RE: Thanks :)

[Guest guest]

,

Thanks sounds terrific! WOW! Maybe my auntie was genius in her

own time! Actually, we all thought so. Thanks for sharing.

Warmest regards and best of successes...Tij

> HI Tij,

>

> I used the Hain Sunflower Oil and the Caster Oil. Caster Oil gives

you

> the results 3 times quicker. I didn't use the caster oil at first.

It

> did take a little time to get use to the strong taste of it, but

it's

> worth it.

>

> I noticed my teeth whitening, my metabolism is finally normal again

- and

> my weight stable - even though I've gone back to too many carbs and

> sweets again (gotta behave again!) If I get off track and stop, my

mouth

> isn't as fresh and clean. It also took away the tooth pains that I

was

> having. There wasn't a cavity, so it was just some ache that the

oil

> swishing took away. It also helped to clean up my sinuses.

>

> All I know is that now, when I don't do it, I really miss it. I am

> really grateful to Karma for posting this remedy. It is very

inexpensive

> and very effective - I love that type of stuff!!!

>

> CyberHugs,

>

[Guest guest]

what sort of stuff do you want us to send oprah?

i intend emailing her from england, i hope that'll make her realise that this

is a worldwide problem. i hope that i can play on the, " if the good ole USA

brings it to the fore, then countries like the UK may follow " , angle??

but...before i send her anything what sort of stuff do you want me to send?

i have pics of my daughter during surgery and post op stuff. i have just

completed a case study (as an assignment for my course), on ...you guessed

it....cholesteatoma.

so if you want stuff like the basic anatomy and physiology of a normal ear v

c-toma, or signs and symptoms, or a case history with pics let me know. i

havent gone into too much detail with the operative procedure, but i have

talked about the types of surgery available. i have the pics of my daughter

because she was/is putting together a book, aimed at kids going in for ENT

ops, to be put on the childrens ENT ward at her hospital (just incase you

thought i was a weirdo), just to try and help other kids going through major

ear ops. the big problem there was the lack of an easy to understand picture

reference for the kids to see before they had their own operation. major ear

surgery is quite the " invisible " surgery, ok the bandage, but hard to explain

to a kid cos it all happens on the inside.

if any of this is helpful let me know. give me an idea of the sort of things

you want mailed to her and then i can follow/back up your format.

thanks

julie

[Guest guest]

At 11:42 PM 1/30/2002 +0000, you wrote:

> I swear, this week is passing more than slow, my consult is the

>4th of Feb. and this has been the longest week of my life.....

Boy, tell me about it! I finally got over my chickenhood and scheduled a

long overdue CT scan and follow up appointment. It's on for Feb 11, ENT

visit to go over the films on Feb 14. I have a sneaking suspicion that

something's going on in there--just a familiar uneasy feeling. I'm usually

not a negative person, but I've been dreading this CT scan since about

October, when I last saw my ENT. It seems like it has been about a year

and a half between surgeries, so I must feel like I'm " due " or something.

Anyhoo, let us know how it goes on Monday. You'll be in my thoughts.

Diane Brunet

[Guest guest]

When I had my first surgery, afterwards, there seemed to be a more balanced feel inside my head. Does that make sense? When it came back 4 months later, I started noticing that it felt like there was something like a weight inside my ear. I could actually feel the mass, I guess. It has been a month and a half since my last one. I keep waiting to feel that, it keeps you and pins and needles.

Has anyone else noticed this? Oh by the way Terri, I sent a letter to Ophra

>From: Sassy Suds

>Reply-cholesteatoma >cholesteatoma >Subject: Re: Thanks >Date: Wed, 30 Jan 2002 15:56:24 -0800 > >At 11:42 PM 1/30/2002 +0000, you wrote: > > > I swear, this week is passing more than slow, my consult is the > >4th of Feb. and this has been the longest week of my life..... > >Boy, tell me about it! I finally got over my chickenhood and scheduled a >long overdue CT scan and follow up appointment. It's on for Feb 11, ENT >visit to go over the films on Feb 14. I have a sneaking suspicion that >something's going on in there--just a familiar uneasy feeling. I'm usually >not a negative person, but I've been dreading this CT scan since about >October, when I last saw my ENT. It seems like it has been about a year >and a half between surgeries, so I must feel like I'm "due" or something. > >Anyhoo, let us know how it goes on Monday. You'll be in my thoughts. > >Diane Brunet > MSN Photos is the easiest way to share and print your photos: Click Here

[Guest guest]

When I had my first surgery, afterwards, there seemed to be a more balanced feel inside my head. Does that make sense? When it came back 4 months later, I started noticing that it felt like there was something like a weight inside my ear. I could actually feel the mass, I guess. It has been a month and a half since my last one. I keep waiting to feel that, it keeps you and pins and needles.

Has anyone else noticed this? Oh by the way Terri, I sent a letter to Ophra

>From: Sassy Suds

>Reply-cholesteatoma >cholesteatoma >Subject: Re: Thanks >Date: Wed, 30 Jan 2002 15:56:24 -0800 > >At 11:42 PM 1/30/2002 +0000, you wrote: > > > I swear, this week is passing more than slow, my consult is the > >4th of Feb. and this has been the longest week of my life..... > >Boy, tell me about it! I finally got over my chickenhood and scheduled a >long overdue CT scan and follow up appointment. It's on for Feb 11, ENT >visit to go over the films on Feb 14. I have a sneaking suspicion that >something's going on in there--just a familiar uneasy feeling. I'm usually >not a negative person, but I've been dreading this CT scan since about >October, when I last saw my ENT. It seems like it has been about a year >and a half between surgeries, so I must feel like I'm "due" or something. > >Anyhoo, let us know how it goes on Monday. You'll be in my thoughts. > >Diane Brunet > Chat with friends online, try MSN Messenger: Click Here

[Guest guest]

Great! We'll get someone to notice us sooner or later! Thanks to everyone for all their help! Whoever ends up on her show, I will be there, hopefully sitting next to her, but if not, in the audience (haha).

Re: Thanks >Date: Wed, 30 Jan 2002 15:56:24 -0800 > >At 11:42 PM 1/30/2002 +0000, you wrote: > > > I swear, this week is passing more than slow, my consult is the > >4th of Feb. and this has been the longest week of my life..... > >Boy, tell me about it! I finally got over my chickenhood and scheduled a >long overdue CT scan and follow up appointment. It's on for Feb 11, ENT >visit to go over the films on Feb 14. I have a sneaking suspicion that >something's going on in there--just a familiar uneasy feeling. I'm usually >not a negative person, but I've been dreading this CT scan since about >October, when I last saw my ENT. It seems like it has been about a year >and a half between surgeries, so I must feel like I'm "due" or something. > >Anyhoo, let us know how it goes on Monday. You'll be in my thoughts. > >Diane Brunet >

Chat with friends online, try MSN Messenger: Click Here

[Guest guest]

Well, , Oprah will not accept packages and/or mail. I found this out

while searching her website. She only accepts e-mails. Bummer, because I

had an incredible three-page letter with details (very emotional, which I

worked on for months). The letter was still mailed and I hope she will read

it. When I e-mailed her yesterday, I mentioned the letter, so hopefully,

she will remember the name (yeah, right) and open the letter. Who knows.

I'm praying for a miracle.

In your e-mail, just state how serious the disease is and what your daughter

has experienced. I think everyone has a soft spot for kids, so hopefully,

we'll get noticed! Let's start praying!

God bless everyone in this support and those who suffer from this terrible

disease!

Terri

Re: Thanks

what sort of stuff do you want us to send oprah?

i intend emailing her from england, i hope that'll make her realise that

this

is a worldwide problem. i hope that i can play on the, " if the good ole USA

brings it to the fore, then countries like the UK may follow " , angle??

but...before i send her anything what sort of stuff do you want me to send?

i have pics of my daughter during surgery and post op stuff. i have just

completed a case study (as an assignment for my course), on ...you guessed

it....cholesteatoma.

so if you want stuff like the basic anatomy and physiology of a normal ear v

c-toma, or signs and symptoms, or a case history with pics let me know. i

havent gone into too much detail with the operative procedure, but i have

talked about the types of surgery available. i have the pics of my daughter

because she was/is putting together a book, aimed at kids going in for ENT

ops, to be put on the childrens ENT ward at her hospital (just incase you

thought i was a weirdo), just to try and help other kids going through major

ear ops. the big problem there was the lack of an easy to understand

picture

reference for the kids to see before they had their own operation. major

ear

surgery is quite the " invisible " surgery, ok the bandage, but hard to

explain

to a kid cos it all happens on the inside.

if any of this is helpful let me know. give me an idea of the sort of

things

you want mailed to her and then i can follow/back up your format.

thanks

julie

[Guest guest]

Hey Terri,

Just wanted to let you know that I sent a letter to Oprah today. It's

about 2 pages. I started it with an introduction of myself and

Vinny - healthy, but ear infections for six years. Then did six

paragraphs entitled: " The Frustration " (explaining how doctors

didn't diagnose); " Our Savior " (meeting Vinny's surgeon); " The Fear &

The Anger " (my first reactions - fear for Vinny; anger at

doctors); " Misery Loves Company " (finding this Group and how

it's helped); " Bad Things Happen For A Reason " (about plans to start

an organization); " Vinny's Prognosis " (surgical procedure, how he is

now, what comes next). I then ended it with the following closing

paragraph,

" We're very fortunate to have had such a wonderful surgeon who has an

excellent track record for recurrence and hearing loss - 0 for 0! A

lot of people have not been so lucky and have had as many as four,

six, or more surgeries. Many are small children. We're fortunate,

but I don't feel we'll ever be out of the woods - there's always the

chance that the 'monster' will be lurking. We just don't know when

he may rear his ugly head. Hopefully, never. Realistically, we can

never take an ear infection for granted again, and neither should

anybody else. "

When I referred to 'the monster' I was referring to a sentence in

the 'Misery Loves Company' pagragraph where I said, " The general

public also needs to know about this well kept secret - this monster

that could be lurking in yours, your child's, or another family

member's head! "

Anyhow, I hope we're able to get their attention!

> Well, , Oprah will not accept packages and/or mail. I found

this out

> while searching her website. She only accepts e-mails. Bummer,

because I

> had an incredible three-page letter with details (very emotional,

which I

> worked on for months). The letter was still mailed and I hope she

will read

> it. When I e-mailed her yesterday, I mentioned the letter, so

hopefully,

> she will remember the name (yeah, right) and open the letter. Who

knows.

> I'm praying for a miracle.

>

> In your e-mail, just state how serious the disease is and what your

daughter

> has experienced. I think everyone has a soft spot for kids, so

hopefully,

> we'll get noticed! Let's start praying!

>

> God bless everyone in this support and those who suffer from this

terrible

> disease!

>

> Terri

>

> Re: Thanks

>

>

> what sort of stuff do you want us to send oprah?

> i intend emailing her from england, i hope that'll make her realise

that

> this

> is a worldwide problem. i hope that i can play on the, " if the

good ole USA

> brings it to the fore, then countries like the UK may follow " ,

angle??

> but...before i send her anything what sort of stuff do you want me

to send?

> i have pics of my daughter during surgery and post op stuff. i

have just

> completed a case study (as an assignment for my course), on ...you

guessed

> it....cholesteatoma.

> so if you want stuff like the basic anatomy and physiology of a

normal ear v

> c-toma, or signs and symptoms, or a case history with pics let me

know. i

> havent gone into too much detail with the operative procedure, but

i have

> talked about the types of surgery available. i have the pics of my

daughter

> because she was/is putting together a book, aimed at kids going in

for ENT

> ops, to be put on the childrens ENT ward at her hospital (just

incase you

> thought i was a weirdo), just to try and help other kids going

through major

> ear ops. the big problem there was the lack of an easy to

understand

> picture

> reference for the kids to see before they had their own operation.

major

> ear

> surgery is quite the " invisible " surgery, ok the bandage, but hard

to

> explain

> to a kid cos it all happens on the inside.

> if any of this is helpful let me know. give me an idea of the sort

of

> things

> you want mailed to her and then i can follow/back up your format.

> thanks

> julie

>

>

>

[Guest guest]

Very good letter, . Did you mail it to her or send it through e-

mail? My husband suggested that I send my original letter, but in

three separate parts (since it wouldn't all fit). Because I

footnoted twice, I will have to add the footnotes into the original

letter, since they won't copy over into the e-mail. When I e-mailed

her on Tuesday, I mentioned the fact that a letter had been mailed

(hoping that when it comes, they will open it). Who knows.

P.S. I've started praying to Drexel, the woman from

Philadelphia who was just recently canonized. One of her miracles

was a boy whose hearing was completely restored (because the family

had prayed to her).

Terri

> > Well, , Oprah will not accept packages and/or mail. I found

> this out

> > while searching her website. She only accepts e-mails. Bummer,

> because I

> > had an incredible three-page letter with details (very emotional,

> which I

> > worked on for months). The letter was still mailed and I hope

she

> will read

> > it. When I e-mailed her yesterday, I mentioned the letter, so

> hopefully,

> > she will remember the name (yeah, right) and open the letter.

Who

> knows.

> > I'm praying for a miracle.

> >

> > In your e-mail, just state how serious the disease is and what

your

> daughter

> > has experienced. I think everyone has a soft spot for kids, so

> hopefully,

> > we'll get noticed! Let's start praying!

> >

> > God bless everyone in this support and those who suffer from this

> terrible

> > disease!

> >

> > Terri

> >

> > Re: Thanks

> >

> >

> > what sort of stuff do you want us to send oprah?

> > i intend emailing her from england, i hope that'll make her

realise

> that

> > this

> > is a worldwide problem. i hope that i can play on the, " if the

> good ole USA

> > brings it to the fore, then countries like the UK may follow " ,

> angle??

> > but...before i send her anything what sort of stuff do you want

me

> to send?

> > i have pics of my daughter during surgery and post op stuff. i

> have just

> > completed a case study (as an assignment for my course),

on ...you

> guessed

> > it....cholesteatoma.

> > so if you want stuff like the basic anatomy and physiology of a

> normal ear v

> > c-toma, or signs and symptoms, or a case history with pics let me

> know. i

> > havent gone into too much detail with the operative procedure,

but

> i have

> > talked about the types of surgery available. i have the pics of

my

> daughter

> > because she was/is putting together a book, aimed at kids going

in

> for ENT

> > ops, to be put on the childrens ENT ward at her hospital (just

> incase you

> > thought i was a weirdo), just to try and help other kids going

> through major

> > ear ops. the big problem there was the lack of an easy to

> understand

> > picture

> > reference for the kids to see before they had their own

operation.

> major

> > ear

> > surgery is quite the " invisible " surgery, ok the bandage, but

hard

> to

> > explain

> > to a kid cos it all happens on the inside.

> > if any of this is helpful let me know. give me an idea of the

sort

> of

> > things

> > you want mailed to her and then i can follow/back up your format.

> > thanks

> > julie

> >

> >

> >

[Guest guest]

I emailed it earlier today, and I just received the standard 'form

email' from them saying that they received it, but due to the high

volume, they can't guarantee that I'll get a personal response. I

also sent a copy to Vinny's surgeon and asked for his input in case I

want to use it again.

I saw an interesting piece on our local NBC News affiliate out of

Orlando/Daytona this morning. They do a thing called '2 Your Health'

(they're channel 2), and this morning they talked about Mastoiditis,

and showed a little girl that was diagnosed with it, how it develops,

and how it's treated! I think they need a little letter about

cholesteatoma! I'm on it!

> > > Well, , Oprah will not accept packages and/or mail. I

found

> > this out

> > > while searching her website. She only accepts e-mails.

Bummer,

> > because I

> > > had an incredible three-page letter with details (very

emotional,

> > which I

> > > worked on for months). The letter was still mailed and I hope

> she

> > will read

> > > it. When I e-mailed her yesterday, I mentioned the letter, so

> > hopefully,

> > > she will remember the name (yeah, right) and open the letter.

> Who

> > knows.

> > > I'm praying for a miracle.

> > >

> > > In your e-mail, just state how serious the disease is and what

> your

> > daughter

> > > has experienced. I think everyone has a soft spot for kids, so

> > hopefully,

> > > we'll get noticed! Let's start praying!

> > >

> > > God bless everyone in this support and those who suffer from

this

> > terrible

> > > disease!

> > >

> > > Terri

> > >

> > > Re: Thanks

> > >

> > >

> > > what sort of stuff do you want us to send oprah?

> > > i intend emailing her from england, i hope that'll make her

> realise

> > that

> > > this

> > > is a worldwide problem. i hope that i can play on the, " if the

> > good ole USA

> > > brings it to the fore, then countries like the UK may follow " ,

> > angle??

> > > but...before i send her anything what sort of stuff do you

want

> me

> > to send?

> > > i have pics of my daughter during surgery and post op stuff. i

> > have just

> > > completed a case study (as an assignment for my course),

> on ...you

> > guessed

> > > it....cholesteatoma.

> > > so if you want stuff like the basic anatomy and physiology of a

> > normal ear v

> > > c-toma, or signs and symptoms, or a case history with pics let

me

> > know. i

> > > havent gone into too much detail with the operative procedure,

> but

> > i have

> > > talked about the types of surgery available. i have the pics

of

> my

> > daughter

> > > because she was/is putting together a book, aimed at kids going

> in

> > for ENT

> > > ops, to be put on the childrens ENT ward at her hospital (just

> > incase you

> > > thought i was a weirdo), just to try and help other kids going

> > through major

> > > ear ops. the big problem there was the lack of an easy to

> > understand

> > > picture

> > > reference for the kids to see before they had their own

> operation.

> > major

> > > ear

> > > surgery is quite the " invisible " surgery, ok the bandage, but

> hard

> > to

> > > explain

> > > to a kid cos it all happens on the inside.

> > > if any of this is helpful let me know. give me an idea of the

> sort

> > of

> > > things

> > > you want mailed to her and then i can follow/back up your

format.

> > > thanks

> > > julie

> > >

> > >

> > >

[Guest guest]

Hi and Terri - I've been away from the site for a while; an

update on getting info to Oprah - I've sent several emails over the

past 2-3 years and have heard nothng. Caryn, Chelsy's mum