Re: Just my personal opinion, and no more than that...

[Guest guest]

,

Now that email is a keeper, I'm just noddin my head. Knowing you from other

lists, forums, places, I expect no less of you! (but hey, I want to be in

the mind reading trials, can ya point me to that website? *grin*)

Binns

----Original Message Follows----

From: " P " <RUPraying@...>

Reply-

Subject: Just my personal opinion, and no more than that...

Date: Fri, 16 Dec 2005 16:31:22 -0000

You know? I have received invaluable information on CI Hear about

cochlear implants! I have been a member here long before I ever had

my surgery itself. I've been gettin' information and support here

when my implant was only a twinkle in my surgeon's eye! Grin!

I think it is great that people who have chosen different brands can

brag on their CI, or even share some aggravations. (That's southern

for the occasional problem). Brand loyalty is natural. I drive a

Camry and I'll never own anything else if I have my say about it.

(Unfortunately, I do have a hubby who'd love to have better gas

mileage, and 2 teens who'd love to have a vehicle where they weren't

eating their kneecaps all the way into DC!) I have loved my Camry.

If someone asks me what I think the best mid-size car is, I can go by

my experience with the Camry and give my opinion. Now there are most

certainly other mid-size cars that are excellent. But I don't tell

someone driving a Honda Accord they made the wrong choice, nor do I

go around telling them that the features their car have, don't

compare to the features of my Camry.

We all are reminded occasionally to not criticize implant choices and

companies different from the one we ourselves chose. We are all

asked occasionally to " play nice " . Even though it's a shame we have

to be told that, I suppose it's only natural.

I feel like a broken record here sayin' this, but I know folks that

represent consumers implanted with CI's from all the companies. It

is a rare thing for me to hear that someone does NOT like their CI.

The few times I have heard about negative CI experiences, those

testimonies come from people that represent all 3 brands.

I have met incredible people who work for, or are volunteers for the

CI companies. I've had the opportunity to do some traveling and

speaking on behalf of those of us who are late-deafened. So I've

been able to shake the hands of folks like the S., Tom W.,

Sandy M., W., Dora, Alice, Pam, W., and many others.

If I've met them more than once, I go beyond hand shakin', and hug

their necks. They are helping people hear again, and spreading the

word about the miracle of the cochlear implant. Heck, I may just up

and kiss their face eventually!

Brand competition is a good thing. It keeps the companies looking

for " new and improved " . Ultimately, WE benefit. We want the CI

companies to be competitive.

However, I believe that as consumers we should rejoice in the miracle

of " hearing again " , and celebrate the activation of each and every

cochlear implant. I realize that at times some feel forced to

defend. But it is my opinion that CI recipients and volunteers

should not have to be forced into a defensive position. This is a

group for consumers. If someone specifically asks a question

about a CI brand they are looking into, there is no better opinion

than that of someone who actually HAS that implant.

I agree with what many of have said on here, in that I don't really

understand all the intricacies of my implant. Nor do I understand

how it differs from the other implant brands when it comes to the

technicalities. I lack the professional words on how to say this, so

forgive me for my opinion in that I DON'T GIVE A RIP. What I DO care

about is that people who had hearing loss can hear again. I can hear

again.

If someone gives information on here about their implant and you

believe it to be incorrect, then you should email that person. Or,

perhaps you can simply point CI Hear members to another site that has

proof to back up what you are saying. People who are still searching

can go and look for that information and read about it themselves.

In this way, CI Hear remains a " home " and " hang out " for those of us

who already have a cochlear implant, or for those who are searching

for more information. CI Hear was not started in order to provide a

battle zone. The board's claim to fame is that it provides a place

of hope and support for those with hearing loss.

Trials for new implants and processors are an exciting thing. But

this board is suppose to be a place that folks involved in those

trials can brag on and be excited about what they are taking part

in! When I read about what someone is experiencing as a result of

their being involved in an implant trial, I want to jump through the

computer screen… take both of their hands in mine… and dance a

ridiculous joyous boogie woogie! (Another southern word, pardon me

please!) Please know that I'm not jumpin' on any one particular

person here. I don't know about what goes through the mind of others

when they read a post where a member says directly or indirectly

something negative about another company. Mind reading ability is

not something any of the implants companies have been able to provide

us with yet. I know what goes through my mind, however. My first

thought is that they aren't happy with their own implant, and are

lookin' for a bone to pick.

Someone who is looking for information about cochlear implants can go

to the websites of Advanced Bionics, Cochlear Corporation, and Med-

El. They should be able to come here to CI Hear, and ask for first-

hand testimonials of CI recipients. People who post those 1st hand

testimonials should be allowed to share what they know, and even to

beam with pride and joy through the words they type out.

There are other groups, and list serves that are brand specific.

There are other groups, and list serves who indirectly encourage

confrontation and challenges. It's the way they choose to

disseminate information. Unless I've missed something, it is NOT the

way CI Hear was set up. I've learned things at " those other places "

too! Nothing like getting the rug jerked out from under ya, and

knockin' you are your butt to make you get up slowly and carefully.

While dustin' myself off, I have to time to learn something. One of

my favorite hearing loss angels is a man who often aggravates me but

in doing so helps me think through what I really believe. That's why

he's one of my angels. I like growing and maturing!

Here at CI Hear there are hurting people; people looking for hope and

information. Let's all do our part to keep CI Hear the place they

can go to in order to find it.

Respectfully submitted,

P

Frederick, MD

[Guest guest]

,

What a wonderful post and we should all keep in perspective what you have

said.

Thanks for taking time to write that brand wars are not what this is all

about.

Warm Regards,

Freeman, Kansas

Just my personal opinion, and no more than that...

You know? I have received invaluable information on CI Hear about

cochlear implants! I have been a member here long before I ever had

my surgery itself. I've been gettin' information and support here

when my implant was only a twinkle in my surgeon's eye! Grin!

I think it is great that people who have chosen different brands can

brag on their CI, or even share some aggravations. (That's southern

for the occasional problem). Brand loyalty is natural. I drive a

Camry and I'll never own anything else if I have my say about it.

(Unfortunately, I do have a hubby who'd love to have better gas

mileage, and 2 teens who'd love to have a vehicle where they weren't

eating their kneecaps all the way into DC!) I have loved my Camry.

If someone asks me what I think the best mid-size car is, I can go by

my experience with the Camry and give my opinion. Now there are most

certainly other mid-size cars that are excellent. But I don't tell

someone driving a Honda Accord they made the wrong choice, nor do I

go around telling them that the features their car have, don't

compare to the features of my Camry.

We all are reminded occasionally to not criticize implant choices and

companies different from the one we ourselves chose. We are all

asked occasionally to " play nice " . Even though it's a shame we have

to be told that, I suppose it's only natural.

I feel like a broken record here sayin' this, but I know folks that

represent consumers implanted with CI's from all the companies. It

is a rare thing for me to hear that someone does NOT like their CI.

The few times I have heard about negative CI experiences, those

testimonies come from people that represent all 3 brands.

I have met incredible people who work for, or are volunteers for the

CI companies. I've had the opportunity to do some traveling and

speaking on behalf of those of us who are late-deafened. So I've

been able to shake the hands of folks like the S., Tom W.,

Sandy M., W., Dora, Alice, Pam, W., and many others.

If I've met them more than once, I go beyond hand shakin', and hug

their necks. They are helping people hear again, and spreading the

word about the miracle of the cochlear implant. Heck, I may just up

and kiss their face eventually!

Brand competition is a good thing. It keeps the companies looking

for " new and improved " . Ultimately, WE benefit. We want the CI

companies to be competitive.

However, I believe that as consumers we should rejoice in the miracle

of " hearing again " , and celebrate the activation of each and every

cochlear implant. I realize that at times some feel forced to

defend. But it is my opinion that CI recipients and volunteers

should not have to be forced into a defensive position. This is a

group for consumers. If someone specifically asks a question

about a CI brand they are looking into, there is no better opinion

than that of someone who actually HAS that implant.

I agree with what many of have said on here, in that I don't really

understand all the intricacies of my implant. Nor do I understand

how it differs from the other implant brands when it comes to the

technicalities. I lack the professional words on how to say this, so

forgive me for my opinion in that I DON'T GIVE A RIP. What I DO care

about is that people who had hearing loss can hear again. I can hear

again.

If someone gives information on here about their implant and you

believe it to be incorrect, then you should email that person. Or,

perhaps you can simply point CI Hear members to another site that has

proof to back up what you are saying. People who are still searching

can go and look for that information and read about it themselves.

In this way, CI Hear remains a " home " and " hang out " for those of us

who already have a cochlear implant, or for those who are searching

for more information. CI Hear was not started in order to provide a

battle zone. The board's claim to fame is that it provides a place

of hope and support for those with hearing loss.

Trials for new implants and processors are an exciting thing. But

this board is suppose to be a place that folks involved in those

trials can brag on and be excited about what they are taking part

in! When I read about what someone is experiencing as a result of

their being involved in an implant trial, I want to jump through the

computer screen take both of their hands in mine and dance a

ridiculous joyous boogie woogie! (Another southern word, pardon me

please!) Please know that I'm not jumpin' on any one particular

person here. I don't know about what goes through the mind of others

when they read a post where a member says directly or indirectly

something negative about another company. Mind reading ability is

not something any of the implants companies have been able to provide

us with yet. I know what goes through my mind, however. My first

thought is that they aren't happy with their own implant, and are

lookin' for a bone to pick.

Someone who is looking for information about cochlear implants can go

to the websites of Advanced Bionics, Cochlear Corporation, and Med-

El. They should be able to come here to CI Hear, and ask for first-

hand testimonials of CI recipients. People who post those 1st hand

testimonials should be allowed to share what they know, and even to

beam with pride and joy through the words they type out.

There are other groups, and list serves that are brand specific.

There are other groups, and list serves who indirectly encourage

confrontation and challenges. It's the way they choose to

disseminate information. Unless I've missed something, it is NOT the

way CI Hear was set up. I've learned things at " those other places "

too! Nothing like getting the rug jerked out from under ya, and

knockin' you are your butt to make you get up slowly and carefully.

While dustin' myself off, I have to time to learn something. One of

my favorite hearing loss angels is a man who often aggravates me but

in doing so helps me think through what I really believe. That's why

he's one of my angels. I like growing and maturing!

Here at CI Hear there are hurting people; people looking for hope and

information. Let's all do our part to keep CI Hear the place they

can go to in order to find it.

Respectfully submitted,

P

Frederick, MD

[Guest guest]

Simply put, I like it when folks talk about their products. I've

learned a lot about MedEl and Nucleus lately that I didn't know

about, info I find very exciting! I think it's very natural to share

these great experiences!

But when you take it upon yourself to post on this forum information

that is incorrect (which you did), about a product you don't

understand (that's the impression I'm getting, anyway), I feel a bit

upset that another parent of a possible candidate may read the

misinformation and take it to heart.

In your post on: Wed Dec 14, 2005 10:35 pm (your post that started

this discussion), you seemed to insinuate that roving and choosing

specific channels to stimulate might be preferable to using 16 (not

15 as in your post) fixed channels, or even 120 channels. I found

that confusing and possible misleading. I thought it would be

helpful to present the correct information, to read about others'

actual experiences with the new programming.

Another poster asked what would be the advantage of 120 channels.

Very good question, actually, and I think that's been answered very

well since it was asked!

Another post stated that the 120 channels might be unrealistic. Far

from the truth, actually. It's very real, and exciting.

I don't see " brand wars " happening here, actually I didn't notice

any " bashing " of any sort. Just maybe your initial confusion. You

freely posted your " information " and concerns, we freely answered

them, and I think that was done in a very nice manner, too. You

could have gone directly to Advanced Bionics with your questions to

gain a better understanding on the product, too.

On an even more positive note, though, I think this started a very

good, informative discussion. That is what these forums are for,

whether it's about 120 channels, rechargeable batteries, fully

implantable CIs, phone useage, etc. I don't see anything wrong with

that at all.

--Karin, mom to (CII 11/01), and Tommy (90K 5/04)

www.bionicboys.blogspot.com

BEA Volunteer

[Guest guest]

-

Your post hit the nail on the head, I totally agree with your

sentiments! You have a knack for writing! Thanks for your post and

you are more than welcome to hug my neck anyime!!

Pam

Michigan, Implanted 6/02

>

>

> We all are reminded occasionally to not criticize implant choices

and

> companies different from the one we ourselves chose. We are all

> asked occasionally to " play nice " . Even though it's a shame we

have

> to be told that, I suppose it's only natural.

>

> I feel like a broken record here sayin' this, but I know folks that

> represent consumers implanted with CI's from all the companies. It

> is a rare thing for me to hear that someone does NOT like their

CI.

> The few times I have heard about negative CI experiences, those

> testimonies come from people that represent all 3 brands.

>

> I have met incredible people who work for, or are volunteers for

the

> CI companies. I've had the opportunity to do some traveling and

> speaking on behalf of those of us who are late-deafened. So I've

> been able to shake the hands of folks like the S., Tom W.,

> Sandy M., W., Dora, Alice, Pam, W., and many others.

> If I've met them more than once, I go beyond hand shakin', and hug

> their necks. They are helping people hear again, and spreading the

> word about the miracle of the cochlear implant. Heck, I may just

up

> and kiss their face eventually!

>

> Brand competition is a good thing. It keeps the companies looking

> for " new and improved " . Ultimately, WE benefit. We want the CI

> companies to be competitive.

>

> However, I believe that as consumers we should rejoice in the

miracle

> of " hearing again " , and celebrate the activation of each and every

> cochlear implant. I realize that at times some feel forced to

> defend. But it is my opinion that CI recipients and volunteers

> should not have to be forced into a defensive position. This is a

> group for consumers. If someone specifically asks a question

> about a CI brand they are looking into, there is no better opinion

> than that of someone who actually HAS that implant.

>

> If someone gives information on here about their implant and you

> believe it to be incorrect, then you should email that person. Or,

> perhaps you can simply point CI Hear members to another site that

has

> proof to back up what you are saying. People who are still

searching

> can go and look for that information and read about it themselves.

> In this way, CI Hear remains a " home " and " hang out " for those of

us

> who already have a cochlear implant, or for those who are searching

> for more information. CI Hear was not started in order to provide

a

> battle zone. The board's claim to fame is that it provides a place

> of hope and support for those with hearing loss.

>

> Trials for new implants and processors are an exciting thing. But

> this board is suppose to be a place that folks involved in those

> trials can brag on and be excited about what they are taking part

> in! When I read about what someone is experiencing as a result of

> their being involved in an implant trial, I want to jump through

the

> computer screen… take both of their hands in mine… and dance a

> ridiculous joyous boogie woogie! (Another southern word, pardon me

> please!) Please know that I'm not jumpin' on any one particular

> person here. I don't know about what goes through the mind of

others

> when they read a post where a member says directly or indirectly

> something negative about another company. Mind reading ability is

> not something any of the implants companies have been able to

provide

> us with yet. I know what goes through my mind, however. My first

> thought is that they aren't happy with their own implant, and are

> lookin' for a bone to pick.

>

> Someone who is looking for information about cochlear implants can

go

> to the websites of Advanced Bionics, Cochlear Corporation, and Med-

> El. They should be able to come here to CI Hear, and ask for first-

> hand testimonials of CI recipients. People who post those 1st hand

> testimonials should be allowed to share what they know, and even to

> beam with pride and joy through the words they type out.

>

> There are other groups, and list serves that are brand specific.

> There are other groups, and list serves who indirectly encourage

> confrontation and challenges. It's the way they choose to

> disseminate information. Unless I've missed something, it is NOT

the

> way CI Hear was set up. I've learned things at " those other

places "

> too! Nothing like getting the rug jerked out from under ya, and

> knockin' you are your butt to make you get up slowly and

carefully.

> While dustin' myself off, I have to time to learn something. One

of

> my favorite hearing loss angels is a man who often aggravates me

but

> in doing so helps me think through what I really believe. That's

why

> he's one of my angels. I like growing and maturing!

>

> Here at CI Hear there are hurting people; people looking for hope

and

> information. Let's all do our part to keep CI Hear the place they

> can go to in order to find it.

>

> Respectfully submitted,

> P

> Frederick, MD

>

[Guest guest]

Hey Karin!

I think you have me confused with someone else. I haven't posted since

Nov. 24th, much to my chagrin. I may not post very often, but I read

EVERYTHING on here. I agree with you that products should be talked

about by those who have that product. I encourage you to re-read my

post, as I certainly am not disagreeing with you.

I've never claimed to know anything about 120 channels. (I can't even

work my t.v./vcr/dvd - just ask my teenage son who is mortified by that

knowlege) Grin

P

Frederick, MD

[Guest guest]

,

I love your homepage @ dog_guide below your signature. I just

applied for permission to " begin " the process of getting my own

hearing dog. It can take 2-3 years, or so I'm told by the non-profit

group I am pursuing.

I think it's great to get information about all the companies, and I

really do read all the posts. I rarely post so today is a record

breaker for me. Grin.

I love J, always have. I eat green beans and sushi both. I'm

just cautioning EVERYONE to be aware of " how " they post information.

You can ask questions, ask for clarification, etc. Nothing wrong

with asking questions and looking for answers. I do think we need to

be careful about posting things in such a way that we put a company

that we didn't choose (but others have) in a bad light. I think very

few of us really know what channels, roving, fixed, etc., even mean!

For those who want to know what it means, isn't it best to go

straight to the source and find out more? I've been to big ol'

conferences before and met representatives of all 3 companies.

Although I've not asked for technical specifics, I would guess that

even the representatives do not know all of the in's and out's and

technical jargon that their product has. (Maybe I'm wrong and not

asking the right questions. The technicalities bore me, the miracle

of hearing astonishes me!)

It means alot more to me to read the blogs of people who are in

trials with those 120 channels, than for someone to explain to me

what the 120 channels are. I'm not saying we shouldn't post things

that generate discussion. I'm not casting stones.

I was at a meeting on Wednesday and several people asked to see my

NFreedom and we compared notes. Those notes were what are you

hearing, how easy is it to switch programs, t-coil stuff, batteries,

weight differences, etc. It's kinda funny actually cuz holdin' all

of our CI's in our hands we weren't hearing word ONE what the other

was saying! LOL! But we didn't ask about channels, roving/fixed,

etc. It's about what we were hearing, how our lives are different,

etc.

P

Frederick, MD

[Guest guest]

You're right. I agreed it did turn into a good discussion. Good

point.

--Karin, mom to (CII 11/01), and Tommy (90K 5/04)

www.bionicboys.blogspot.com

BEA Volunteer

[Guest guest]

Sorry! Thank you for clearing that up!

It's great that you guys talk about how life has changed with your

implants, and what folks going through 120 trials are experiencing.

That's what I was pointing out in my posts.

But I have also had other parents ask me questions re: the product,

technology, how it works. I don't have all of the answers, but am

very cautious about making sure the parents have the right scoop

when it does come out. I know how easy it can be to become

overwhelmed with the wonderful cochlear implant options that are

available right now.

--Karin, mom to (CII 11/01), and Tommy (90K 5/04)

www.bionicboys.blogspot.com

BEA Volunteer

>

> Hey Karin!

>

> I think you have me confused with someone else.

[Guest guest]

from MD

Hang in there! This sounds just like me a few months ago. My teenage daughter

had to help me with the DVD player. I bought a movie I wanted to see and

realized I'd never used a DVD player.

When I first recieved my bilateral CI's almost 3 years ago, I didn't know how

to work the new Sony CD player except to put in batteries. I didn't see any

sense in learning how to use one before when I couldn't hear music anymore. My

daughter rolled her eyes and started pushing buttons. I said, " Hey, I can hear.

Tell me what you just did " . I thought the world of technology was going to pass

me by. My CI's changed all that. My CI's changed a lot of things.

BTW...I also drive a Camry and the only thing I don't like about mine is the

leather seats. I didn't fuss about the gas milage until the price of gas went up

but I love my car, dents and all. I've even thought of moving closer to work to

cut some of the 70 miles off the distance I have to drive each day (both ways)

but I'm not trading my car. LOL

Sharon Myers

Bilateral CI Surgery 12-09-02

Bilateral Hookup 1-09-03

**********************

wrote.... (I can't even work my t.v./vcr/dvd - just ask my teenage son

who is mortified by that knowlege) Grin

P

Frederick, MD

__________________________________________________