New to group

[Guest guest]

I find really ironic to have a disease that gives me the worst headaches I have ever had and not able to take anything for it. What does everyone take for pain?????

Re: new to group

I'm in the allergic to augmentin camp. As well as most skin creams...I can't speak to the specific things you've listed. Then again, I'm allergic to everything. Because what you really need on top of the Samter's is to be allergic to everything.

[Guest guest]

Hi -

My doctor prescribed Celebrex. It seems to help and I don't seem to react

badly to it. Some people are ok with Tylenol.

Mona

At 07:23 AM 2004/02/24, you wrote:

I

find really ironic to have a disease that gives me the worst headaches I

have ever had and not able to take anything for it. What does everyone

take for pain?????

Re: new to group

I'm in the allergic to augmentin camp. As well as most skin creams...I can't speak to the specific things you've listed.

Then again, I'm allergic to everything. Because what you really need

on top of the Samter's is to be allergic to everything.

[Guest guest]

Hi Mona,

You are the only other person besides me that I know of that is taking Celebrex. I've been taking it for 4 years now. Are you on 100 or 200 mgs a day?

It really helps me. Polyps aren't currently as much of a problem for me. I use to get polps back within 3 months and now it's been two years. I don't have polyps in my maxillary sinuses but am suspecting they're back in the frontal sinuses.

Tami

Re: new to group

I'm in the allergic to augmentin camp. As well as most skin creams...I can't speak to the specific things you've listed. Then again, I'm allergic to everything. Because what you really need on top of the Samter's is to be allergic to everything.

[Guest guest]

Hi Tami -

I wasn't aware that not many people were taking Celebrex. I've only been

using it since November, 100mg daily if I feel I need it. So far I've

been able to smell again since a 2 week course of Prednisone I took in

early November, but I'd attributed the fact that it's lasted this long to

Singulair and Rhinocort Turbuhaler, started about 6 weeks earlier. Major

polyps shrunk to nearly nothing. Maybe all 4 drugs made a lucky

combo...

Mona

At 08:56 AM 2004/02/24, you wrote:

Hi

Mona,

You are the only other person besides me that I know of that is taking

Celebrex. I've been taking it for 4 years now. Are you on 100

or 200 mgs a day?

It really helps me. Polyps aren't currently as much of a problem

for me. I use to get polps back within 3 months and now it's been

two years. I don't have polyps in my maxillary sinuses but am

suspecting they're back in the frontal sinuses.

Tami

Re: new to group

I'm in the allergic to augmentin camp. As well as most skin creams...I can't speak to the specific things you've listed.

Then again, I'm allergic to everything. Because what you really need

on top of the Samter's is to be allergic to everything.

[Guest guest]

I was given a scrip for Vioxx. I can't take Celebrex because of a

different allergy. My doctor also didn't exclude tylenol.

Apparently at least one study showed no sensitivity or problem with

pulmonary function when patients were challenged with vioxx or

celebrex. Unfortunately I just have the summary of the study from

the doctor -- no citation. It's a good question for the doctor

treating you.

[Guest guest]

Bextra works well for me with no reaction at all. I have taken it off and on for several yearsfor a lower back problem. The way I got a script was I didn't tell the doctor of my ASA allergy. I just told him what I needed the meds for and told him which one I felt worked best for me.

I do notice my sinus seem clearer when I take the Bextra.

Marcus

[Guest guest]

To jessafeiler@...

I too am allergic to Augmentin.

K (Michigan)

PS. Please sign your name at the end of emails. Thanks.

[Guest guest]

Hi . Welcome to the Group. I have one question for you, Does have

tubes in her ears? My son who was implanted at 18 months (November 2003) had

tubes and he drained blood for almost 2 weeks after the surgery. His surgeon at

U of M said it was normal. But he was the first child implanted by this

doctor that did have tubes so he had to consult with others first before he

would

do my sons surgery. Hope this helps. If you have any questions feel free to

email me privately at TRiopelle73@...

hope to hear from you

Tracie

Austen's Mom

implanted 11/2003

activated 12/2003

N24C

[Guest guest]

tahoetreefort writes- " One thing that has been happening to is that some

blood has been draining out of her ear, the Doctor says not to worry as long as

it isn't new bright blood. We'll just see what happens.

I will just tell you what we experienced through this. Yes, in fact seeing dark

blood coming out of her ear is actually a good thing. This means that whatever

fluid was left inside from the surgery is finding a place to get out. I

remember just panicking when we saw this in the hospital because no one had

warned us about this and then the resident who was covering got called back in

the room and he basically wrote us off(I complained about this). But she did

stop draining very quickly, in fact we found out that she stopped too soon as

she ended up with cellulitis in the incision site because the blood was pooling

up behind her ear and caused an infection. This basically all happened because

she has ear tubes and they became clogged with drainage and then caused the

drainage to back up. So my advice to anyone is now exactly this as long as it

isn't the bright new blood bring it on because that means the whole process is

healing and taking care of itself.

Mom of 4

Marcus 13

12

Jon 10

Annika 2

bilaterally implanted 3/1/04

hookup 3/25/04

New to Group

Hi, My name is , I am the mother of who is 25 months old.

received an implant on March 25 and will be activated on May

7. has no spoken language, however she has a sign language

vocabulary of about 200 words. The surgery was very scary, even

though much anticipated, we were thinking " what are we doing, she is

a perfectly healthy girl " ! She was pretty much back to herself the

next day, except for the bandage. Once the bandage came off she was

very happy. We have been through quite a journey to get to where we

are now, fighting with doctors to be tested. We realize we have

quite a journey ahead of us to make the most of the implant. Looking forward

to hearing experiences of others.

Chico, Ca

Nucleus 24

[Guest guest]

Hi Carson,

[Guest guest]

In a message dated 4/24/2004 9:41:26 PM Pacific Standard Time,

carson_nzl@... writes:

If anyone else has been deaf for alot of

years and got a CI , I would like to know how it has turned out. Do

these ever not work? Is the fact that I haven't heard anything for

this period of time going to make a difference? I really don't Known

what questions to ask , but if anyone can be of any help it would be

appreciated.

you are not alone...... i was born profoundly deaf, worn my first hearing aid

when i was 3, like you,,,, been around 90dB with no response at 1,000hz and

above...... was like it for 46 years! With CI, it made a huge difference! I

am hearing things I never dream I would hear in my whole life.

Chance of " don't work " is less than 5%. The other 95% are hearing better

than with hearing aid to some degrees.

Any time your questons pop up in your head, ask in here, most of us be happy

to help.

Welcome to the group!

Lee

[Guest guest]

I was completely deaf for fourteen years before getting my implant four

years ago. I was not expecting a lot and hoped for at least help with my

lip-reading. Imagine my delight and happiness to be able to listen to music

and to hear on the telephone (with the patch cord) once again. It was hard

work but I have my music back and I have my telephone, my ability to talk to

people in the dark and all the good things. Even listening to the birds in

the back yard through the walls.

Life is such a great place when you have your hearing once again.

It is just a process of relearning all the sounds again (my opinion) and

hard work. Music was hard for me but I have succeeded and am not never

without music in my house.

Phyllis

Re: new to group

> In a message dated 4/24/2004 9:41:26 PM Pacific Standard Time,

> carson_nzl@... writes:

> If anyone else has been deaf for alot of

> years and got a CI , I would like to know how it has turned out. Do

> these ever not work? Is the fact that I haven't heard anything for

> this period of time going to make a difference? I really don't Known

> what questions to ask , but if anyone can be of any help it would be

> appreciated.

>

> you are not alone...... i was born profoundly deaf, worn my first hearing

aid

> when i was 3, like you,,,, been around 90dB with no response at 1,000hz

and

> above...... was like it for 46 years! With CI, it made a huge

difference! I

> am hearing things I never dream I would hear in my whole life.

>

> Chance of " don't work " is less than 5%. The other 95% are hearing better

> than with hearing aid to some degrees.

>

> Any time your questons pop up in your head, ask in here, most of us be

happy

> to help.

>

> Welcome to the group!

>

> Lee

>

>

>

[Guest guest]

Hi Carson:

I have been profoundly deaf since birth and have worn HAs till last summer

when I received my CI (Clarion-Auria). My brother also received his on the same

morning as I got mine. HAs only helped us to pick up environmental sounds.

We both were oral and is an excellent lipreader. We both have been deaf for

40 something. On the first initial hookup, we were able to pick up words and

sentences without lipreading. Our family and audiologists were shocked and

amazed as we were not even expected that to happened at that stage. We both use

the regular phone. CI has made a huge difference in our lives as we are able

to recognized many new sounds we have never heard before such as...car signal,

people's voices, listening to music on CD Walkman, radio, water running,

engine running, birds, crickets, ocean waves, etc.

If you have any questions you would like to ask, feel free to ask. I would

be more than happy to assist you.

Debbie B.

Auria--07/03

Prelingual

[Guest guest]

We are trying not to mention brands...but if everyone wishes to say which brand

they have...then this is fine.

Alice

Re: new to group

Hi Carson:

I have been profoundly deaf since birth and have worn HAs till last summer

when I received my CI (Clarion-Auria). My brother also received his on the

same

morning as I got mine. HAs only helped us to pick up environmental sounds.

We both were oral and is an excellent lipreader. We both have been deaf for

40 something. On the first initial hookup, we were able to pick up words and

sentences without lipreading. Our family and audiologists were shocked and

amazed as we were not even expected that to happened at that stage. We both

use

the regular phone. CI has made a huge difference in our lives as we are able

to recognized many new sounds we have never heard before such as...car signal,

people's voices, listening to music on CD Walkman, radio, water running,

engine running, birds, crickets, ocean waves, etc.

If you have any questions you would like to ask, feel free to ask. I would

be more than happy to assist you.

Debbie B.

Auria--07/03

Prelingual

[Guest guest]

In a message dated 4/25/2004 6:26:32 PM Pacific Standard Time,

bingrao@... writes:

<<Chance of " don't work " is less than 5%. The other 95% are hearing

better than with hearing aid to some degrees.>>

Do you have a source for those numbers?

this is what my audie told me, someone else was told 1%.. dont know how that

figure comes....

to back it up......here is few of the links.... that support either figures.

Please note that NONE of those links are from any of CI company.

http://www.hei.org/news/factshts/ciqanda.htm

http://www.atlantaearclinic.com/surgeries.htm

http://www.vh.org/pediatric/patient/otolaryngology/faq/cochlearimplant.html

http://www.cavalierdaily.com:2001/.Archives/1999/January/28/heear.asp

To me.. if i was only to get 3% discrimation (by luck) with Hearing aid....

and 1 month post activation's discrimation of about 30%...... to me....it is

success.

Many people " assume " success means 100% discrimation. This is not what i am

talking about.

Lee

[Guest guest]

In a message dated 4/25/2004 7:23:03 PM Pacific Standard Time,

bingrao@... writes:

What I was looking for was

support for the claim that X% of people hear better with the CI than

with a hearing aid.

Oh ok.. a difference from 3% to 30ish is " clearly " better for me.

Lee

[Guest guest]

Lee,

<<Chance of " don't work " is less than 5%. The other 95% are hearing

better than with hearing aid to some degrees.>>

Do you have a source for those numbers?

____________________________________________

Best Regards,

Brad Ingrao, M.S.Ed. CCC-A, FAAA

Editor

EDEN - The Electronic Deaf Education Network

www.bradingrao.com

e-mail: info@...

[Guest guest]

Hi Phyllis

Great to hear your wonderful success story.

I am curious though, when you say it was a lot of hard work what

exactly did you do to speed the process along...it might help me and

others.

Isobel

Toronto, Canada

- In , " Phyllis M. " <pmiller@n...> wrote:

> I was completely deaf for fourteen years before getting my implant

four

> years ago. I was not expecting a lot and hoped for at least help

with my

> lip-reading. Imagine my delight and happiness to be able to

listen to music

> and to hear on the telephone (with the patch cord) once again. It

was hard

> work but I have my music back and I have my telephone, my ability

to talk to

> people in the dark and all the good things. Even listening to the

birds in

> the back yard through the walls.

> Life is such a great place when you have your hearing once again.

> It is just a process of relearning all the sounds again (my

opinion) and

> hard work. Music was hard for me but I have succeeded and am not

never

> without music in my house.

> Phyllis

> Re: new to group

>

>

> > In a message dated 4/24/2004 9:41:26 PM Pacific Standard Time,

> > carson_nzl@y... writes:

> > If anyone else has been deaf for alot of

> > years and got a CI , I would like to know how it has turned out.

Do

> > these ever not work? Is the fact that I haven't heard anything

for

> > this period of time going to make a difference? I really don't

Known

> > what questions to ask , but if anyone can be of any help it

would be

> > appreciated.

> >

> > you are not alone...... i was born profoundly deaf, worn my

first hearing

> aid

> > when i was 3, like you,,,, been around 90dB with no response at

1,000hz

> and

> > above...... was like it for 46 years! With CI, it made a huge

> difference! I

> > am hearing things I never dream I would hear in my whole life.

> >

> > Chance of " don't work " is less than 5%. The other 95% are

hearing better

> > than with hearing aid to some degrees.

> >

> > Any time your questons pop up in your head, ask in here, most of

us be

> happy

> > to help.

> >

> > Welcome to the group!

> >

> > Lee

> >

> >

> >

[Guest guest]

Lee,

Thanks for the links, I will check them out. What I was looking for was

support for the claim that X% of people hear better with the CI than

with a hearing aid.

____________________________________________

Best Regards,

Brad Ingrao, M.S.Ed. CCC-A, FAAA

Editor

EDEN - The Electronic Deaf Education Network

www.bradingrao.com

e-mail: info@...

Re: new to group

In a message dated 4/25/2004 6:26:32 PM Pacific Standard Time,

bingrao@... writes:

<<Chance of " don't work " is less than 5%. The other 95% are hearing

better than with hearing aid to some degrees.>>

Do you have a source for those numbers?

this is what my audie told me, someone else was told 1%.. dont know how

that figure comes....

to back it up......here is few of the links.... that support either

figures.

Please note that NONE of those links are from any of CI company.

http://www.hei.org/news/factshts/ciqanda.htm

http://www.atlantaearclinic.com/surgeries.htm

http://www.vh.org/pediatric/patient/otolaryngology/faq/cochlearimplant.h

tml

http://www.cavalierdaily.com:2001/.Archives/1999/January/28/heear.asp

To me.. if i was only to get 3% discrimation (by luck) with Hearing

aid....

and 1 month post activation's discrimation of about 30%...... to

me....it is success.

Many people " assume " success means 100% discrimation. This is not what

i am talking about.

Lee

[Guest guest]

Lee,

As I look at these links, I see that they are defining " success " in

surgical/medical terms, not functional hearing (discrimination) terms.

This brings me back to one of the first questions I posed to this list

regarding defining terms. If a person goes into a CI with very, very

poor discrimination as you did, then the " downside risk " is very low

indeed. What continues to concern me is that as the inclusion criteria

widen to include people with much more hearing, the attitude of " there

is nothing at all to lose " remains.

I am not against CI's at all, and I fully recognize and appreciate the

gains that many people on this list have received. I am only saying

that the nearly unconditional optimism I read seems to be lacking in

data to back it up.

____________________________________________

Best Regards,

Brad Ingrao, M.S.Ed. CCC-A, FAAA

Editor

EDEN - The Electronic Deaf Education Network

www.bradingrao.com

e-mail: info@...

Re: new to group

In a message dated 4/25/2004 6:26:32 PM Pacific Standard Time,

bingrao@... writes:

<<Chance of " don't work " is less than 5%. The other 95% are hearing

better than with hearing aid to some degrees.>>

Do you have a source for those numbers?

this is what my audie told me, someone else was told 1%.. dont know how

that figure comes....

to back it up......here is few of the links.... that support either

figures.

Please note that NONE of those links are from any of CI company.

http://www.hei.org/news/factshts/ciqanda.htm

http://www.atlantaearclinic.com/surgeries.htm

http://www.vh.org/pediatric/patient/otolaryngology/faq/cochlearimplant.h

tml

http://www.cavalierdaily.com:2001/.Archives/1999/January/28/heear.asp

To me.. if i was only to get 3% discrimation (by luck) with Hearing

aid....

and 1 month post activation's discrimation of about 30%...... to

me....it is success.

Many people " assume " success means 100% discrimation. This is not what

i am talking about.

Lee

[Guest guest]

Brad,

How can that even be an issue? If a person can hear well with

HAs, yuh think that person is going to qualify for a CI? How can one

even attempt to compare the two? Apples and tangerines.

*---* *---* *---* *---* *---*

A journey of a thousand miles begins with a cash advance.

& Gimlet (Guide Dawggie)

Portland, Oregon

N24C 3G 8/2000 Hookup

rlclark77@...

http://home.comcast.net/~rlclark77/

[Guest guest]

Brad,

You say " the nearly unconditional optimism " and I would point out,

in my case at any rate, its quite true. If it was not for the CI, I

would be totally deaf now. I was born with mild loss. My hearing was

on a one way slide...down. The CI completely reverses that. Of

course I speak for myself. There is my undeniable data. LOL

*---* *---* *---* *---* *---*

" Probably the earliest fly swatters were nothing more than some sort

of striking surface attached to the end of a long stick. "

--Jack Handley

& Gimlet (Guide Dawggie)

Portland, Oregon

N24C 3G 8/2000 Hookup

rlclark77@...

http://home.comcast.net/~rlclark77/

[Guest guest]

,

<< in my case at any rate, its quite true.>>

<<Of course I speak for myself.>>

I suppose the thing that gets me is that while I hear these

" disclaimers " on this list, I don't hear it elsewhere and while many

centers are doing the " right " thing, I am still hearing about people

being " fast tracked " into CI's because the physician and audiologist

believe that they can do no wrong.

____________________________________________

Best Regards,

Brad Ingrao, M.S.Ed. CCC-A, FAAA

Editor

EDEN - The Electronic Deaf Education Network

www.bradingrao.com

e-mail: info@...

[Guest guest]

,

" Doing well " is a very relative thing. I started out my time on this

list trying to determine what level of standard there is in terms of

evaluating hearing aid benefit. There does not appear to be any that I

can see.

While I believe Alice's statement that she and many others here have

tried all non-surgical options, I know from personal experience that not

all centers take this approach.

Qualification for a CI is not an objective measure. The indications for

all devices all have the weak point of relying on an undefined " best

aided condition. " This can be interpreted by a center in several ways

that may or may not mean that their patients can agree with Alice.

As Alice suggests, we audiologists need to do a better job with hearing

aids, earmolds and assistive technology. But more than that, we all (in

my opinion) need to remember that there is much more to all of this

hearing loss remediation than a few measurements made in a sound treated

room. Recommendations that do not begin with " This is only my personal

experience " should be handled carefully.

_____________________________________________

Best Regards,

Brad Ingrao, M.S.Ed. CCC-A, FAAA

Editor

EDEN - The Electronic Deaf Education Network

www.bradingrao.com

e-mail: info@...

Re: new to group

Brad,

How can that even be an issue? If a person can hear well with HAs,

yuh think that person is going to qualify for a CI? How can one even

attempt to compare the two? Apples and tangerines.

*---* *---* *---* *---* *---*

A journey of a thousand miles begins with a cash advance.

& Gimlet (Guide Dawggie)

Portland, Oregon

N24C 3G 8/2000 Hookup

rlclark77@...

http://home.comcast.net/~rlclark77/

[Guest guest]

I don't think the data that backs it up is a problem. But rather the

variability of result.

Honestly, I think there's much more variability of result in hearing aids,

it's just that of less concern because no surgery is done.

Regards/

Jerome

Re: new to group

In a message dated 4/25/2004 6:26:32 PM Pacific Standard Time,

bingrao@... writes:

<<Chance of " don't work " is less than 5%. The other 95% are hearing better

than with hearing aid to some degrees.>>

Do you have a source for those numbers?

this is what my audie told me, someone else was told 1%.. dont know how that

figure comes....

to back it up......here is few of the links.... that support either figures.

Please note that NONE of those links are from any of CI company.

http://www.hei.org/news/factshts/ciqanda.htm

http://www.atlantaearclinic.com/surgeries.htm

http://www.vh.org/pediatric/patient/otolaryngology/faq/cochlearimplant.h

tml

http://www.cavalierdaily.com:2001/.Archives/1999/January/28/heear.asp

To me.. if i was only to get 3% discrimation (by luck) with Hearing aid....

and 1 month post activation's discrimation of about 30%...... to me....it is

success.

Many people " assume " success means 100% discrimation. This is not what i am

talking about.

Lee