Re: New to Group-lots of questions

January 2, 2006

Dear Motheringvoice,

It is not surprising that a nurse practioner/xray reader/ or chiro isn't

giving you the degree of your curve or cobb angle. Measuring the scolioisis

curve

is an art and it can be read differently even by experts. It is usually a

tool used by scoliosis orthopedic specialists accurately. I don't know if

swayback or lordosis is related-perhaps Racine might know. Surgery should

only

be considered from a scoliosis expert since it is such a speciality. Good

luck.

Jolene

June 22, 2009

Hi Brigid,

I have the Med El EAS (hybrid by another name).

Both Cochlear & Med El are in clinical trials, contact each company directly to

find out the steps involved in seeing if you qualify, they are the ONLY proper

source.

That being said I can speak from personal experience and for me the EAS has been

amazing (I had an exceptionally rare issue post op that had me get a second

surgery but is not relevant to the device).

I went through something similiar to you, having my hearing loss gradual worsen

from 21 to 40's and HA's becoming basically useless.

With the EAS after 3 months I scored 92% on sentences in 70dB noise (which is

damn loud I can tell you).

I'd be happy to share as much information as possible with you, you send me an

E-Mail or we can use the group format.

Best of Luck,

bruce

>

> Hi, my name is Brigid and I just had an appt with audiologist last week who

recommended cochlear implant. I've gotten over the initial shock, sadness,

frustration of having my hearing go from bad to worse and spent the weekend

learning all I can about CI from the internet. Now I need to hear from you.

>

> About my hearing: I have very loud tinnitus that interferes with my hearing,

and a progressive loss in both ears (24% L, 36%R). I tried hearing aids back in

2004 and hated them. Then again in 2006 and have been wearing them daily since.

In the last year or so, I feel like they act more as ear plugs than sound

enhancers.

>

> My biggest frustration comes from wondering how on earth I will be able to

work with this progressive loss. I waited to go back to school until we were

finacially able, and our children were old enough (I'm 47). I got my bachelors

in 2004, my masters in 2007, and spent the last two years becoming

licensed....as a counselor!!! I'm in the listening business! My job requires

talking and an exchange of communication in a way that I am failing at. It seems

like some kind of cosmic joke to have come all this way only to have my hearing

fail so miserably.

>

> What I would love to know from you is...will I be able to understand

conversation? I listened to a simulation online and I have to say it really

scared me. It sounds so mechanical, but I've read that it improves with

time...is this so? I have a granddaughter that will turn 1 next month and is

just starting to say words. I so want to hear her voice and what she says to me.

I avoid phone converstation like the plague....will that improve with CI?

>

> I've read about the hybrid CI that has recently been used in US....does anyone

have experience with that? Reading about it, it seems to be something that I

would be a candidate for since much of my loss is at the high frequencies, and I

still have residual hearing.

>

> And I know this is so lame, but I wonder about the aesthetics of the

equipment. How does it all work with hair! I have so many questions, and I know

these are silly concerns....but they are concerns nonetheless.

>

> I have an evaluation set for July 14 but would like to be as informed as

possible before I get there. Any info, stories, suggestions, advice would be so

appreciated. Thanks for any help you can give me....

>

June 22, 2009

Hi Bruce,

Thanks for your reply. I just checked the Med El website and looked at info

about the EAS. How long have you had yours? What was your sentence recognition

before the EAS? After 3 months and having 92% sounds wonderful! Also, what did

you mean by " only proper source " ?

My HAs are from Beltone. I originally went to University of Virginia Audiology

(about 12 years ago) when I began to question my hearing ability. I was stold

then that I could benefit from hearing aids. I waited, of course, then did the

Beltone route. Just recently I felt like OI needed a more clinically sound

opinion and went back to UVA. I meet with CI evaluator and then with surgeon to

discuss options in a few weeks. I just want to be prepared and really am not

sure what to even ask.

If/when you have a chance, can you give me a bit of your story? How you came to

conclusion of CI, how you decided on EAS? It seems like that would make sense if

there is still residual hearing. I am also concerned about the quality of sound

after hearing simulations online....sounds very sci-fi like.

Thanks again, Bruce....

From: Bruce <bachip@...>

Subject: Re: New to Group-lots of questions

Date: Monday, June 22, 2009, 10:03 AM

Hi Brigid,

I have the Med El EAS (hybrid by another name).

Both Cochlear & Med El are in clinical trials, contact each company directly to

find out the steps involved in seeing if you qualify, they are the ONLY proper

source.

That being said I can speak from personal experience and for me the EAS has been

amazing (I had an exceptionally rare issue post op that had me get a second

surgery but is not relevant to the device).

I went through something similiar to you, having my hearing loss gradual worsen

from 21 to 40's and HA's becoming basically useless.

With the EAS after 3 months I scored 92% on sentences in 70dB noise (which is

damn loud I can tell you).

I'd be happy to share as much information as possible with you, you send me an

E-Mail or we can use the group format.

Best of Luck,

bruce

>

> Hi, my name is Brigid and I just had an appt with audiologist last week who

recommended cochlear implant. I've gotten over the initial shock, sadness,

frustration of having my hearing go from bad to worse and spent the weekend

learning all I can about CI from the internet. Now I need to hear from you.

>

> About my hearing: I have very loud tinnitus that interferes with my hearing,

and a progressive loss in both ears (24% L, 36%R). I tried hearing aids back in

2004 and hated them. Then again in 2006 and have been wearing them daily since.

In the last year or so, I feel like they act more as ear plugs than sound

enhancers.

>

> My biggest frustration comes from wondering how on earth I will be able to

work with this progressive loss. I waited to go back to school until we were

finacially able, and our children were old enough (I'm 47). I got my bachelors

in 2004, my masters in 2007, and spent the last two years becoming licensed....

as a counselor!!! I'm in the listening business! My job requires talking and an

exchange of communication in a way that I am failing at. It seems like some kind

of cosmic joke to have come all this way only to have my hearing fail so

miserably.

>

> What I would love to know from you is...will I be able to understand

conversation? I listened to a simulation online and I have to say it really

scared me. It sounds so mechanical, but I've read that it improves with

time...is this so? I have a granddaughter that will turn 1 next month and is

just starting to say words. I so want to hear her voice and what she says to me.

I avoid phone converstation like the plague....will that improve with CI?

>

> I've read about the hybrid CI that has recently been used in US....does anyone

have experience with that? Reading about it, it seems to be something that I

would be a candidate for since much of my loss is at the high frequencies, and I

still have residual hearing.

>

> And I know this is so lame, but I wonder about the aesthetics of the

equipment. How does it all work with hair! I have so many questions, and I know

these are silly concerns.... but they are concerns nonetheless.

>

> I have an evaluation set for July 14 but would like to be as informed as

possible before I get there. Any info, stories, suggestions, advice would be so

appreciated. Thanks for any help you can give me....

>

June 22, 2009

Hello Brigid. I am 73 years old, and have a Cochlear Freedom CI which I

received in September 2005. To answer one of your questions from my own

experience, yes, you should be able to understand conversation. I currently work

in retail sales, and am able to hear the customers quite well. If I have a

problem, I have no qualms about asking them to speak slower or or repeat.

Background noise can be a problem, but one of my 4 programs allows me to reduce

it as much as is practicable. Understand, that for most of us with CI's it took

a lot of work and practice to hear like I do now. How much depends on many

factors which I will not go into now, but it is always worth the effort. If you

qualify for a CI, I would get as much info as possible on the 3 brands(Cochlear

Corp., Advanced Bionics, and Medel), ask any of your questions to your surgeon

and audiologist as well as to this listserv, and select the brand which most

fits your lifestyle. They are all very

good. I hope the above helps.

Irv in Ca.

________________________________

From: river_harmony <river_harmony@...>

Sent: Monday, June 22, 2009 5:08:19 AM

Subject: New to Group-lots of questions

Hi, my name is Brigid and I just had an appt with audiologist last week who

recommended cochlear implant. I've gotten over the initial shock, sadness,

frustration of having my hearing go from bad to worse and spent the weekend

learning all I can about CI from the internet. Now I need to hear from you.

About my hearing: I have very loud tinnitus that interferes with my hearing, and

a progressive loss in both ears (24% L, 36%R). I tried hearing aids back in 2004

and hated them. Then again in 2006 and have been wearing them daily since. In

the last year or so, I feel like they act more as ear plugs than sound

enhancers.

My biggest frustration comes from wondering how on earth I will be able to work

with this progressive loss. I waited to go back to school until we were

finacially able, and our children were old enough (I'm 47). I got my bachelors

in 2004, my masters in 2007, and spent the last two years becoming licensed....

as a counselor!!! I'm in the listening business! My job requires talking and an

exchange of communication in a way that I am failing at. It seems like some kind

of cosmic joke to have come all this way only to have my hearing fail so

miserably.

What I would love to know from you is...will I be able to understand

conversation? I listened to a simulation online and I have to say it really

scared me. It sounds so mechanical, but I've read that it improves with

time...is this so? I have a granddaughter that will turn 1 next month and is

just starting to say words. I so want to hear her voice and what she says to me.

I avoid phone converstation like the plague....will that improve with CI?

I've read about the hybrid CI that has recently been used in US....does anyone

have experience with that? Reading about it, it seems to be something that I

would be a candidate for since much of my loss is at the high frequencies, and I

still have residual hearing.

And I know this is so lame, but I wonder about the aesthetics of the equipment.

How does it all work with hair! I have so many questions, and I know these are

silly concerns.... but they are concerns nonetheless.

I have an evaluation set for July 14 but would like to be as informed as

possible before I get there. Any info, stories, suggestions, advice would be so

appreciated. Thanks for any help you can give me....

June 22, 2009

Hi,

I'll reply to most in personal email back but the " proper source " is the

Companies themselves. The board is filled with very caring and well

meaning people but I've run into instances where people speak opinions

or personal experiences as Facts.

This can be very dangerous for those early in the process.

Also you can talk about brands but should Never disparage another

company because they are all fine organizations that are trying to help

us.

Rest in E-Mail,

Bruce

E-Mail to follow.

> >

> > Hi, my name is Brigid and I just had an appt with audiologist last

week who recommended cochlear implant. I've gotten over the initial

shock, sadness, frustration of having my hearing go from bad to worse

and spent the weekend learning all I can about CI from the internet. Now

I need to hear from you.

> >

> > About my hearing: I have very loud tinnitus that interferes with my

hearing, and a progressive loss in both ears (24% L, 36%R). I tried

hearing aids back in 2004 and hated them. Then again in 2006 and have

been wearing them daily since. In the last year or so, I feel like they

act more as ear plugs than sound enhancers.

> >

> > My biggest frustration comes from wondering how on earth I will be

able to work with this progressive loss. I waited to go back to school

until we were finacially able, and our children were old enough (I'm

47). I got my bachelors in 2004, my masters in 2007, and spent the last

two years becoming licensed.... as a counselor!!! I'm in the listening

business! My job requires talking and an exchange of communication in a

way that I am failing at. It seems like some kind of cosmic joke to have

come all this way only to have my hearing fail so miserably.

> >

> > What I would love to know from you is...will I be able to understand

conversation? I listened to a simulation online and I have to say it

really scared me. It sounds so mechanical, but I've read that it

improves with time...is this so? I have a granddaughter that will turn 1

next month and is just starting to say words. I so want to hear her

voice and what she says to me. I avoid phone converstation like the

plague....will that improve with CI?

> >

> > I've read about the hybrid CI that has recently been used in

US....does anyone have experience with that? Reading about it, it seems

to be something that I would be a candidate for since much of my loss is

at the high frequencies, and I still have residual hearing.

> >

> > And I know this is so lame, but I wonder about the aesthetics of the

equipment. How does it all work with hair! I have so many questions, and

I know these are silly concerns.... but they are concerns nonetheless.

> >

> > I have an evaluation set for July 14 but would like to be as

informed as possible before I get there. Any info, stories, suggestions,

advice would be so appreciated. Thanks for any help you can give me....

June 22, 2009

Hi Brigid,

My name is Carol and oh how well I can relate to your situation. I experienced

very loud tinnitus in my left ear and so they gave me a HA to wear in my right

ear to try to mask the tinnitus. Unfortunately it did very little for me.

Eventually, the tinnitus became overpowering and I could understand very little.

I was told to try a cochlear implant and finally in 2001 I had the surgery for

my first CI in my very worst ear. I could hear (and understand) what was being

said when I was first activated although the sound was weird. Shortly after,

sounds became very normal sounding and soon I was achieving 97% on speech

recognition testing.

Amazing? I thought so because I never really believed that I would hear again.

I was implanted at a large University CI Center and got the best possible

experience I could ever have wished for.

In 2006, I had my " better " ear implanted and have never regretted it for a

moment.

When I am wearing my processors, I experience no tinnitus. That alone is a

blessing which I never thought possible.

With as little hearing as you now have and the fact that you have a progressive

loss, I would question whether you should even consider a hybrid. As your loss

progresses, I would imagine that it would be harder to hear with a hybrid as

opposed to a full array cochlear implant. But of course, that is something an

experienced CI surgeon can better advise you.

Read all you can.... forget the hype of the implant companies (who want to sell

you their product) and the hype of the people who think they can hear well but

really do not. Meet other people who have been implanted if that is possible

and listen to their experiences. After being implanted, some people are able to

hear like normally hearing people. For others, it just makes it easier and less

stressful to hear than they could with HAs. Figure out what your goals are and

how your life can be enhanced by being implanted.

I run a support group for people who want to learn more about cochlear implants

and for people who have cochlear implants to try to help them get the best

possible hearing from them. If there is such a group in your area, it would be

good if you could attend a meeting or 2 to get more firsthand knowledge about

cochlear implants.

Good luck in your journey. I just can't begin to tell you hoe wonderful this

journey has been for me.

Happy Hearing!

Carol

Boca Raton, FL

N24C - Sprint then 3G left ear -12/11/01-upgraded to Freedom on 2/19/08

N Freedom- right ear- implanted 3/01/06 activated 4/6/06

Re: Re: New to Group-lots of questions

>

> Hi, my name is Brigid and I just had an appt with audiologist last week who

recommended cochlear implant. I've gotten over the initial shock, sadness,

frustration of having my hearing go from bad to worse and spent the weekend

learning all I can about CI from the internet. Now I need to hear from you.

>

> About my hearing: I have very loud tinnitus that interferes with my hearing,

and a progressive loss in both ears (24% L, 36%R). I tried hearing aids back in

2004 and hated them. Then again in 2006 and have been wearing them daily since.

In the last year or so, I feel like they act more as ear plugs than sound

enhancers.

>

> My biggest frustration comes from wondering how on earth I will be able to

work with this progressive loss. I waited to go back to school until we were

finacially able, and our children were old enough (I'm 47). I got my bachelors

in 2004, my masters in 2007, and spent the last two years becoming licensed....

as a counselor!!! I'm in the listening business! My job requires talking and an

exchange of communication in a way that I am failing at. It seems like some kind

of cosmic joke to have come all this way only to have my hearing fail so

miserably.

>

> What I would love to know from you is...will I be able to understand

conversation? I listened to a simulation online and I have to say it really

scared me. It sounds so mechanical, but I've read that it improves with

time...is this so? I have a granddaughter that will turn 1 next month and is

just starting to say words. I so want to hear her voice and what she says to me.

I avoid phone converstation like the plague....will that improve with CI?

>

> I've read about the hybrid CI that has recently been used in US....does anyone

have experience with that? Reading about it, it seems to be something that I

would be a candidate for since much of my loss is at the high frequencies, and I

still have residual hearing.

>

> And I know this is so lame, but I wonder about the aesthetics of the

equipment. How does it all work with hair! I have so many questions, and I know

these are silly concerns.... but they are concerns nonetheless.

>

> I have an evaluation set for July 14 but would like to be as informed as

possible before I get there. Any info, stories, suggestions, advice would be so

appreciated. Thanks for any help you can give me....

>

June 22, 2009

Hi Brigid,

You need to talk to your ENT doc about whether or not the Hybrid is an option

for you. Since you say your hearing loss is progressive, that may not be a good

option for you. I have bilateral Meniere's Disease and cochlear impants (CI)

have worked very well for me. Since Meniere's Disease is progressive and

affects the lower frequencies a Hybrid would not work for me. My hearing was

100 to 120 dB down across all frequencies. With bilateral CIs my hearing is now

back in the normal range 0 to 20 dB. Yes, initially cochlear implants sound

very strange, but with time and mappings mine sound like the normal hearing I

had before Menieres. Like Carol mentioned, when my CIs are on they totally mask

the tinnitis. I hope this helps.

Best regards,

Jim

>

> Hi, my name is Brigid and I just had an appt with audiologist last week who

recommended cochlear implant. I've gotten over the initial shock, sadness,

frustration of having my hearing go from bad to worse and spent the weekend

learning all I can about CI from the internet. Now I need to hear from you.

>

> About my hearing: I have very loud tinnitus that interferes with my hearing,

and a progressive loss in both ears (24% L, 36%R). I tried hearing aids back in

2004 and hated them. Then again in 2006 and have been wearing them daily since.

In the last year or so, I feel like they act more as ear plugs than sound

enhancers.

>

> My biggest frustration comes from wondering how on earth I will be able to

work with this progressive loss. I waited to go back to school until we were

finacially able, and our children were old enough (I'm 47). I got my bachelors

in 2004, my masters in 2007, and spent the last two years becoming

licensed....as a counselor!!! I'm in the listening business! My job requires

talking and an exchange of communication in a way that I am failing at. It seems

like some kind of cosmic joke to have come all this way only to have my hearing

fail so miserably.

>

> What I would love to know from you is...will I be able to understand

conversation? I listened to a simulation online and I have to say it really

scared me. It sounds so mechanical, but I've read that it improves with

time...is this so? I have a granddaughter that will turn 1 next month and is

just starting to say words. I so want to hear her voice and what she says to me.

I avoid phone converstation like the plague....will that improve with CI?

>

> I've read about the hybrid CI that has recently been used in US....does anyone

have experience with that? Reading about it, it seems to be something that I

would be a candidate for since much of my loss is at the high frequencies, and I

still have residual hearing.

>

> And I know this is so lame, but I wonder about the aesthetics of the

equipment. How does it all work with hair! I have so many questions, and I know

these are silly concerns....but they are concerns nonetheless.

>

> I have an evaluation set for July 14 but would like to be as informed as

possible before I get there. Any info, stories, suggestions, advice would be so

appreciated. Thanks for any help you can give me....

>

June 22, 2009