Re: Top 10

May 8, 2003

Here is my top 10 in no particular order:

1- Electrical hearing is NOT the same as acoustic hearing so be prepared

to hear differently if you are late deafened.

2- You may or may not hear speech at hookup

3- Music will NOT be the same and takes probably the longest to learn to

appreciate.

4- You may or may not hear well on the phone

5- Yes, it will work

6- But it will not work just like someone else's works.

7- Be sure to choose an implant center based on how comfortable you are

with the audiologist.

8- Go to support groups and/or stay on the forums to learn from others.

9- Do NOT worry about how many mappings you need because I know someone

who needed more! LOL

10 - The best implant is the one that you are wearing so pick one and

don't look back.

Nuked 9/28/00

Hooked 10/26/00

I SUPPORT OUR TROOPS!

May 8, 2003

1-Noone canpredict how well a person will do

2-It takes patience to learn to use

3-Everyone is unique -some do better than others

4-What works for one may not work for another

5-There have been failures

6-They are expensive but worth every penny spent

7-Insurance coverage is expensive but is a must

8-Follow up is important

9-No two centers are alike as far as hookups and mappings but the end result is

usually the same

10-It is a miracle

Top 10

Hi everyone,

I'm asking for a little help here so if any of you have the time to

answer, I'd appreciate it.

What are the top 10 things you think people should know about cochear

implants in general?

Evenif you can't come up with 10 things.. any will be helpful and

appreciated.

Thanks much,

Silly

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

Great changes may not happen right away, but with effort even the

difficult may become easy.

- Bill Blackman

May 8, 2003

This is a great question Silly and I think we could

tie it into our files later as it could offer good

information at a glance. Here I go with my 10.

1. Do your own homework. This miraculous device

should be yours for life and you need to be happy what

you've chosen. It needs to fit your lifestyle. Don't

listen when someone says that their implant type is

the best. The best implant is the one you wear.

2. Don't expect normal hearing because a CI is a

prosthetic device which gives you understandable sound

and bypasses the normal hearing channels. Expecting to

hear normally is being unrealistic.

3. Try to keep a positive attitude even when you

aren't hearing everything you want to hear. It takes

time to adjust. Remind yourself what you hear when you

take off it off when you are feeling negative.

4. Put yourself in situations where you are meeting

others with hearing loss or have cochlear implants.

Sharing tips and seeing what others experience helps

you to experiment with different techniques.

5. Don't give up after the first mapping. Find

familiar sounds and practice making them sound the way

your recall. Go back as often as necessary because

it's not how many mappings it takes to reach your

goal, it's reaching it that's important. Over time,

if you are not happy with your results, remember,

there's no rule that says you can't find a different

audiologist. Loyalty to your original center could be

a mistake. What is most important is what you do for

yourself to gain better hearing so be reasonable but

make a change if necessary.

6. Let your family and friends be your coaches.

Remind them that you want them to help you hear by

calling you on the phone or talking to you when your

back is turned.

7. Your audiologist is your best friend and your line

to the best possible hearing. Without your input, the

audiologist cannot possibly know what you are hearing

and try to improve the sound. Keep good notes and be

your own best advocate.

8. Use your assistive devices if necessary. That is

why they are provided. Because you have an CI does

not mean you aren't still hearing impaired. You just

have the best possible technology. Doing whatever it

takes to make it work is nothing to be ashamed of.

9. Put the device into the drier pack or a Dry and

Store every night to keep it in the best possible

working order. Use the brush provided to clean off

the contacts.

10. Be grateful for the miracle which is ours to

have. Quality of life is restored and this should

never be taken for granted.

Alice

N24 11/99

N24C 04/03

Bilateral

May 8, 2003

Alice, I really like your Top 10 list! This one I will print out at school

tomorrow to put into my folder that I started today of suggestions,

information, emails from CI users who have some input and so on. I'd make a

list, but I don't have a CI myself so I wouldn't know anything.

CD Meggers

From: Alice <justagram@...>

Reply-

Subject: Re: Top 10

Date: Thu, 8 May 2003 16:40:10 -0700 (PDT)

This is a great question Silly and I think we could

tie it into our files later as it could offer good

information at a glance. Here I go with my 10.

1. Do your own homework. This miraculous device

should be yours for life and you need to be happy what

you've chosen. It needs to fit your lifestyle. Don't

listen when someone says that their implant type is

the best. The best implant is the one you wear.

2. Don't expect normal hearing because a CI is a

prosthetic device which gives you understandable sound

and bypasses the normal hearing channels. Expecting to

hear normally is being unrealistic.

3. Try to keep a positive attitude even when you

aren't hearing everything you want to hear. It takes

time to adjust. Remind yourself what you hear when you

take off it off when you are feeling negative.

4. Put yourself in situations where you are meeting

others with hearing loss or have cochlear implants.

Sharing tips and seeing what others experience helps

you to experiment with different techniques.

5. Don't give up after the first mapping. Find

familiar sounds and practice making them sound the way

your recall. Go back as often as necessary because

it's not how many mappings it takes to reach your

goal, it's reaching it that's important. Over time,

if you are not happy with your results, remember,

there's no rule that says you can't find a different

audiologist. Loyalty to your original center could be

a mistake. What is most important is what you do for

yourself to gain better hearing so be reasonable but

make a change if necessary.

6. Let your family and friends be your coaches.

Remind them that you want them to help you hear by

calling you on the phone or talking to you when your

back is turned.

7. Your audiologist is your best friend and your line

to the best possible hearing. Without your input, the

audiologist cannot possibly know what you are hearing

and try to improve the sound. Keep good notes and be

your own best advocate.

8. Use your assistive devices if necessary. That is

why they are provided. Because you have an CI does

not mean you aren't still hearing impaired. You just

have the best possible technology. Doing whatever it

takes to make it work is nothing to be ashamed of.

9. Put the device into the drier pack or a Dry and

Store every night to keep it in the best possible

working order. Use the brush provided to clean off

the contacts.

10. Be grateful for the miracle which is ours to

have. Quality of life is restored and this should

never be taken for granted.

Alice

N24 11/99

N24C 04/03

Bilateral

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May 9, 2003

Hi , I really like your idea! I have enjoyed reading the

response so far & looking forward to more Great Top 10's! By the

way I will be meeting a CI Receipent on Saturday 5/10 to ask

questions, etc.. After this I guess it will be back to the Dr.'s Office

to schedule my CI Surgery. Have a Great Weekend!

Barry / bbskity

> Hi everyone,

> I'm asking for a little help here so if any of you have the time to

> answer, I'd appreciate it.

>

> What are the top 10 things you think people should know about

cochear

> implants in general?

>

> Evenif you can't come up with 10 things.. any will be helpful and

> appreciated.

>

> Thanks much,

> Silly

> ***************************

>

> Great changes may not happen right away, but with effort even

the

> difficult may become easy.

> - Bill Blackman

May 9, 2003

Hi Barry,

Thanks.. actually this top 10 wasn't my original idea, but it is a

great one. The credit goes to paula on Hearing exchange and I believe

there will be an article coming out on it on Hearing Exchange in the

near future.

Glad to hear you are going to meet with a ci user and have the

firsthand opportunity to talk with someone with ci experience.

Good luck and hope you get a quick surgery date.

Let me know how things go.

Good to hear from you.

Happy Weekend,

Silly

May 9, 2003

As most of you know, I am not even " turned-on " yet...but here are my

personal top 10 reasons for undergoing this bilateral Med-El surgery

on 4-21-03. BunEWabbit

1) I could not understand my own husband anymore as I depended on

some speech recognition along with lip reading for communication.

Once I could no longer hear any speech at all (about 3 years

ago)...it became a daily battle to understand my dear spouse.

2)Sign language did not seem like the best solution as my husband is

hearing, my neighbors are hearing, most everyone at the YMCA,

library, grocery store, and all the other places I love to go are

hearing. I realize there is a wonderful " deaf community " in

Nashville...but to me...it would seem more like a " deaf support

group " as I would not be surrounded by people using sign language on

a daily basis.

3)After much research, I learned that very few people are

disappointed with the Cochlear Implants & the surgery itself is " low

risk " for a surgery. At Vanderbilt Hospital, they considered the

surgery so low of risk that no chest Xrays or blood work was done

even though I was under anesthesia for 6 hours!

4)It would be great to return to college & actually be able to enjoy

the classes. And perhaps someday...maybe even take classes in

foreign languages

5)My hearing loss was causing me to withdraw from people & places. I

dreaded going out to eat with groups, family reunions, worship

services, and other activities where conversations are the main

focus. Sometimes I even found myself feeling down after a simple

trip to the grocery store when not being able to understand the

cashier.

6)It would be great to have a decent job that would require use of

my mind! I know many HOH and deaf out there have achieved this goal

inspite of their hearing difficulties (way to go..I'm proud of

y'all). But I have not wanted to resume my education because I just

find the struggle to figure out what is going on in the classroom

too frustrating.

7)I hope to one day be able to understand children...especially my

two dear neices that sometimes stay the night with us! The girls

could be telling me " the house is on fire " or " they feel sick " and I

would not have a clue as to what they are saying. It has been

frustrating for them as well as myself.

8)Hearing aid molds trap lots of moisture in my ear & make them itch

(minor reason..but still a reason anyways)

9) I've always wanted a wild hairstyle. But was too chicken to do

anything drastic. Now I have a mowhawk! Now thanks to the required

shaving for bilateral implants...this goal has now been achieved.

10) I was in need of a break from housecleaning & cooking! Many

wonderful people brought by delicious food during the first two

weeks after surgery. It felt great to be so spoiled. But alas, the

housecleaning is still awaiting my recovery.

May 9, 2003

Silly Here are the top 10 for CI's

1. You get to meet great people and make new friends on the forums and in chat

rooms. They are awesome and help you go thru your triumphs and challenges with

the CI.

2. No Feedback with the CI. Not like the hearingaids. That is one thing I do

not miss at all. :-)

3. It is truly a miracle.

4. You are hearing sounds that have never been heard or not heard in years.

5.You do have to work hard with the CI and your audiologist to make it work and

to make it successful for you

6. need to do your own research as you will be living with it for your life; it

is your hearing not anyone else's.

7. you can have tons of fun with the CI changing colors depending on your mood

Cant think of anymore right now

--

Snoopy

N24C-bilateral

May 10, 2003

Hello again,It's been interesting reading each and everyone's postings about

surgery, mapping, and esp. about CI moments. It truly gives me a great

understanding of the miracle that CI's proves to be (for the most part, or

more). With mysurgery date set for the 21st, I should just be able to sit back

and be excited about it. However, for some reason, I just am not able to decide

whether I really want to do this or not. I don't know what is lacking that's

not making me go with it full-heartedly. Or am i just having normal pre-surgery

doubts? Another reason I think I keep having these doubts is because of my

present hearing situation..for those that didn't get a chance to tell, my

current hearing in my left ear is 98% sentence recognition and 92% word

recognition with a CIC HA. My right ear is the one that needs to be implanted.

My audiologist at NYU told me that with this hearing left, I could opt for a BTE

HA which is stronger than the CIC and maybe I wouldn't need an implant.

However, two ears are always better than one, which is why I opted for surgery

and set the date. Another reason is my remaining ear's hearing fluctuates bc I

have LVAS, also called EVAS (Enlarged Vestibular Aqueduct), in which the fluid

within my inner ear isn't disposed of properly but floods up in my inner ears

and killed most hair cells. It could go deaf one day like my right ear. An

implant should help me hear again. However, the implant being an invasive and

irreversible step, I just have many " fears " towards it. Like whether getting

this surgery would work for me, am I moving too fast, should I try a BTE hearing

aid first, would I be able to be carefree and not worry all the time about my

ear/head getting hit by accident and causing device failures. These are

probably just some silly things that aren't worth fretting about, but the fact

that they waver my decision bothers me. Iknow I still need to ask my surgeon

questions when I meet him next week. I just wished..grrrrr...that I could be

more sure of what I want to do and of what would be the best for me. I just

have no clue! This is more of a reflective writing where i'm just dumping

feelings on a page. I feel like i need more confidence in this but I don't know

where to get it from. Aren't there signs that tell you what you should do?

Maybe I just haven't seen them yet, even though they are already everywhere.

Then I just hope that I will be guided to see the signs and make the best

decision before time runs out. If it does.. ConfusedSandy sillygirl49677

<silly1@...> wrote:I'd like to add a couple of my own ideas for the top

10 too.

I really appreciate everyone taking the time to list their ideas!

I'm thinking there are so many good answers that this is going to be

more than the top 10!

Here's my adition.

1. If you are considering a cochlear implant, be evaluated by a

certified cochlear implant audiologist.

Many health professionals have no idea as to what a cochlear

implant is, even the most experienced audiologists may tell you a ci

will do you no good if they're not educated in the area of

cochlear implants. Don't take no for an answer until you've been

properly evaluated.

2. Cochlear implants won't work for everyone with a hearing loss. The

auditory nerve has to be in working order which is why candidates are

asked to have certain tests done after their initial evaluation.

That's it for me for now.

Everyone have a wonderful weekend and a Very Happy Mothers Day to all

you special moms.. whether you celebrate it at this time of year or

not.. ALL moms are special at any time of the year!!!

Hugs,

Silly

May 11, 2003

Hi Sandy,

I just read your post and I can understand your

feelings. It sounds as if you are hearing quite well

with your hearing aid and that the doctor thinks that

perhaps that could be improved upon with a BTE since

you are currently wearing a CIC.

I love the fact that I can hear with the CI, but if I

could have heard with a hearing aid, I wouldn't have

even considered the implant. I'm somewhat surprised

that you qualified for a CI with the scores you

reported here but perhaps the underlying condition is

the reason you were able to qualify. Are you sure you

are in the 90% area with the hearing aid you are

already using? Do you not need to read lips to

understand and can someone cover their face or walk

behind you and talk to you and you can hear them? Are

you using the phone with ease in you good ear? How

often are you dealing with the EVAS and what are the

chances that this condition could render you totally

deaf at any moment?

In my opinion, CI surgery is what you do when all else

fails. I'm not trying to lead you one way or the

other but instead thinking strongly that you may be

right in your concerns. This is surgery and any

surgery is risky. If you hear well enough without a

CI...you might want to think about it more and

definitely talk to the surgeon and the audiologist

again before you have it done. I really believe your

medical team would be the best authorities in your

case. If they believe the CI is what you need, than I

can promise you that you likely will be very grateful

for it when you have adjusted to it. Pre-surgery

jitters are normal so if this is the case - they will

pass. I even wondered all the way to the hospital if

I was making the right decision in March. I have

absolutely no doubt now that it was indeed an

excellent one.

Alice

N24 11/99

N24C 04/03

Bilateral

May 12, 2003

hey sandy! what time does the thing start on sunday? is it 6pm or 2pm? :T I

forgot to marked on my calender!

Sandy Chen <cishanghaichen@...> wrote: