infection of the ear canal

> > because,

> > > > while it did hurt way more than normal when she put the

little

> > > > vacumn in his ear, it didn't hurt at all when she had him

> press

> > > > towards his ear, from right in front of the ear. She said

that

> > > would

> > > > hurt alot if it was the ear canal.

> > > >

> > > > In the end, she told me something was going on, but she

didn't

> > know

> > > > what it was! She was going to leave it up to my mother's

> > intuition!

> > > > She offered either more antibiotics or we could take dairy

out

> > of

> > > > his diet and see if that helped. He hasn't had dairy

products

> > for 6

> > > > days now and the vacumming took place 1 week ago, but his

ear

> is

> > > > continuing to slowly fill up with this white goo again!

> > > >

> > > > Have any of you had this before or heard of it? What do you

> all

> > > > think? My mother's intuition is saying it IS an ear canal

> > > infection,

> > > > although I don't know why it doesn't hurt.

> > > >

> > > > Thanks for your help,

> > > > Marie

> > > >

> > >

> >

>

[Guest guest]

I had discharge from an ear canal infection, and there were times

when it was better or worse (even before starting ear drops). Then

there was the keratin, but that wasn't so much like discharge, as

big pieces of stuff like skin that would come out now and then.

> > > > >

> > > > > Hi,

> > > > >

> > > > > I haven't been on this list in awhile. My son, Curtis, was

> > > > diagnosed

> > > > > with ctoma when he was 3, then had multiple surgeries, but

> it

> > > kept

> > > > > coming back. Finally, a surgeon removed his tonsils and

> > adenoids

> > > to

> > > > > get a more normal air flow into the middle ear, which he

> said

> > > would

> > > > > decrease the chance of regrowth. In my son's case this

> seemed

> > to

> > > > > work. He's 9 1/2 now and it has been 2 years since the

last

> > > > surgery.

> > > > > The doc says she can't see any sign of ctoma reoccurring.

> > > > >

> > > > > However, something weird is going on... In August, we went

> to

> > > Lake

> > > > > Tahoe and we were careful but he got a little lake water

in

> > his

> > > > ear.

> > > > > It was treated and seemed to go away, although he

continued

> to

> > > > > sniffle. Later it turned out that the lake bacteria had

> maybe

> > > moved

> > > > > to his sinuses and he had some antibiotics, which cleared

up

> > the

> > > > > sniffling. Partway through the antibiotic treatment, he

got

> a

> > > cold

> > > > > which got the ear going again. Since that time, the ear is

> > > > > strange... there is this white goo accumulating in it. It

> > > doesn't

> > > > > smell bad, it isn't yellow, it doesn't hurt. I took him in

> and

> > > the

> > > > > surgeon vacumned out the goo to look inside. She said it

> > looked

> > > > > okay, didn't look like the goo was coming from the middle

> ear.

> > > But

> > > > > she also didn't think it was an infection of the ear canal

> > > because,

> > > > > while it did hurt way more than normal when she put the

> little

> > > > > vacumn in his ear, it didn't hurt at all when she had him

> > press

> > > > > towards his ear, from right in front of the ear. She said

> that

> > > > would

> > > > > hurt alot if it was the ear canal.

> > > > >

> > > > > In the end, she told me something was going on, but she

> didn't

> > > know

> > > > > what it was! She was going to leave it up to my mother's

> > > intuition!

> > > > > She offered either more antibiotics or we could take dairy

> out

> > > of

> > > > > his diet and see if that helped. He hasn't had dairy

> products

> > > for 6

> > > > > days now and the vacumming took place 1 week ago, but his

> ear

> > is

> > > > > continuing to slowly fill up with this white goo again!

> > > > >

> > > > > Have any of you had this before or heard of it? What do

you

> > all

> > > > > think? My mother's intuition is saying it IS an ear canal

> > > > infection,

> > > > > although I don't know why it doesn't hurt.

> > > > >

> > > > > Thanks for your help,

> > > > > Marie

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Hi (and anybody else with ideas),

Thought I'd check back in with you regarding Curtis' discharge in

the right ear (the one that had the ctoma). I followed your advice

and requested that a culture be done. The first one came back

negative, but the doctor had commented that he wasn't sure he got

enough of the " goo " to get a result (the ear was in one of it's

better phases at that time). So, 3 weeks later, I requested another

when the ear was really flowing and that came back negative, too!

I also asked the ENT about the kind of ctoma you mentioned in the

ear canal, and she was aware of it... or, at least, thought she was.

She said, " Oh, he had a ______ " (name I can't possibly remember). I

asked if there was any chance Curtis had that and she said it really

didn't look like it at all. She said that with that condition there

was generally enlarging of the canal and there was absolutely

nothing like that going on. Just the redness and mysterious

discharge...

She is suggesting an allergy or intolerance to dairy, and he does

have a history with dairy intolerance when younger. But has anybody

had dairy reactions that affected just one ear? Why would this not

be happening in both ears if it was dairy? When he was very little,

still nursing, he would get eczema if I had any dairy at all. It

would start on his bottom, but would spread rapidly if I didn't cut

out all dairy from my diet. This ear things stays very localized...?

What about yeast? Have any of you had yeast infections in the ear as

a result of wearing a hearing aid so much? If so, what does that

look/feel like?

Sorry this is not directly ctoma related, but for Curtis it

definitely wouldn't be happening if he hadn't had that darn thing!

I'm desperately looking for the answer, as he has not been able to

wear his hearing aid for over a month and 3rd grade is quickly

passing with him not being able to hear everything he needs to hear

(yet again!)

Thanks,

Marie

> > > > > >

> > > > > > Hi,

> > > > > >

> > > > > > I haven't been on this list in awhile. My son, Curtis,

was

> > > > > diagnosed

> > > > > > with ctoma when he was 3, then had multiple surgeries,

but

> > it

> > > > kept

> > > > > > coming back. Finally, a surgeon removed his tonsils and

> > > adenoids

> > > > to

> > > > > > get a more normal air flow into the middle ear, which he

> > said

> > > > would

> > > > > > decrease the chance of regrowth. In my son's case this

> > seemed

> > > to

> > > > > > work. He's 9 1/2 now and it has been 2 years since the

> last

> > > > > surgery.

> > > > > > The doc says she can't see any sign of ctoma reoccurring.

> > > > > >

> > > > > > However, something weird is going on... In August, we

went

> > to

> > > > Lake

> > > > > > Tahoe and we were careful but he got a little lake water

> in

> > > his

> > > > > ear.

> > > > > > It was treated and seemed to go away, although he

> continued

> > to

> > > > > > sniffle. Later it turned out that the lake bacteria had

> > maybe

> > > > moved

> > > > > > to his sinuses and he had some antibiotics, which

cleared

> up

> > > the

> > > > > > sniffling. Partway through the antibiotic treatment, he

> got

> > a

> > > > cold

> > > > > > which got the ear going again. Since that time, the ear

is

> > > > > > strange... there is this white goo accumulating in it.

It

> > > > doesn't

> > > > > > smell bad, it isn't yellow, it doesn't hurt. I took him

in

> > and

> > > > the

> > > > > > surgeon vacumned out the goo to look inside. She said it

> > > looked

> > > > > > okay, didn't look like the goo was coming from the

middle

> > ear.

> > > > But

> > > > > > she also didn't think it was an infection of the ear

canal

> > > > because,

> > > > > > while it did hurt way more than normal when she put the

> > little

> > > > > > vacumn in his ear, it didn't hurt at all when she had

him

> > > press

> > > > > > towards his ear, from right in front of the ear. She

said

> > that

> > > > > would

> > > > > > hurt alot if it was the ear canal.

> > > > > >

> > > > > > In the end, she told me something was going on, but she

> > didn't

> > > > know

> > > > > > what it was! She was going to leave it up to my mother's

> > > > intuition!

> > > > > > She offered either more antibiotics or we could take

dairy

> > out

> > > > of

> > > > > > his diet and see if that helped. He hasn't had dairy

> > products

> > > > for 6

> > > > > > days now and the vacumming took place 1 week ago, but

his

> > ear

> > > is

> > > > > > continuing to slowly fill up with this white goo again!

> > > > > >

> > > > > > Have any of you had this before or heard of it? What do

> you

> > > all

> > > > > > think? My mother's intuition is saying it IS an ear

canal

> > > > > infection,

> > > > > > although I don't know why it doesn't hurt.

> > > > > >

> > > > > > Thanks for your help,

> > > > > > Marie

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Sorry this is not directly ctoma related, but for Curtis it definitely wouldn't be happening if he hadn't had that darn thing! I'm desperately looking for the answer, as he has not been able to wear his hearing aid for over a month and 3rd grade is quickly passing with him not being able to hear everything he needs to hear (yet again!)Hi Marie

Maybe the following site will interest you:

http://dermnetnz.org/dermatitis/otitis-externa.html

I think this will be less relevant (it's in medical hjargon too) but it describes many other kinds of ear canal diseases

http://www.utmb.edu/otoref/Grnds/eac.htm

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Checked by AVG Free Edition.

Version: 7.1.409 / Virus Database: 268.16.4/615 - Release Date: 03/01/07

[Guest guest]

Thanks! This was very helpful... Judging from this site, he has a

fungal thing going on in his ear. The symptoms match very closely.

But they did 2 cultures of the ear, which came back normal. Would a

culture pick up fungus? Or do they have to do a different test for

that?

Thanks again! Now I have a new direction to run off in! I'll let you

all know what happens...

Marie

>

> Sorry this is not directly ctoma related, but for Curtis it

> definitely wouldn't be happening if he hadn't had that darn thing!

> I'm desperately looking for the answer, as he has not been able to

> wear his hearing aid for over a month and 3rd grade is quickly

> passing with him not being able to hear everything he needs to

hear

> (yet again!)

>

> Hi Marie

>

> Maybe the following site will interest you:

>

> http://dermnetnz.org/dermatitis/otitis-externa.html

>

> I think this will be less relevant (it's in medical hjargon too)

but it describes many other kinds of ear canal diseases

>

> http://www.utmb.edu/otoref/Grnds/eac.htm

>

>

>

> No virus found in this outgoing message.

> Checked by AVG Free Edition.

> Version: 7.1.409 / Virus Database: 268.16.4/615 - Release Date:

03/01/07

>

[Guest guest]

> > > > > > >> > > > > > > Hi,> > > > > > > > > > > > > > I haven't been on this list in awhile. My son, Curtis, > was > > > > > > diagnosed > > > > > > > with ctoma when he was 3, then had multiple surgeries, > but > > > it > > > > > kept > > > > > > > coming back. Finally, a surgeon removed his tonsils and > > > > adenoids > > > > > to > > > > > > > get a more normal air flow into the middle ear, which he > > > said > > > > > would > > > > > > > decrease the chance of regrowth. In my son's case this > > > seemed > > > > to > > > > > > > work. He's 9 1/2 now and it has been 2 years since the > > last > > > > > > surgery. > > > > > > > The doc says she can't see any sign of ctoma reoccurring.> > > > > > > > > > > > > > However, something weird is going on... In August, we > went > > > to > > > > > Lake > > > > > > > Tahoe and we were careful but he got a little lake water > > in > > > > his > > > > > > ear. > > > > > > > It was treated and seemed to go away, although he > > continued > > > to > > > > > > > sniffle. Later it turned out that the lake bacteria had > > > maybe > > > > > moved > > > > > > > to his sinuses and he had some antibiotics, which > cleared > > up > > > > the > > > > > > > sniffling. Partway through the antibiotic treatment, he > > got > > > a > > > > > cold > > > > > > > which got the ear going again. Since that time, the ear > is > > > > > > > strange... there is this white goo accumulating in it. > It > > > > > doesn't > > > > > > > smell bad, it isn't yellow, it doesn't hurt. I took him > in > > > and > > > > > the > > > > > > > surgeon vacumned out the goo to look inside. She said it > > > > looked > > > > > > > okay, didn't look like the goo was coming from the > middle > > > ear. > > > > > But > > > > > > > she also didn't think it was an infection of the ear > canal > > > > > because, > > > > > > > while it did hurt way more than normal when she put the > > > little > > > > > > > vacumn in his ear, it didn't hurt at all when she had > him > > > > press > > > > > > > towards his ear, from right in front of the ear. She > said > > > that > > > > > > would > > > > > > > hurt alot if it was the ear canal. > > > > > > > > > > > > > > In the end, she told me something was going on, but she > > > didn't > > > > > know > > > > > > > what it was! She was going to leave it up to my mother's > > > > > intuition! > > > > > > > She offered either more antibiotics or we could take > dairy > > > out > > > > > of > > > > > > > his diet and see if that helped. He hasn't had dairy > > > products > > > > > for 6 > > > > > > > days now and the vacumming took place 1 week ago, but > his > > > ear > > > > is > > > > > > > continuing to slowly fill up with this white goo again!> > > > > > > > > > > > > > Have any of you had this before or heard of it? What do > > you > > > > all > > > > > > > think? My mother's intuition is saying it IS an ear > canal > > > > > > infection, > > > > > > > although I don't know why it doesn't hurt.> > > > > > > > > > > > > > Thanks for your help,> > > > > > > Marie> > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Hi Marie

I can't wear my hearing aids because it causes itching, sweating, pain and discharge like you wouldn't believe.

I have now got a BAHA - bone anchored hearing aid. The purpose of this being implanted is to avoid blocking the ear canal and though I still get tons of ear infections, I get fewer than when I wore the 'normal' hearing aids.

Hope this helps.

Kazzy :-)

Re: ctoma has been gone 2 years but something strange has popped up...?

Hi (and anybody else with ideas),Thought I'd check back in with you regarding Curtis' discharge in the right ear (the one that had the ctoma). I followed your advice and requested that a culture be done. The first one came back negative, but the doctor had commented that he wasn't sure he got enough of the "goo" to get a result (the ear was in one of it's better phases at that time). So, 3 weeks later, I requested another when the ear was really flowing and that came back negative, too!I also asked the ENT about the kind of ctoma you mentioned in the ear canal, and she was aware of it... or, at least, thought she was. She said, "Oh, he had a ______" (name I can't possibly remember). I asked if there was any chance Curtis had that and she said it really didn't look like it at all. She said that with that condition there was generally enlarging of the canal and there was absolutely nothing like that going on. Just the redness and mysterious discharge...She is suggesting an allergy or intolerance to dairy, and he does have a history with dairy intolerance when younger. But has anybody had dairy reactions that affected just one ear? Why would this not be happening in both ears if it was dairy? When he was very little, still nursing, he would get eczema if I had any dairy at all. It would start on his bottom, but would spread rapidly if I didn't cut out all dairy from my diet. This ear things stays very localized...?What about yeast? Have any of you had yeast infections in the ear as a result of wearing a hearing aid so much? If so, what does that look/feel like?Sorry this is not directly ctoma related, but for Curtis it definitely wouldn't be happening if he hadn't had that darn thing! I'm desperately looking for the answer, as he has not been able to wear his hearing aid for over a month and 3rd grade is quickly passing with him not being able to hear everything he needs to hear (yet again!)Thanks,Marie> > > > > >> > > > > > Hi,> > > > > > > > > > > > I haven't been on this list in awhile. My son, Curtis, was > > > > > diagnosed > > > > > > with ctoma when he was 3, then had multiple surgeries, but > > it > > > > kept > > > > > > coming back. Finally, a surgeon removed his tonsils and > > > adenoids > > > > to > > > > > > get a more normal air flow into the middle ear, which he > > said > > > > would > > > > > > decrease the chance of regrowth. In my son's case this > > seemed > > > to > > > > > > work. He's 9 1/2 now and it has been 2 years since the > last > > > > > surgery. > > > > > > The doc says she can't see any sign of ctoma reoccurring.> > > > > > > > > > > > However, something weird is going on... In August, we went > > to > > > > Lake > > > > > > Tahoe and we were careful but he got a little lake water > in > > > his > > > > > ear. > > > > > > It was treated and seemed to go away, although he > continued > > to > > > > > > sniffle. Later it turned out that the lake bacteria had > > maybe > > > > moved > > > > > > to his sinuses and he had some antibiotics, which cleared > up > > > the > > > > > > sniffling. Partway through the antibiotic treatment, he > got > > a > > > > cold > > > > > > which got the ear going again. Since that time, the ear is > > > > > > strange... there is this white goo accumulating in it. It > > > > doesn't > > > > > > smell bad, it isn't yellow, it doesn't hurt. I took him in > > and > > > > the > > > > > > surgeon vacumned out the goo to look inside. She said it > > > looked > > > > > > okay, didn't look like the goo was coming from the middle > > ear. > > > > But > > > > > > she also didn't think it was an infection of the ear canal > > > > because, > > > > > > while it did hurt way more than normal when she put the > > little > > > > > > vacumn in his ear, it didn't hurt at all when she had him > > > press > > > > > > towards his ear, from right in front of the ear. She said > > that > > > > > would > > > > > > hurt alot if it was the ear canal. > > > > > > > > > > > > In the end, she told me something was going on, but she > > didn't > > > > know > > > > > > what it was! She was going to leave it up to my mother's > > > > intuition! > > > > > > She offered either more antibiotics or we could take dairy > > out > > > > of > > > > > > his diet and see if that helped. He hasn't had dairy > > products > > > > for 6 > > > > > > days now and the vacumming took place 1 week ago, but his > > ear > > > is > > > > > > continuing to slowly fill up with this white goo again!> > > > > > > > > > > > Have any of you had this before or heard of it? What do > you > > > all > > > > > > think? My mother's intuition is saying it IS an ear canal > > > > > infection, > > > > > > although I don't know why it doesn't hurt.> > > > > > > > > > > > Thanks for your help,> > > > > > Marie> > > > > >> > > > >> > > >> > >> >>

No virus found in this incoming message.Checked by AVG Free Edition.Version: 7.5.432 / Virus Database: 268.16.4/615 - Release Date: 1/3/2007 1:34 PM

[Guest guest]

Have you considered that maybe he has an allergy to his earmold material? If you are using silicone, change to vinyl to help with allergies. If he's allergic to the material, it can cause weeping, irritation, itching, and all kinds of discomfort.Marie <we4counts@...> wrote: Thanks! This was very helpful... Judging from this site, he has a fungal thing going on in his ear. The symptoms match very closely. But they did 2 cultures of the ear, which came back normal. Would a culture pick up fungus? Or do

they have to do a different test for that? Thanks again! Now I have a new direction to run off in! I'll let you all know what happens... Marie > > Sorry this is not directly ctoma related, but for Curtis it > definitely wouldn't be happening if he hadn't had that darn thing! > I'm desperately looking for the answer, as he has not been able to > wear his hearing aid for over a month and 3rd grade is quickly > passing with him not being able to hear everything he needs to hear > (yet again!) > > Hi Marie > > Maybe the following site will interest you: > > http://dermnetnz.org/dermatitis/otitis-externa.html > > I think this will be less relevant (it's in medical hjargon too) but it describes many other kinds of ear canal diseases > > http://www.utmb.edu/otoref/Grnds/eac.htm > > > > No virus found in this outgoing message. > Checked by AVG Free Edition. > Version: 7.1.409 / Virus Database: 268.16.4/615 - Release Date: 03/01/07 > __________________________________________________

[Guest guest]

Thanks to all of you for so many helpful responses! I really

appreciate your time. At this point, the ear mold, fungus, and dairy

are things I'm going to follow up on.

, a couple of points in response to your thorough reply... I

really do understand about the dairy problem as I am completely

intolerant of it myself. However, I didn't understand how/why it

caused mucous problems so your hi-level explanation was very

interesting. In me, it causes astham and sinus. Sinus for Curtis'

sister and, for Curtis, as an infant, it caused eczema even with a

very tiny amount. That seemed to go away as he got older and he

could tolerate a small amount of cheese a few times a week...more

and he would get a runny nose. So, all his life, he has never drank

milk but has been allowed small amounts of cheese and yogurt.

However, maybe even this does not work for him. We did a 1 week

trial of no dairy products at all, not even in baked goods, but it

was really inconclusive. We did take Curtis to the allergist and had

him tested, but he had NO allergies (amazing, coming from my

family). The allergist doesn't test for foods, but told us to take

him off dairy for 1 week, then re-introduce and see what happened.

After it didn't really help us much, the ENT said no we really had

to take him off it for 6 weeks. At the end of that time, it would be

really clear to us if it was dairy or not... the problem would be

gone or not. She did say that dairy played a role in some 90% of ear

mucous problems. So, we started the 6 wks on Dec 28.

On another front, I talked to Geri, the Deaf & Hard of Hearing

Services rep from SCOE (Sonoma County Board of Education) and she

said, in her experience, there are often multiple causes for these

things. Dairy could be part of it, but there may be more. She

definintely recommended a whole body, whole child approach, working

with diet, or other alternate health methods to find a combo that

worked. I have taken this approach with my own health so I know what

to do... it is just hard for children. For Curtis, one of the

hardest parts of this whole ctoma/surgery/hearing loss experience is

being restricted with the foods he loves!

Geri also suggested (speaking from a whole person, perspective) that

I ask Curtis what I think is causing the issue. She said lots of

times, people at an intuitive level do know what is causing their

troubles. So, I was going to do that and then just this morning,

Curtis voluntarily told me that he thought the hearing aid was

causing the problem! Again, I think this is part of the issue. He

notices that when he wears the hearing aid more mucous builds

up...that could be lack of air or sensitivity to the ear mold. He

has gone sometime without the hearing aid at this point, so I don't

think it is only the mold.

His eustachian tubes are good now. His ctoma reoccurred over and

over through 7 surgeries, but finally after a tonsillectomy and

adenoidectomy, the air flow into the middle ear is normal and we

haven't had any re-occurrences. He had " inset " tonsils, which

apparently can block the e-tubes. The goo he has now is not coming

from the middle ear at all... the middle ear is good, this is all in

the external ear canal.

I had figured out the smell thing over the years (it is a little

gross) and I sniff his ear pretty frequently. This discharge has not

smelled until last night...it had that belly button lint smell to it

(is that the same as " old cheese " ?). But this morning, it doesn't

smell again!

Unfortunately for a child, acupuncture is not so easy. Neither is

swabbing the ear with alcohol. Plus Curtis doesn't have much of an

ear drum anymore so I worry about putting anything, not prescribed

by doc, in there!

I think I'm starting to ramble, so I'll sign off. Anymore thoughts,

ideas are appreciated. I'll be pursuing what I can re fungus, dairy,

and different ear mold materials.

Thanks,

Marie

> > > > > > > >

> > > > > > > > Hi,

> > > > > > > >

> > > > > > > > I haven't been on this list in awhile. My son,

Curtis,

> > was

> > > > > > > diagnosed

> > > > > > > > with ctoma when he was 3, then had multiple

surgeries,

> > but

> > > > it

> > > > > > kept

> > > > > > > > coming back. Finally, a surgeon removed his tonsils

and

> > > > > adenoids

> > > > > > to

> > > > > > > > get a more normal air flow into the middle ear,

which he

> > > > said

> > > > > > would

> > > > > > > > decrease the chance of regrowth. In my son's case

this

> > > > seemed

> > > > > to

> > > > > > > > work. He's 9 1/2 now and it has been 2 years since

the

> > > last

> > > > > > > surgery.

> > > > > > > > The doc says she can't see any sign of ctoma

reoccurring.

> > > > > > > >

> > > > > > > > However, something weird is going on... In August, we

> > went

> > > > to

> > > > > > Lake

> > > > > > > > Tahoe and we were careful but he got a little lake

water

> > > in

> > > > > his

> > > > > > > ear.

> > > > > > > > It was treated and seemed to go away, although he

> > > continued

> > > > to

> > > > > > > > sniffle. Later it turned out that the lake bacteria

had

> > > > maybe

> > > > > > moved

> > > > > > > > to his sinuses and he had some antibiotics, which

> > cleared

> > > up

> > > > > the

> > > > > > > > sniffling. Partway through the antibiotic treatment,

he

> > > got

> > > > a

> > > > > > cold

> > > > > > > > which got the ear going again. Since that time, the

ear

> > is

> > > > > > > > strange... there is this white goo accumulating in

it.

> > It

> > > > > > doesn't

> > > > > > > > smell bad, it isn't yellow, it doesn't hurt. I took

him

> > in

> > > > and

> > > > > > the

> > > > > > > > surgeon vacumned out the goo to look inside. She

said it

> > > > > looked

> > > > > > > > okay, didn't look like the goo was coming from the

> > middle

> > > > ear.

> > > > > > But

> > > > > > > > she also didn't think it was an infection of the ear

> > canal

> > > > > > because,

> > > > > > > > while it did hurt way more than normal when she put

the

> > > > little

> > > > > > > > vacumn in his ear, it didn't hurt at all when she had

> > him

> > > > > press

> > > > > > > > towards his ear, from right in front of the ear. She

> > said

> > > > that

> > > > > > > would

> > > > > > > > hurt alot if it was the ear canal.

> > > > > > > >

> > > > > > > > In the end, she told me something was going on, but

she

> > > > didn't

> > > > > > know

> > > > > > > > what it was! She was going to leave it up to my

mother's

> > > > > > intuition!

> > > > > > > > She offered either more antibiotics or we could take

> > dairy

> > > > out

> > > > > > of

> > > > > > > > his diet and see if that helped. He hasn't had dairy

> > > > products

> > > > > > for 6

> > > > > > > > days now and the vacumming took place 1 week ago, but

> > his

> > > > ear

> > > > > is

> > > > > > > > continuing to slowly fill up with this white goo

again!

> > > > > > > >

> > > > > > > > Have any of you had this before or heard of it? What

do

> > > you

> > > > > all

> > > > > > > > think? My mother's intuition is saying it IS an ear

> > canal

> > > > > > > infection,

> > > > > > > > although I don't know why it doesn't hurt.

> > > > > > > >

> > > > > > > > Thanks for your help,

> > > > > > > > Marie

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Can anybody tell me what are the possible material options for ear

molds?

Thanks,

Marie

> >

> > Sorry this is not directly ctoma related, but for Curtis it

> > definitely wouldn't be happening if he hadn't had that darn

thing!

> > I'm desperately looking for the answer, as he has not been able

to

> > wear his hearing aid for over a month and 3rd grade is quickly

> > passing with him not being able to hear everything he needs to

> hear

> > (yet again!)

> >

> > Hi Marie

> >

> > Maybe the following site will interest you:

> >

> > http://dermnetnz.org/dermatitis/otitis-externa.html

> >

> > I think this will be less relevant (it's in medical hjargon

too)

> but it describes many other kinds of ear canal diseases

> >

> > http://www.utmb.edu/otoref/Grnds/eac.htm

> >

> >

> >

> > No virus found in this outgoing message.

> > Checked by AVG Free Edition.

> > Version: 7.1.409 / Virus Database: 268.16.4/615 - Release Date:

> 03/01/07

> >

>

>

>

>

>

> __________________________________________________

>

[Guest guest]

Lucite - very hard and not appropriate for childrenSilicone - soft, but kids can have allergiesVinyl - soft also, but if there's a lot of hearing loss, have to consider feedback issuesAsk the audiologist which company is used for the earmolds and then I can give specific suggestions. I use Westone, Emtech, Starkey, and All-American companies for earmolds.Marie <we4counts@...> wrote: Can anybody tell me what are the possible material options for ear molds? Thanks, Marie > > > > Sorry this is not directly ctoma related, but for Curtis it > > definitely wouldn't be happening if he hadn't had that darn thing! > > I'm desperately looking for the answer, as he has not been able to > > wear his hearing aid for over a month and 3rd grade is quickly > > passing with him not being able to hear everything he needs to > hear > > (yet again!) > > > > Hi Marie > > > > Maybe the following site will interest you: > > > > http://dermnetnz.org/dermatitis/otitis-externa.html > > > > I think this will be less relevant (it's in medical hjargon too) > but it describes many other kinds of ear canal diseases > > > > http://www.utmb.edu/otoref/Grnds/eac.htm > > > > > > > > No virus found in this outgoing message. > > Checked by AVG Free Edition. > > Version: 7.1.409 / Virus Database: 268.16.4/615 - Release Date: > 03/01/07 > > > > > > > > __________________________________________________ >

[Guest guest]

Hi Marie,

Do you know what they tested/looked for when they did the culture?

Knowing this might help narrow things down a bit.

As I read the symptoms, I thought of yeast, as well. If they looked

at the culture under a microscope this should have been easy to

spot, but I don't know what kind of test they did. It might be a

good ideas to ask specifically if they looked for yeast and what

else they looked for.

Sorry I can't be of more help! I know it's difficult, but with your

son's history, I would keep pursuing this until you get an answer.

Good luck,

> > > > > > >

> > > > > > > Hi,

> > > > > > >

> > > > > > > I haven't been on this list in awhile. My son, Curtis,

> was

> > > > > > diagnosed

> > > > > > > with ctoma when he was 3, then had multiple surgeries,

> but

> > > it

> > > > > kept

> > > > > > > coming back. Finally, a surgeon removed his tonsils

and

> > > > adenoids

> > > > > to

> > > > > > > get a more normal air flow into the middle ear, which

he

> > > said

> > > > > would

> > > > > > > decrease the chance of regrowth. In my son's case this

> > > seemed

> > > > to

> > > > > > > work. He's 9 1/2 now and it has been 2 years since the

> > last

> > > > > > surgery.

> > > > > > > The doc says she can't see any sign of ctoma

reoccurring.

> > > > > > >

> > > > > > > However, something weird is going on... In August, we

> went

> > > to

> > > > > Lake

> > > > > > > Tahoe and we were careful but he got a little lake

water

> > in

> > > > his

> > > > > > ear.

> > > > > > > It was treated and seemed to go away, although he

> > continued

> > > to

> > > > > > > sniffle. Later it turned out that the lake bacteria

had

> > > maybe

> > > > > moved

> > > > > > > to his sinuses and he had some antibiotics, which

> cleared

> > up

> > > > the

> > > > > > > sniffling. Partway through the antibiotic treatment,

he

> > got

> > > a

> > > > > cold

> > > > > > > which got the ear going again. Since that time, the

ear

> is

> > > > > > > strange... there is this white goo accumulating in it.

> It

> > > > > doesn't

> > > > > > > smell bad, it isn't yellow, it doesn't hurt. I took

him

> in

> > > and

> > > > > the

> > > > > > > surgeon vacumned out the goo to look inside. She said

it

> > > > looked

> > > > > > > okay, didn't look like the goo was coming from the

> middle

> > > ear.

> > > > > But

> > > > > > > she also didn't think it was an infection of the ear

> canal

> > > > > because,

> > > > > > > while it did hurt way more than normal when she put

the

> > > little

> > > > > > > vacumn in his ear, it didn't hurt at all when she had

> him

> > > > press

> > > > > > > towards his ear, from right in front of the ear. She

> said

> > > that

> > > > > > would

> > > > > > > hurt alot if it was the ear canal.

> > > > > > >

> > > > > > > In the end, she told me something was going on, but

she

> > > didn't

> > > > > know

> > > > > > > what it was! She was going to leave it up to my

mother's

> > > > > intuition!

> > > > > > > She offered either more antibiotics or we could take

> dairy

> > > out

> > > > > of

> > > > > > > his diet and see if that helped. He hasn't had dairy

> > > products

> > > > > for 6

> > > > > > > days now and the vacumming took place 1 week ago, but

> his

> > > ear

> > > > is

> > > > > > > continuing to slowly fill up with this white goo again!

> > > > > > >

> > > > > > > Have any of you had this before or heard of it? What

do

> > you

> > > > all

> > > > > > > think? My mother's intuition is saying it IS an ear

> canal

> > > > > > infection,

> > > > > > > although I don't know why it doesn't hurt.

> > > > > > >

> > > > > > > Thanks for your help,

> > > > > > > Marie

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Marie, I did not say I can explain it. In fact that is part of the reason I am here, to learn from reading others posts. During my ear troubles and consequently staying at home my mother taught me to bake and later I won awards entering baked goods into the local fair. I won first prize everytime I entered except for once.

So my explanation is more of from a stance of my cooking experiences which eventually led into a more scientific understanding of cooking. I think you are going to need to employ a more scientific approach to you sons problems. First start a notebook journal so you can factually keep track of it all and have a reference.

I am not sure which allergy test he had, there are several types, and often the accuracy is disputed. My issue may not be your sons issue. I never had any skin problems of any sort. BUt let's say for sake of making progress that he is not allergic to dairy. Next I would try organic milk or at least milk/dairy without hormones. Lately I have heard a lot about them as potential culprits. Think of something IN the dairy and you might do some research on that and try various types with less of certain items in them.

You know you are in such a better position than I was about all this. No one every mentioned stopping milk to me. I saw J Fox on some movie mentioning it and as I was suffering tremendously from my nose and sinus pressure at the time so I gave it a shot because I had nothing to lose. And I was free! ( What's the saying from the song ... Freedom is just another word for nothing left to lose? ) Getting advice from a movie is about as unscientific as it gets!!! But it worked. In fact reading here today I wonder why drs were DUMB enough to give me an in the ear hearing aid when they KNEW of my drainage and cause me all that unnecessary suffering, yet again. I probably should have had a BTE hearing aid. I have not put mine in for nearly a year! Interesting posts about materials, too, though thankfully I haven't had to suffer that issue as well.

It will be much much stronger than the belly button lint smell. But if you could flush the stuff out regularly it might help it stay infection free. Chances are that is what his body is trying to do with the goo coming out as it is. And that could still be the dairy. (I bet there is a dairy group somewhere in the thousand plus health groups here on ... I wanted to join more but I find it hard enough to keep up on the reading of just a couple) What kinds of symptoms to dairy do you have when you try it? Have you had it all your life?

Things take time to work out of a body. In my chronic pain research lately I came across a gruesome fact in this regard. The wounded soldiers often have 1/8 inch wide shards of shrapnel come to the surface of their skin YEARS later. The body naturally wants to expell foreign objects. I can only hope it never tries to expell my ceramic shay torpe that replaces the bone eaten away by the ctoma because it gives me about 50% hearing.

Oddly enough recently I had some irritation in my right earlobe and I could feel like a grain of sand in there. This went on annoying me for months and months, maybe the better part of a year even. I never kept track but finally oneday I had a pimple on the surface and something came out. I have to wonder if it did not get pressed in there while I was under in surgery. They use various hemostats and clamps to hold things out the way. I can't say for sure but you never know. Funny thing is that it only happened on my bad ear, never my better ear (which only had tubes).

Have you ever had accupuncture? The needles are literally about one tenth the size of a normal needle so the pain is drastically less. And there is no reason for them to go deep, either, like drawing blood. You might try making a game of it or finding some way to sell it to him. My ENT doc had me do things that were FAR more painful. One was to take this rubber irrigation bulb and put it up my nose and hold the other nostril shut and blow it in attempts to push the eardrum out. It felt about like the top of my head was shot off and I was in tears instantly. And he wanted me to do this REGULARLY to keep that eardrum from sucking itself inward. Accupuncture is less discomfort for me than a mosquito bite. I wanted to take a picture of myself with 33 needles in me! (it'd be cool, what do you think the piercing folks would think of THAT? LOL)

The accupuncture "needles" are literally so thin that the accupuncturist has to use a plastic tube to guide them in or else the simple single finger pressure on the end of the needle would probably bent the thing right in half! That is how incredibly thin the needles are and that is why they cause so little discomfort.

> > > > > > > > >> > > > > > > > > Hi,> > > > > > > > >> > > > > > > > > I haven't been on this list in awhile. My son, > Curtis,> > > was> > > > > > > > diagnosed> > > > > > > > > with ctoma when he was 3, then had multiple > surgeries,> > > but> > > > > it> > > > > > > kept> > > > > > > > > coming back. Finally, a surgeon removed his tonsils > and> > > > > > adenoids> > > > > > > to> > > > > > > > > get a more normal air flow into the middle ear, > which he> > > > > said> > > > > > > would> > > > > > > > > decrease the chance of regrowth. In my son's case > this> > > > > seemed> > > > > > to> > > > > > > > > work. He's 9 1/2 now and it has been 2 years since > the> > > > last> > > > > > > > surgery.> > > > > > > > > The doc says she can't see any sign of ctoma > reoccurring.> > > > > > > > >> > > > > > > > > However, something weird is going on... In August, we> > > went> > > > > to> > > > > > > Lake> > > > > > > > > Tahoe and we were careful but he got a little lake > water> > > > in> > > > > > his> > > > > > > > ear.> > > > > > > > > It was treated and seemed to go away, although he> > > > continued> > > > > to> > > > > > > > > sniffle. Later it turned out that the lake bacteria > had> > > > > maybe> > > > > > > moved> > > > > > > > > to his sinuses and he had some antibiotics, which> > > cleared> > > > up> > > > > > the> > > > > > > > > sniffling. Partway through the antibiotic treatment, > he> > > > got> > > > > a> > > > > > > cold> > > > > > > > > which got the ear going again. Since that time, the > ear> > > is> > > > > > > > > strange... there is this white goo accumulating in > it.> > > It> > > > > > > doesn't> > > > > > > > > smell bad, it isn't yellow, it doesn't hurt. I took > him> > > in> > > > > and> > > > > > > the> > > > > > > > > surgeon vacumned out the goo to look inside. She > said it> > > > > > looked> > > > > > > > > okay, didn't look like the goo was coming from the> > > middle> > > > > ear.> > > > > > > But> > > > > > > > > she also didn't think it was an infection of the ear> > > canal> > > > > > > because,> > > > > > > > > while it did hurt way more than normal when she put > the> > > > > little> > > > > > > > > vacumn in his ear, it didn't hurt at all when she had> > > him> > > > > > press> > > > > > > > > towards his ear, from right in front of the ear. She> > > said> > > > > that> > > > > > > > would> > > > > > > > > hurt alot if it was the ear canal.> > > > > > > > >> > > > > > > > > In the end, she told me something was going on, but > she> > > > > didn't> > > > > > > know> > > > > > > > > what it was! She was going to leave it up to my > mother's> > > > > > > intuition!> > > > > > > > > She offered either more antibiotics or we could take> > > dairy> > > > > out> > > > > > > of> > > > > > > > > his diet and see if that helped. He hasn't had dairy> > > > > products> > > > > > > for 6> > > > > > > > > days now and the vacumming took place 1 week ago, but> > > his> > > > > ear> > > > > > is> > > > > > > > > continuing to slowly fill up with this white goo > again!> > > > > > > > >> > > > > > > > > Have any of you had this before or heard of it? What > do> > > > you> > > > > > all> > > > > > > > > think? My mother's intuition is saying it IS an ear> > > canal> > > > > > > > infection,> > > > > > > > > although I don't know why it doesn't hurt.> > > > > > > > >> > > > > > > > > Thanks for your help,> > > > > > > > > Marie> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

Hi and other helpful folks,

They didn't request a yeast test specifically, but the doc said that

the test they did should have picked up any fungus as well. The

nurse practitioner had squeezed us in just to get a fungal culture

done, so we actually got to see a different ENT which was

interesting.

He said he was happy to do a separate fungal culture all the same

but, once he looked in the ear, he said he didn't really see

anything to culture in it. He looked very long and closely at the

ear, and thought it looked really as good as a post-op ear can look.

So, I told him, " ...but he hasn't been able to wear his hearing aid,

if we put it on it seems that within a few hours you can even hear

the ear squelching if you move it about. " (This particular

association with putting the hearing aid in is something Curtis

noticed and pointed out very recently in the last day or 2...we have

been off dairy for over a week now, too, so that might have made

other contributors easier to see.)

Anyway, as soon as I said that, the doc said it sounded like a

sensitivity to the mold material. I felt really very good about this

doc. He definitely had an attitude of we were working together to

figure out what was causing this. I also mentioned to him that the

SCOE Representative had said that, in her experience, these kind of

problems with children's hearing aids often have more than one

cause, and he agreed with that.

My feeling at this point is that it is a combo of dairy and the ear

mold material. We'll be working on both. Doc also told me, he

*thinks* the BAHA has been approved by the FDA for kids as young as

6 yrs old now. But that would be a last resort for us as Curtis has

developed a serious horrer and revulsion at the thought of any

surgery (surprise).

Thanks,

Marie

> > > > > > > >

> > > > > > > > Hi,

> > > > > > > >

> > > > > > > > I haven't been on this list in awhile. My son,

Curtis,

> > was

> > > > > > > diagnosed

> > > > > > > > with ctoma when he was 3, then had multiple

surgeries,

> > but

> > > > it

> > > > > > kept

> > > > > > > > coming back. Finally, a surgeon removed his tonsils

> and

> > > > > adenoids

> > > > > > to

> > > > > > > > get a more normal air flow into the middle ear,

which

> he

> > > > said

> > > > > > would

> > > > > > > > decrease the chance of regrowth. In my son's case

this

> > > > seemed

> > > > > to

> > > > > > > > work. He's 9 1/2 now and it has been 2 years since

the

> > > last

> > > > > > > surgery.

> > > > > > > > The doc says she can't see any sign of ctoma

> reoccurring.

> > > > > > > >

> > > > > > > > However, something weird is going on... In August,

we

> > went

> > > > to

> > > > > > Lake

> > > > > > > > Tahoe and we were careful but he got a little lake

> water

> > > in

> > > > > his

> > > > > > > ear.

> > > > > > > > It was treated and seemed to go away, although he

> > > continued

> > > > to

> > > > > > > > sniffle. Later it turned out that the lake bacteria

> had

> > > > maybe

> > > > > > moved

> > > > > > > > to his sinuses and he had some antibiotics, which

> > cleared

> > > up

> > > > > the

> > > > > > > > sniffling. Partway through the antibiotic treatment,

> he

> > > got

> > > > a

> > > > > > cold

> > > > > > > > which got the ear going again. Since that time, the

> ear

> > is

> > > > > > > > strange... there is this white goo accumulating in

it.

> > It

> > > > > > doesn't

> > > > > > > > smell bad, it isn't yellow, it doesn't hurt. I took

> him

> > in

> > > > and

> > > > > > the

> > > > > > > > surgeon vacumned out the goo to look inside. She

said

> it

> > > > > looked

> > > > > > > > okay, didn't look like the goo was coming from the

> > middle

> > > > ear.

> > > > > > But

> > > > > > > > she also didn't think it was an infection of the ear

> > canal

> > > > > > because,

> > > > > > > > while it did hurt way more than normal when she put

> the

> > > > little

> > > > > > > > vacumn in his ear, it didn't hurt at all when she

had

> > him

> > > > > press

> > > > > > > > towards his ear, from right in front of the ear. She

> > said

> > > > that

> > > > > > > would

> > > > > > > > hurt alot if it was the ear canal.

> > > > > > > >

> > > > > > > > In the end, she told me something was going on, but

> she

> > > > didn't

> > > > > > know

> > > > > > > > what it was! She was going to leave it up to my

> mother's

> > > > > > intuition!

> > > > > > > > She offered either more antibiotics or we could take

> > dairy

> > > > out

> > > > > > of

> > > > > > > > his diet and see if that helped. He hasn't had dairy

> > > > products

> > > > > > for 6

> > > > > > > > days now and the vacumming took place 1 week ago,

but

> > his

> > > > ear

> > > > > is

> > > > > > > > continuing to slowly fill up with this white goo

again!

> > > > > > > >

> > > > > > > > Have any of you had this before or heard of it? What

> do

> > > you

> > > > > all

> > > > > > > > think? My mother's intuition is saying it IS an ear

> > canal

> > > > > > > infection,

> > > > > > > > although I don't know why it doesn't hurt.

> > > > > > > >

> > > > > > > > Thanks for your help,

> > > > > > > > Marie

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Did he have his ear canal enlarged as a part of the surgery? Surgeons often do this to facilate better airflow.

The squelching is called feedback and its an electrical phenomena which has nothing to do with his ear. It simply means the hearing aids ouput is now being heard by the hearing aids microphone on the outside and it is amplifying in what is known as a positive feedback loop. This causes oscillation, which all sounds are as well the one you are hearing. I went to college for electronics and I know this one for sure.

Cupping a hearing aide in a hand will often do the same thing. The sound output bounces off the hand and back into the mic and you have an instant oscillator AKA noise maker.

Dairy will help but whatever the cause AIRFLOW is what is going to help his problem. Have you tried the Q tip in alcohol and swabbing it?

DRs will screw up at times. My doc, as good as he was, put in non dissolving stitches when it was scheduled for the self dissolving stitches and never made an appointment or told us or maybe even remembered he did.

It got severely infected and to this day I have this extremely painful memory of him putting his knee in my back while I laid face down on the exam room table looking at his brown leather show. My blood and pus dripped on that shoe while they pulled out the stitches and never gave me a drop of anything for the pain. I had to come back from a summer vacation at the cabin for THAT.

The same doctor gave me such a strong antibiotic that it stained, inside the PERMANENT TOOTH, my front two teeth for life. Kids in school nicknamed me skippy because they looked like peanut butter stains. I still have those stains to this day. Dentists have tried scraping them off, relatives told me to try to rub them off with salt and baking soda. Nothing works because they are INSIDE the tooth and were formed when I had baby teeth showing and the adult teeth forming inside my body and the chemicals invaded the teeth when they were being formed. Later I was told it could have been avoided and that he should have known that then. Too late to sue him by then.

So just don't trust everything drs do. They never had groups like this back then. Get a PDR and check every med that goes into his or your body before you take it. Drs do not care enough because they do not have to live with their mistakes, you do.

I mean I am grateful for what they have done for me, I have mentioned a lot of that in other posts here but I guess I just thought I should mention the downside, too. Especially if a dr starts coping an attitude, run the other way as fast as your legs can carry you. Sometimes, as cheap as they are, I don't think it'd be a bad idea to use a digital recorder, like my digital camera has one, and discretely record the office visit and save them to disk or CD rom somewhere safe. That way if any mistake is ever made you have proof. But it is also handy to remember some of the fancy words they use and check on them in various resources later.

I also had dust mite issues and mold issues. Once I moved out of a place with carpetting into a place with all hardwood floors things started to get better. I also got a few of the really high end ionic breeze air cleaners from the sharper image store and I know those have helped me heal up. The electric filters pick up things finer than any physical filter can ever pick up. NOW they also have the models out with the UV phillips sterilamp bulb in it... the exact same technology used in hospitals and eating place to kill germs, bacteria, and viruses. Viruses never get immune to the UV light unlike the chemicals.

Just a couple more things to consider in fairness of telling my complete story so that others hopefully end up suffering less and living in better health.

.. > So, I told him, "...but he hasn't been able to wear his hearing aid, > if we put it on it seems that within a few hours you can even hear > the ear squelching if you move it about." (This particular > association with putting the hearing aid in is something Curtis > noticed and pointed out very recently in the last day or 2...we have > been off dairy for over a week now, too, so that might have made > other contributors easier to see.) > > Anyway, as soon as I said that, the doc said it sounded like a > sensitivity to the mold material. I felt really very good about this > doc. He definitely had an attitude of we were working together to > figure out what was causing this. I also mentioned to him that the > SCOE Representative had said that, in her experience, these kind of > problems with children's hearing aids often have more than one > cause, and he agreed with that.> > My feeling at this point is that it is a combo of dairy and the ear > mold material. We'll be working on both. Doc also told me, he > *thinks* the BAHA has been approved by the FDA for kids as young as > 6 yrs old now. But that would be a last resort for us as Curtis has > developed a serious horrer and revulsion at the thought of any > surgery (surprise).> > Thanks,> Marie> > > > > > > > > > >> > > > > > > > > Hi,> > > > > > > > > > > > > > > > > > I haven't been on this list in awhile. My son, > Curtis, > > > was > > > > > > > > diagnosed > > > > > > > > > with ctoma when he was 3, then had multiple > surgeries, > > > but > > > > > it > > > > > > > kept > > > > > > > > > coming back. Finally, a surgeon removed his tonsils > > and > > > > > > adenoids > > > > > > > to > > > > > > > > > get a more normal air flow into the middle ear, > which > > he > > > > > said > > > > > > > would > > > > > > > > > decrease the chance of regrowth. In my son's case > this > > > > > seemed > > > > > > to > > > > > > > > > work. He's 9 1/2 now and it has been 2 years since > the > > > > last > > > > > > > > surgery. > > > > > > > > > The doc says she can't see any sign of ctoma > > reoccurring.> > > > > > > > > > > > > > > > > > However, something weird is going on... In August, > we > > > went > > > > > to > > > > > > > Lake > > > > > > > > > Tahoe and we were careful but he got a little lake > > water > > > > in > > > > > > his > > > > > > > > ear. > > > > > > > > > It was treated and seemed to go away, although he > > > > continued > > > > > to > > > > > > > > > sniffle. Later it turned out that the lake bacteria > > had > > > > > maybe > > > > > > > moved > > > > > > > > > to his sinuses and he had some antibiotics, which > > > cleared > > > > up > > > > > > the > > > > > > > > > sniffling. Partway through the antibiotic treatment, > > he > > > > got > > > > > a > > > > > > > cold > > > > > > > > > which got the ear going again. Since that time, the > > ear > > > is > > > > > > > > > strange... there is this white goo accumulating in > it. > > > It > > > > > > > doesn't > > > > > > > > > smell bad, it isn't yellow, it doesn't hurt. I took > > him > > > in > > > > > and > > > > > > > the > > > > > > > > > surgeon vacumned out the goo to look inside. She > said > > it > > > > > > looked > > > > > > > > > okay, didn't look like the goo was coming from the > > > middle > > > > > ear. > > > > > > > But > > > > > > > > > she also didn't think it was an infection of the ear > > > canal > > > > > > > because, > > > > > > > > > while it did hurt way more than normal when she put > > the > > > > > little > > > > > > > > > vacumn in his ear, it didn't hurt at all when she > had > > > him > > > > > > press > > > > > > > > > towards his ear, from right in front of the ear. She > > > said > > > > > that > > > > > > > > would > > > > > > > > > hurt alot if it was the ear canal. > > > > > > > > > > > > > > > > > > In the end, she told me something was going on, but > > she > > > > > didn't > > > > > > > know > > > > > > > > > what it was! She was going to leave it up to my > > mother's > > > > > > > intuition! > > > > > > > > > She offered either more antibiotics or we could take > > > dairy > > > > > out > > > > > > > of > > > > > > > > > his diet and see if that helped. He hasn't had dairy > > > > > products > > > > > > > for 6 > > > > > > > > > days now and the vacumming took place 1 week ago, > but > > > his > > > > > ear > > > > > > is > > > > > > > > > continuing to slowly fill up with this white goo > again!> > > > > > > > > > > > > > > > > > Have any of you had this before or heard of it? What > > do > > > > you > > > > > > all > > > > > > > > > think? My mother's intuition is saying it IS an ear > > > canal > > > > > > > > infection, > > > > > > > > > although I don't know why it doesn't hurt.> > > > > > > > > > > > > > > > > > Thanks for your help,> > > > > > > > > Marie> > > > > > > > >> > > > > > > >> > > > > > >> > > > > >> > > > >> > > >> > >> >>

[Guest guest]

No, he didn't have his ear canal enlarged... at least, I don't think

so. It looks a little longer than the canal for his " good " ear, but

it doesn't look wider, if that is what you mean.

Maybe it is just feedback we are hearing... since the doc said he

didn't see anything to culture. Could that happen if he was growing

out of his ear mold and needed a bigger one? It has been awhile

since he got a new one.

I had him tested for allergies twice now and he isn't allergic to

anything, and we already have a hardwood floor because of MY

allergies so I don't think that's it. Food intolerances are a

possibility.

Right now, we're staying away from dairy and we just had a new ear

mold made. Different material, see through, hypoallergenic, and with

a bigger air hole. But I'm not sure what the material is because his

Dad took him in today. I'll let you all know if it helps.

Thanks for all your help and suggestions,

Marie

> > > > > > > > > >

> > > > > > > > > > Hi,

> > > > > > > > > >

> > > > > > > > > > I haven't been on this list in awhile. My son,

> > Curtis,

> > > > was

> > > > > > > > > diagnosed

> > > > > > > > > > with ctoma when he was 3, then had multiple

> > surgeries,

> > > > but

> > > > > > it

> > > > > > > > kept

> > > > > > > > > > coming back. Finally, a surgeon removed his

tonsils

> > > and

> > > > > > > adenoids

> > > > > > > > to

> > > > > > > > > > get a more normal air flow into the middle ear,

> > which

> > > he

> > > > > > said

> > > > > > > > would

> > > > > > > > > > decrease the chance of regrowth. In my son's case

> > this

> > > > > > seemed

> > > > > > > to

> > > > > > > > > > work. He's 9 1/2 now and it has been 2 years

since

> > the

> > > > > last

> > > > > > > > > surgery.

> > > > > > > > > > The doc says she can't see any sign of ctoma

> > > reoccurring.

> > > > > > > > > >

> > > > > > > > > > However, something weird is going on... In

August,

> > we

> > > > went

> > > > > > to

> > > > > > > > Lake

> > > > > > > > > > Tahoe and we were careful but he got a little

lake

> > > water

> > > > > in

> > > > > > > his

> > > > > > > > > ear.

> > > > > > > > > > It was treated and seemed to go away, although he

> > > > > continued

> > > > > > to

> > > > > > > > > > sniffle. Later it turned out that the lake

bacteria

> > > had

> > > > > > maybe

> > > > > > > > moved

> > > > > > > > > > to his sinuses and he had some antibiotics, which

> > > > cleared

> > > > > up

> > > > > > > the

> > > > > > > > > > sniffling. Partway through the antibiotic

treatment,

> > > he

> > > > > got

> > > > > > a

> > > > > > > > cold

> > > > > > > > > > which got the ear going again. Since that time,

the

> > > ear

> > > > is

> > > > > > > > > > strange... there is this white goo accumulating

in

> > it.

> > > > It

> > > > > > > > doesn't

> > > > > > > > > > smell bad, it isn't yellow, it doesn't hurt. I

took

> > > him

> > > > in

> > > > > > and

> > > > > > > > the

> > > > > > > > > > surgeon vacumned out the goo to look inside. She

> > said

> > > it

> > > > > > > looked

> > > > > > > > > > okay, didn't look like the goo was coming from

the

> > > > middle

> > > > > > ear.

> > > > > > > > But

> > > > > > > > > > she also didn't think it was an infection of the

ear

> > > > canal

> > > > > > > > because,

> > > > > > > > > > while it did hurt way more than normal when she

put

> > > the

> > > > > > little

> > > > > > > > > > vacumn in his ear, it didn't hurt at all when she

> > had

> > > > him

> > > > > > > press

> > > > > > > > > > towards his ear, from right in front of the ear.

She

> > > > said

> > > > > > that

> > > > > > > > > would

> > > > > > > > > > hurt alot if it was the ear canal.

> > > > > > > > > >

> > > > > > > > > > In the end, she told me something was going on,

but

> > > she

> > > > > > didn't

> > > > > > > > know

> > > > > > > > > > what it was! She was going to leave it up to my

> > > mother's

> > > > > > > > intuition!

> > > > > > > > > > She offered either more antibiotics or we could

take

> > > > dairy

> > > > > > out

> > > > > > > > of

> > > > > > > > > > his diet and see if that helped. He hasn't had

dairy

> > > > > > products

> > > > > > > > for 6

> > > > > > > > > > days now and the vacumming took place 1 week ago,

> > but

> > > > his

> > > > > > ear

> > > > > > > is

> > > > > > > > > > continuing to slowly fill up with this white goo

> > again!

> > > > > > > > > >

> > > > > > > > > > Have any of you had this before or heard of it?

What

> > > do

> > > > > you

> > > > > > > all

> > > > > > > > > > think? My mother's intuition is saying it IS an

ear

> > > > canal

> > > > > > > > > infection,

> > > > > > > > > > although I don't know why it doesn't hurt.

> > > > > > > > > >

> > > > > > > > > > Thanks for your help,

> > > > > > > > > > Marie

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

[Guest guest]

Good luck with the new earmold. Remember, a hearing aid will feedback if the earmold is too small, is inserted improperly, if the tubing has hardened or has a hole in it, or the volume is too loud.Children should have their earmolds replaced every 3-6 months. Additionally, the soft material the earmold is made of can shrink and harden over time. Remember that the earmold & tubing can be removed from the earhook of the heearing aid and can be handwashed with mild detergent. If he is experiencing drainage, this may need to be done nightly.Marie <we4counts@...> wrote: No, he didn't have his ear canal enlarged... at least, I don't think so. It looks a little longer than the canal for his "good" ear, but it doesn't look wider, if that is what you mean. Maybe it is just feedback we are hearing... since the doc said he didn't see anything to culture. Could that happen if he was growing out of his ear mold and needed a bigger one? It has been awhile since he got a new one. I had him tested for allergies twice now and he isn't allergic to anything, and we already have a hardwood floor because of MY allergies so I don't think that's it. Food intolerances are a possibility. Right now, we're staying away from dairy and we just had a new ear mold made. Different material, see through, hypoallergenic, and with a bigger air hole. But I'm not sure what the material is because his Dad took him

in today. I'll let you all know if it helps. Thanks for all your help and suggestions, Marie > > > > > > > > > > > > > > > > > > > > Hi, > > > > > > > > > > > > > > > > > > > > I haven't been on this list in awhile. My son, > > Curtis, > > > > was > > > > > > > > > diagnosed > > > > > > > > > > with ctoma when he was 3, then had multiple > > surgeries, > > > > but > > > > > > it > > > > > > > > kept > > > > > > > > > > coming back. Finally, a

surgeon removed his tonsils > > > and > > > > > > > adenoids > > > > > > > > to > > > > > > > > > > get a more normal air flow into the middle ear, > > which > > > he > > > > > > said > > > > > > > > would > > > > > > > > > > decrease the chance of regrowth. In my son's case > > this > > > > > > seemed > > > > > > > to > > > > > > > > > > work. He's 9 1/2 now and it has been 2 years since > > the > > > > > last > > > > > > > > > surgery. > > > > > > > > > > The doc says she can't see any sign of ctoma > > > reoccurring. > > > > > > > >

> > > > > > > > > > > > However, something weird is going on... In August, > > we > > > > went > > > > > > to > > > > > > > > Lake > > > > > > > > > > Tahoe and we were careful but he got a little lake > > > water > > > > > in > > > > > > > his > > > > > > > > > ear. > > > > > > > > > > It was treated and seemed to go away, although he > > > > > continued > > > > > > to > > > > > > > > > > sniffle. Later it turned out that the lake bacteria > > > had > > > > > > maybe > > > > > > > > moved > > > > > > > > > > to his

sinuses and he had some antibiotics, which > > > > cleared > > > > > up > > > > > > > the > > > > > > > > > > sniffling. Partway through the antibiotic treatment, > > > he > > > > > got > > > > > > a > > > > > > > > cold > > > > > > > > > > which got the ear going again. Since that time, the > > > ear > > > > is > > > > > > > > > > strange... there is this white goo accumulating in > > it. > > > > It > > > > > > > > doesn't > > > > > > > > > > smell bad, it isn't yellow, it doesn't hurt. I took > > > him > > > > in > > > > > > and > > >

> > > > > the > > > > > > > > > > surgeon vacumned out the goo to look inside. She > > said > > > it > > > > > > > looked > > > > > > > > > > okay, didn't look like the goo was coming from the > > > > middle > > > > > > ear. > > > > > > > > But > > > > > > > > > > she also didn't think it was an infection of the ear > > > > canal > > > > > > > > because, > > > > > > > > > > while it did hurt way more than normal when she put > > > the > > > > > > little > > > > > > > > > > vacumn in his ear, it didn't hurt at all when she > > had > > > > him > > >

> > > > press > > > > > > > > > > towards his ear, from right in front of the ear. She > > > > said > > > > > > that > > > > > > > > > would > > > > > > > > > > hurt alot if it was the ear canal. > > > > > > > > > > > > > > > > > > > > In the end, she told me something was going on, but > > > she > > > > > > didn't > > > > > > > > know > > > > > > > > > > what it was! She was going to leave it up to my > > > mother's > > > > > > > > intuition! > > > > > > > > > > She offered either more antibiotics or we could take > > > > dairy > > > > >

> out > > > > > > > > of > > > > > > > > > > his diet and see if that helped. He hasn't had dairy > > > > > > products > > > > > > > > for 6 > > > > > > > > > > days now and the vacumming took place 1 week ago, > > but > > > > his > > > > > > ear > > > > > > > is > > > > > > > > > > continuing to slowly fill up with this white goo > > again! > > > > > > > > > > > > > > > > > > > > Have any of you had this before or heard of it? What > > > do > > > > > you > > > > > > > all > > > > > > > > > > think? My mother's intuition is saying it IS an

ear > > > > canal > > > > > > > > > infection, > > > > > > > > > > although I don't know why it doesn't hurt. > > > > > > > > > > > > > > > > > > > > Thanks for your help, > > > > > > > > > > Marie > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > >

Access over 1 million songs - Music Unlimited.

[Guest guest]

You know, I'm starting to think, combining what you are saying with

what the docs have been saying, that he had drainage at one point

but doesn't any longer (maybe because no dairy, maybe because he

hasn't worn his aid for almost 2 months now). However, we thought he

still had the discharge because of the " squelching " noise which

sounded very liquid, but could just be feedback... but that doesn't

explain the little bits of white stuff that are on the ear piece

when he pulled it out after " squelching " it, does it?

Still the last few times the Doc has looked in, and even the

audiologist yesterday, they are telling us they are not seeing

anything. It's confusing, but thanks for your good wishes and your

information. I know now to clean regularly and to get it remade

every 3-6 monhts. He did gain a lot of height in the last 6 months.

Hopefully, the new material will help.

Marie

> > > > > > > > > > >

> > > > > > > > > > > Hi,

> > > > > > > > > > >

> > > > > > > > > > > I haven't been on this list in awhile. My son,

> > > Curtis,

> > > > > was

> > > > > > > > > > diagnosed

> > > > > > > > > > > with ctoma when he was 3, then had multiple

> > > surgeries,

> > > > > but

> > > > > > > it

> > > > > > > > > kept

> > > > > > > > > > > coming back. Finally, a surgeon removed his

> tonsils

> > > > and

> > > > > > > > adenoids

> > > > > > > > > to

> > > > > > > > > > > get a more normal air flow into the middle

ear,

> > > which

> > > > he

> > > > > > > said

> > > > > > > > > would

> > > > > > > > > > > decrease the chance of regrowth. In my son's

case

> > > this

> > > > > > > seemed

> > > > > > > > to

> > > > > > > > > > > work. He's 9 1/2 now and it has been 2 years

> since

> > > the

> > > > > > last

> > > > > > > > > > surgery.

> > > > > > > > > > > The doc says she can't see any sign of ctoma

> > > > reoccurring.

> > > > > > > > > > >

> > > > > > > > > > > However, something weird is going on... In

> August,

> > > we

> > > > > went

> > > > > > > to

> > > > > > > > > Lake

> > > > > > > > > > > Tahoe and we were careful but he got a little

> lake

> > > > water

> > > > > > in

> > > > > > > > his

> > > > > > > > > > ear.

> > > > > > > > > > > It was treated and seemed to go away,

although he

> > > > > > continued

> > > > > > > to

> > > > > > > > > > > sniffle. Later it turned out that the lake

> bacteria

> > > > had

> > > > > > > maybe

> > > > > > > > > moved

> > > > > > > > > > > to his sinuses and he had some antibiotics,

which

> > > > > cleared

> > > > > > up

> > > > > > > > the

> > > > > > > > > > > sniffling. Partway through the antibiotic

> treatment,

> > > > he

> > > > > > got

> > > > > > > a

> > > > > > > > > cold

> > > > > > > > > > > which got the ear going again. Since that

time,

> the

> > > > ear

> > > > > is

> > > > > > > > > > > strange... there is this white goo

accumulating

> in

> > > it.

> > > > > It

> > > > > > > > > doesn't

> > > > > > > > > > > smell bad, it isn't yellow, it doesn't hurt.

I

> took

> > > > him

> > > > > in

> > > > > > > and

> > > > > > > > > the

> > > > > > > > > > > surgeon vacumned out the goo to look inside.

She

> > > said

> > > > it

> > > > > > > > looked

> > > > > > > > > > > okay, didn't look like the goo was coming

from

> the

> > > > > middle

> > > > > > > ear.

> > > > > > > > > But

> > > > > > > > > > > she also didn't think it was an infection of

the

> ear

> > > > > canal

> > > > > > > > > because,

> > > > > > > > > > > while it did hurt way more than normal when

she

> put

> > > > the

> > > > > > > little

> > > > > > > > > > > vacumn in his ear, it didn't hurt at all when

she

> > > had

> > > > > him

> > > > > > > > press

> > > > > > > > > > > towards his ear, from right in front of the

ear.

> She

> > > > > said

> > > > > > > that

> > > > > > > > > > would

> > > > > > > > > > > hurt alot if it was the ear canal.

> > > > > > > > > > >

> > > > > > > > > > > In the end, she told me something was going

on,

> but

> > > > she

> > > > > > > didn't

> > > > > > > > > know

> > > > > > > > > > > what it was! She was going to leave it up to

my

> > > > mother's

> > > > > > > > > intuition!

> > > > > > > > > > > She offered either more antibiotics or we

could

> take

> > > > > dairy

> > > > > > > out

> > > > > > > > > of

> > > > > > > > > > > his diet and see if that helped. He hasn't

had

> dairy

> > > > > > > products

> > > > > > > > > for 6

> > > > > > > > > > > days now and the vacumming took place 1 week

ago,

> > > but

> > > > > his

> > > > > > > ear

> > > > > > > > is

> > > > > > > > > > > continuing to slowly fill up with this white

goo

> > > again!

> > > > > > > > > > >

> > > > > > > > > > > Have any of you had this before or heard of

it?

> What

> > > > do

> > > > > > you

> > > > > > > > all

> > > > > > > > > > > think? My mother's intuition is saying it IS

an

> ear

> > > > > canal

> > > > > > > > > > infection,

> > > > > > > > > > > although I don't know why it doesn't hurt.

> > > > > > > > > > >

> > > > > > > > > > > Thanks for your help,

> > > > > > > > > > > Marie

> > > > > > > > > > >

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

>

>

>

>

>

>

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

> Access over 1 million songs - Music Unlimited.

>

[Guest guest]

Marie,

I would be a bit concerned about the bits of white stuff. It may not

have anything to do with the squelching - with my external ear canal

ctoma, I have flakes of white stuff - keratin - come out of my ear

(maybe people do with the other kind of ctoma also, I don't know).

It's slightly shiny looking and sort of brittle (at least, that's the

best description of the consistency that I can come up with). Keep a

close eye on it.

However, I hope it's not that and he continues to improve!

> > > > > > > > > > > >

> > > > > > > > > > > > Hi,

> > > > > > > > > > > >

> > > > > > > > > > > > I haven't been on this list in awhile. My

son,

> > > > Curtis,

> > > > > > was

> > > > > > > > > > > diagnosed

> > > > > > > > > > > > with ctoma when he was 3, then had multiple

> > > > surgeries,

> > > > > > but

> > > > > > > > it

> > > > > > > > > > kept

> > > > > > > > > > > > coming back. Finally, a surgeon removed his

> > tonsils

> > > > > and

> > > > > > > > > adenoids

> > > > > > > > > > to

> > > > > > > > > > > > get a more normal air flow into the middle

> ear,

> > > > which

> > > > > he

> > > > > > > > said

> > > > > > > > > > would

> > > > > > > > > > > > decrease the chance of regrowth. In my son's

> case

> > > > this

> > > > > > > > seemed

> > > > > > > > > to

> > > > > > > > > > > > work. He's 9 1/2 now and it has been 2 years

> > since

> > > > the

> > > > > > > last

> > > > > > > > > > > surgery.

> > > > > > > > > > > > The doc says she can't see any sign of ctoma

> > > > > reoccurring.

> > > > > > > > > > > >

> > > > > > > > > > > > However, something weird is going on... In

> > August,

> > > > we

> > > > > > went

> > > > > > > > to

> > > > > > > > > > Lake

> > > > > > > > > > > > Tahoe and we were careful but he got a

little

> > lake

> > > > > water

> > > > > > > in

> > > > > > > > > his

> > > > > > > > > > > ear.

> > > > > > > > > > > > It was treated and seemed to go away,

> although he

> > > > > > > continued

> > > > > > > > to

> > > > > > > > > > > > sniffle. Later it turned out that the lake

> > bacteria

> > > > > had

> > > > > > > > maybe

> > > > > > > > > > moved

> > > > > > > > > > > > to his sinuses and he had some antibiotics,

> which

> > > > > > cleared

> > > > > > > up

> > > > > > > > > the

> > > > > > > > > > > > sniffling. Partway through the antibiotic

> > treatment,

> > > > > he

> > > > > > > got

> > > > > > > > a

> > > > > > > > > > cold

> > > > > > > > > > > > which got the ear going again. Since that

> time,

> > the

> > > > > ear

> > > > > > is

> > > > > > > > > > > > strange... there is this white goo

> accumulating

> > in

> > > > it.

> > > > > > It

> > > > > > > > > > doesn't

> > > > > > > > > > > > smell bad, it isn't yellow, it doesn't hurt.

> I

> > took

> > > > > him

> > > > > > in

> > > > > > > > and

> > > > > > > > > > the

> > > > > > > > > > > > surgeon vacumned out the goo to look inside.

> She

> > > > said

> > > > > it

> > > > > > > > > looked

> > > > > > > > > > > > okay, didn't look like the goo was coming

> from

> > the

> > > > > > middle

> > > > > > > > ear.

> > > > > > > > > > But

> > > > > > > > > > > > she also didn't think it was an infection of

> the

> > ear

> > > > > > canal

> > > > > > > > > > because,

> > > > > > > > > > > > while it did hurt way more than normal when

> she

> > put

> > > > > the

> > > > > > > > little

> > > > > > > > > > > > vacumn in his ear, it didn't hurt at all

when

> she

> > > > had

> > > > > > him

> > > > > > > > > press

> > > > > > > > > > > > towards his ear, from right in front of the

> ear.

> > She

> > > > > > said

> > > > > > > > that

> > > > > > > > > > > would

> > > > > > > > > > > > hurt alot if it was the ear canal.

> > > > > > > > > > > >

> > > > > > > > > > > > In the end, she told me something was going

> on,

> > but

> > > > > she

> > > > > > > > didn't

> > > > > > > > > > know

> > > > > > > > > > > > what it was! She was going to leave it up to

> my

> > > > > mother's

> > > > > > > > > > intuition!

> > > > > > > > > > > > She offered either more antibiotics or we

> could

> > take

> > > > > > dairy

> > > > > > > > out

> > > > > > > > > > of

> > > > > > > > > > > > his diet and see if that helped. He hasn't

> had

> > dairy

> > > > > > > > products

> > > > > > > > > > for 6

> > > > > > > > > > > > days now and the vacumming took place 1 week

> ago,

> > > > but

> > > > > > his

> > > > > > > > ear

> > > > > > > > > is

> > > > > > > > > > > > continuing to slowly fill up with this white

> goo

> > > > again!

> > > > > > > > > > > >

> > > > > > > > > > > > Have any of you had this before or heard of

> it?

> > What

> > > > > do

> > > > > > > you

> > > > > > > > > all

> > > > > > > > > > > > think? My mother's intuition is saying it IS

> an

> > ear

> > > > > > canal

> > > > > > > > > > > infection,

> > > > > > > > > > > > although I don't know why it doesn't hurt.

> > > > > > > > > > > >

> > > > > > > > > > > > Thanks for your help,

> > > > > > > > > > > > Marie

> > > > > > > > > > > >

> > > > > > > > > > >

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> >

> >

> >

> >

> >

> >

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

> > Access over 1 million songs - Music Unlimited.

> >

>

[Guest guest]

He doesn't have flakes or anything brittle. It is white, creamy,

smells like belly button lint stuff. Anyway, I'm watching it but

will have to see if the continued no dairy diet, or the new ear mold

will make a difference before I can do anything else.

Thanks. I'll keep you posted...

Marie

> > > > > > > > > > > > >

> > > > > > > > > > > > > Hi,

> > > > > > > > > > > > >

> > > > > > > > > > > > > I haven't been on this list in awhile. My

> son,

> > > > > Curtis,

> > > > > > > was

> > > > > > > > > > > > diagnosed

> > > > > > > > > > > > > with ctoma when he was 3, then had

multiple

> > > > > surgeries,

> > > > > > > but

> > > > > > > > > it

> > > > > > > > > > > kept

> > > > > > > > > > > > > coming back. Finally, a surgeon removed

his

> > > tonsils

> > > > > > and

> > > > > > > > > > adenoids

> > > > > > > > > > > to

> > > > > > > > > > > > > get a more normal air flow into the

middle

> > ear,

> > > > > which

> > > > > > he

> > > > > > > > > said

> > > > > > > > > > > would

> > > > > > > > > > > > > decrease the chance of regrowth. In my

son's

> > case

> > > > > this

> > > > > > > > > seemed

> > > > > > > > > > to

> > > > > > > > > > > > > work. He's 9 1/2 now and it has been 2

years

> > > since

> > > > > the

> > > > > > > > last

> > > > > > > > > > > > surgery.

> > > > > > > > > > > > > The doc says she can't see any sign of

ctoma

> > > > > > reoccurring.

> > > > > > > > > > > > >

> > > > > > > > > > > > > However, something weird is going on...

In

> > > August,

> > > > > we

> > > > > > > went

> > > > > > > > > to

> > > > > > > > > > > Lake

> > > > > > > > > > > > > Tahoe and we were careful but he got a

> little

> > > lake

> > > > > > water

> > > > > > > > in

> > > > > > > > > > his

> > > > > > > > > > > > ear.

> > > > > > > > > > > > > It was treated and seemed to go away,

> > although he

> > > > > > > > continued

> > > > > > > > > to

> > > > > > > > > > > > > sniffle. Later it turned out that the

lake

> > > bacteria

> > > > > > had

> > > > > > > > > maybe

> > > > > > > > > > > moved

> > > > > > > > > > > > > to his sinuses and he had some

antibiotics,

> > which

> > > > > > > cleared

> > > > > > > > up

> > > > > > > > > > the

> > > > > > > > > > > > > sniffling. Partway through the antibiotic

> > > treatment,

> > > > > > he

> > > > > > > > got

> > > > > > > > > a

> > > > > > > > > > > cold

> > > > > > > > > > > > > which got the ear going again. Since that

> > time,

> > > the

> > > > > > ear

> > > > > > > is

> > > > > > > > > > > > > strange... there is this white goo

> > accumulating

> > > in

> > > > > it.

> > > > > > > It

> > > > > > > > > > > doesn't

> > > > > > > > > > > > > smell bad, it isn't yellow, it doesn't

hurt.

> > I

> > > took

> > > > > > him

> > > > > > > in

> > > > > > > > > and

> > > > > > > > > > > the

> > > > > > > > > > > > > surgeon vacumned out the goo to look

inside.

> > She

> > > > > said

> > > > > > it

> > > > > > > > > > looked

> > > > > > > > > > > > > okay, didn't look like the goo was coming

> > from

> > > the

> > > > > > > middle

> > > > > > > > > ear.

> > > > > > > > > > > But

> > > > > > > > > > > > > she also didn't think it was an infection

of

> > the

> > > ear

> > > > > > > canal

> > > > > > > > > > > because,

> > > > > > > > > > > > > while it did hurt way more than normal

when

> > she

> > > put

> > > > > > the

> > > > > > > > > little

> > > > > > > > > > > > > vacumn in his ear, it didn't hurt at all

> when

> > she

> > > > > had

> > > > > > > him

> > > > > > > > > > press

> > > > > > > > > > > > > towards his ear, from right in front of

the

> > ear.

> > > She

> > > > > > > said

> > > > > > > > > that

> > > > > > > > > > > > would

> > > > > > > > > > > > > hurt alot if it was the ear canal.

> > > > > > > > > > > > >

> > > > > > > > > > > > > In the end, she told me something was

going

> > on,

> > > but

> > > > > > she

> > > > > > > > > didn't

> > > > > > > > > > > know

> > > > > > > > > > > > > what it was! She was going to leave it up

to

> > my

> > > > > > mother's

> > > > > > > > > > > intuition!

> > > > > > > > > > > > > She offered either more antibiotics or we

> > could

> > > take

> > > > > > > dairy

> > > > > > > > > out

> > > > > > > > > > > of

> > > > > > > > > > > > > his diet and see if that helped. He

hasn't

> > had

> > > dairy

> > > > > > > > > products

> > > > > > > > > > > for 6

> > > > > > > > > > > > > days now and the vacumming took place 1

week

> > ago,

> > > > > but

> > > > > > > his

> > > > > > > > > ear

> > > > > > > > > > is

> > > > > > > > > > > > > continuing to slowly fill up with this

white

> > goo

> > > > > again!

> > > > > > > > > > > > >

> > > > > > > > > > > > > Have any of you had this before or heard

of

> > it?

> > > What

> > > > > > do

> > > > > > > > you

> > > > > > > > > > all

> > > > > > > > > > > > > think? My mother's intuition is saying it

IS

> > an

> > > ear

> > > > > > > canal

> > > > > > > > > > > > infection,

> > > > > > > > > > > > > although I don't know why it doesn't hurt.

> > > > > > > > > > > > >

> > > > > > > > > > > > > Thanks for your help,

> > > > > > > > > > > > > Marie

> > > > > > > > > > > > >

> > > > > > > > > > > >

> > > > > > > > > > >

> > > > > > > > > >

> > > > > > > > >

> > > > > > > >

> > > > > > >

> > > > > >

> > > > >

> > > >

> > >

> > >

> > >

> > >

> > >

> > >

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

> > > Access over 1 million songs - Music Unlimited.

> > >

> >

>

[Guest guest]

Hi.

I had a lot of white stuff come out of my head. it was white and waxy

- like a candle. the consultant said that they apply it during surgery

to stem any bleeding and it is harmless.

[Guest guest]

How long did you have that coming out for? I mean, after the last

surgery?

Thanks,

Marie

>

> Hi.

>

> I had a lot of white stuff come out of my head. it was white and waxy

> - like a candle. the consultant said that they apply it during

surgery

> to stem any bleeding and it is harmless.

>