Seriously thinking about getting CI

[kmjbmama]

Hello!! I am profoundly deaf and have been since birth. No one can figure out why I am deaf. Anyway, up til recently, I was very, very ANTI-CI. My best friend who is deaf has had 2 CI's (she got them at age 7 and 13) and rarely uses it now that she is older. Now, I'm going to see if the CI will work for me... The only reason I'm even considering this is because my husband loves music and I have always wanted to be involved in that, but the #1 reason is because of my children (all hearing). I have 4 and their safety comes first with me and I am talking with my doctor who is referring me to a specialist about CI. I am really scared and nervous about this whole thing, but I know it will help me keep my children safe. I guess I just wanted to say hi... There is a CI group here in town that I'm thinking about joining even though there aren't many people in that group. I just feel alone here, since the deaf community here is very anti-CI...

I'm looking forward to making some friends who are postive about CIs!!!
Any suggestions or advice?? BTW, I'm 29 years old so I'm one of these old people who is thinking about getting CI. LOL

kmjbmama

 

[Foxrac]

Hello!! I am profoundly deaf and have been since birth. No one can figure out why I am deaf. Anyway, up til recently, I was very, very ANTI-CI. My best friend who is deaf has had 2 CI's (she got them at age 7 and 13) and rarely uses it now that she is older. Now, I'm going to see if the CI will work for me... The only reason I'm even considering this is because my husband loves music and I have always wanted to be involved in that, but the #1 reason is because of my children (all hearing). I have 4 and their safety comes first with me and I am talking with my doctor who is referring me to a specialist about CI. I am really scared and nervous about this whole thing, but I know it will help me keep my children safe. I guess I just wanted to say hi... There is a CI group here in town that I'm thinking about joining even though there aren't many people in that group. I just feel alone here, since the deaf community here is very anti-CI...

I'm looking forward to making some friends who are postive about CIs!!!
Any suggestions or advice?? BTW, I'm 29 years old so I'm one of these old people who is thinking about getting CI. LOL

kmjbmama

Not really, there's alot of people are pro-CI and neutral, also several are anti-CI {Mod Edit: name of member removed}.

You will get alot of support from them.

 

[Gwyddbwyll]

Hi Kmjbmama,

I'm another one of these old people! I'm 28 and felt quite offended when the doctor said to me "you're really quite old now.." I was also profoundly deaf from birth. My CI surgery is scheduled for September. I guess I should also join the regional CI group but not sure how comfortable I am with that yet. I like using the internet.

You may be a little disappointed when it comes to music. CI's are focused on speech - their software is more about that, than understanding melodies, singing etc. But being able to communicate better with your kids is something valuable. I find children so hard to hear/lipread. Any improvement in speech comprehension I feel will just make life easier.

 

[deafdyke]

Thank you Gwyddbwyll..... while SOME folks can enjoy music with CI, it's probaly about the percentage that are "almost hearing" with CI. It gives you hearing, but not hearing person hearing. I would say that it's probaly 2 dimensional hearing, as compared to 3-d hearing that hearies have.
Before opting for CI, I'd experiment with different kinds of alternative hearing technologies....like the high frequncy transponder thing, or even a body worn aid. I actually think there might be a significent percentage of folks for whom the body worn aid is very effective. You really gotta experiment.

 

[R2D2]

Hello!! I am profoundly deaf and have been since birth. No one can figure out why I am deaf. Anyway, up til recently, I was very, very ANTI-CI. My best friend who is deaf has had 2 CI's (she got them at age 7 and 13) and rarely uses it now that she is older. Now, I'm going to see if the CI will work for me... The only reason I'm even considering this is because my husband loves music and I have always wanted to be involved in that, but the #1 reason is because of my children (all hearing). I have 4 and their safety comes first with me and I am talking with my doctor who is referring me to a specialist about CI. I am really scared and nervous about this whole thing, but I know it will help me keep my children safe. I guess I just wanted to say hi... There is a CI group here in town that I'm thinking about joining even though there aren't many people in that group. I just feel alone here, since the deaf community here is very anti-CI...

I'm looking forward to making some friends who are postive about CIs!!!
Any suggestions or advice?? BTW, I'm 29 years old so I'm one of these old people who is thinking about getting CI. LOL

kmjbmama

Welcome! It sounds like you really want to explore this option and are curious see how things would sound with a CI. If it doesn't work out for you then you can always turn it off and go to bed satisfied that you tried it and gave it a go rather than wondering for the rest of your life "what if..."
I'm not too sure about the lack of support from the deaf community in your area though but would be inclined to say that if they are really your friends they will still accept you even if they disagree with your personal choices.

If it's something YOU want to do then go for it! It does require a lot of patience and hard work but many people are really pleased with what they hear.

Even though you are profoundly deaf did you get any stimulation at all from wearing hearing aids? Or have you never heard sound? It would be helpful to know what your hearing experience is so that we can give you support that is appropriate for your needs.

 

[kmjbmama]

Even though you are profoundly deaf did you get any stimulation at all from wearing hearing aids? Or have you never heard sound? It would be helpful to know what your hearing experience is so that we can give you support that is appropriate for your needs.

I wore those hearing aids the school had years ago... I heard a little but never really benefited (sp??) from it. My parents wanted me to have the surgery when it was popular... turned out that it wouldn't have worked for me so they left it alone until I was in high school My doc called and said they have improved and wanted to see if I was interested in trying again. At that point, I told them that I was happy being totally deaf. LOL My parents were disappointed, but they gave me the choice. I started thinking about it a couple of months ago only because I wanted to be able to hear something if anything happened to my kids. I know it won't make me hearing and that it takes a long time to learn what the sound means. I have a referral in to a CI doctor to have testing done to see if this would help me. I just really hope that it will work... If I get very little out of it... then it's worth it. I have never heard a sound in my life (without a HA) so it's not like I will lose the rest of my hearing if I tried this...



kmjbmama

 

[SxyPorkie]

Hello!! I am profoundly deaf and have been since birth. No one can figure out why I am deaf. Anyway, up til recently, I was very, very ANTI-CI. My best friend who is deaf has had 2 CI's (she got them at age 7 and 13) and rarely uses it now that she is older. Now, I'm going to see if the CI will work for me... The only reason I'm even considering this is because my husband loves music and I have always wanted to be involved in that, but the #1 reason is because of my children (all hearing). I have 4 and their safety comes first with me and I am talking with my doctor who is referring me to a specialist about CI. I am really scared and nervous about this whole thing, but I know it will help me keep my children safe. I guess I just wanted to say hi... There is a CI group here in town that I'm thinking about joining even though there aren't many people in that group. I just feel alone here, since the deaf community here is very anti-CI...

I'm looking forward to making some friends who are postive about CIs!!!
Any suggestions or advice?? BTW, I'm 29 years old so I'm one of these old people who is thinking about getting CI. LOL

kmjbmama

You are old enough to make your own decision to have CI or not.... dont need to worry about others' thinkings..
SxyPorkie

 

[me_punctured]

Oops.

 

[me_punctured]

Hello!

One reason why RD2D questioned you about your hearing experience, I believe, is the concern of your auditory perception. Far be from it me to make rash generalizations about CIs in congenitally and profoundly deaf people who have grown up with minimal auditory feedback or even none at all, but it will be tricky to anticipate about how your brain will adapt to a CI. It takes quite some time for the brain to process sounds that are foreign and alien-- and I say those words intentionally because your auditory perception has not been formed by the majority of sounds hearing people are accustomed to. And since you are already an adult, your brain has less plasticity to cope with the new environment produced by the CI. You may or may not like what you are hearing. What is the the worst scenario that could happen? You will flat-out reject the CI. And the best one? You will integrate it into your life beautifully and even appreciate it.

I don't mean to be a negative, critical tomato, but it is only fair to give you an accurate idea of the reality. At the same time, you seem to have a determined, open-minded attitude about trying new things in the best interests of yourself and your family. Definitely go check out the CI group and talk to the people about their experiences, for starters. It is perfectly understandable that you feel alone because the deaf community in your town opposes CIs. Well, you know something? You are not the only one who feels that way and now that you're at AD.com, you shouldn't feel it anymore.

 

[Oceanbreeze]

Hello!

One reason why RD2D questioned you about your hearing experience, I believe, is the concern of your auditory perception. Far be from it me to make rash generalizations about CIs in congenitally and profoundly deaf people who have grown up with minimal auditory feedback or even none at all, but it will be tricky to anticipate about how your brain will adapt to a CI. It takes quite some time for the brain to process sounds that are foreign and alien-- and I say those words intentionally because your auditory perception has not been formed by the majority of sounds hearing people are accustomed to. And since you are already an adult, your brain has less plasticity to cope with the new environment produced by the CI. You may or may not like what you are hearing. The worst scenario could happen is that you will flat-out reject the CI.

I don't mean to be a negative, critical tomato, but it is only fair to give you an accurate idea of the reality. At the same time, you seem to have a determined, open-minded attitude about trying new things in the best interests of yourself and your family. Definitely go check out the CI group and talk to the people about their experiences, for starters. It is perfectly understandable that you feel alone because the deaf community in your town opposes CIs. Well, you know something? You are not the only one who feels that way and now that you're at AD.com, you shouldn't feel it anymore.

 

[sr171soars]

Hello!

One reason why RD2D questioned you about your hearing experience, I believe, is the concern of your auditory perception. Far be from it me to make rash generalizations about CIs in congenitally and profoundly deaf people who have grown up with minimal auditory feedback or even none at all, but it will be tricky to anticipate about how your brain will adapt to a CI. It takes quite some time for the brain to process sounds that are foreign and alien-- and I say those words intentionally because your auditory perception has not been formed by the majority of sounds hearing people are accustomed to. And since you are already an adult, your brain has less plasticity to cope with the new environment produced by the CI. You may or may not like what you are hearing. What is the the worst scenario that could happen? You will flat-out reject the CI. And the best one? You will integrate it into your life beautifully and even appreciate it.

I don't mean to be a negative, critical tomato, but it is only fair to give you an accurate idea of the reality. At the same time, you seem to have a determined, open-minded attitude about trying new things in the best interests of yourself and your family. Definitely go check out the CI group and talk to the people about their experiences, for starters. It is perfectly understandable that you feel alone because the deaf community in your town opposes CIs. Well, you know something? You are not the only one who feels that way and now that you're at AD.com, you shouldn't feel it anymore.

Yea, I ditto Oceanbreeze's sentiments...

Kmbjmama - me_punctured made a very good point about people in your position adapting to sounds. It can be done but remember you are not used to the "noises" of the world. I think that is probably the most difficult aspect of the whole thing. I personally experienced this myself with my CI. Remember this is from a perspective of a person who always been HOH and had benefitted greatly from HAs (in other words I was quite used to noise). Still for all that, it really surprised me what I didn't hear all those years...

 

[SxyPorkie]

Not really, there's alot of people are pro-CI and neutral, also several are anti-CI like Sweetmind.

You will get alot of support from them.

You are LIAR,,,, in other thread you told that you were forced to have CI when you were little boy... and you hated it,,, you were ANTI CI... too .... I only am against CI on babies and todllers,,, the other than this .. it is ok as long as they make their own decision... You dont need to pinpoint Sweetmind as ANTI CI.... you were one of them...i can get some proofs that you were... i can copy and paste in there to embarass you... you need to stop it..
SxyPorkie

 

[deafdyke]

Great postings everyone!!!! Glad to see we don't have CI salesmen here.
In addition, the CI might only "turn up the volumne" a little. Not literally....I know how CIs work......I'm just using that phrase to express how a CI might increase perception of sound over a hearing aid or other hearing technology.

 

[R2D2]

I wore those hearing aids the school had years ago... I heard a little but never really benefited (sp??) from it. My parents wanted me to have the surgery when it was popular... turned out that it wouldn't have worked for me so they left it alone until I was in high school My doc called and said they have improved and wanted to see if I was interested in trying again. At that point, I told them that I was happy being totally deaf. LOL My parents were disappointed, but they gave me the choice. I started thinking about it a couple of months ago only because I wanted to be able to hear something if anything happened to my kids. I know it won't make me hearing and that it takes a long time to learn what the sound means. I have a referral in to a CI doctor to have testing done to see if this would help me. I just really hope that it will work... If I get very little out of it... then it's worth it. I have never heard a sound in my life (without a HA) so it's not like I will lose the rest of my hearing if I tried this..
kmjbmama

It sounds like you've really thought this through and have realistic expectations You're welcome to stay with us and we'll be happy to support you in whatever you decide. We are a mixed bunch. Some people were born hearing and only went deaf when they got meningitis and then we have someone like Fragmenter who doesn't have (any?) experience of sound but who is thinking about getting a CI as well.

 

[kmjbmama]

Update!!!

Whew!!! It's been taking forever to get things moving for my CI! When I first started thinking about CI, I didn't have a clue on what Medicare was... LOL I always worked and got insurance through my work. Well, I haven't worked since my last baby was born so I didn't have anything. I was going to the Indian Clinic if I needed to see a doctor. I had to go to SSI office and reapply for Medicare since I turned it down the first time they offered it (back when I first started getting SSI) so I had to wait 30 days before it would take effect... Doc told me as soon as I was able, to call him and he would call in a referral, so we did on the 1st of July and he never called back or anything. My mother and I had to go in as a walk in and talk to them to get them moving!! Well, we waited 2 weeks after we went in and still nothing. My mom called the IC and they said the doc never called in the referral so I would need to talk to him AGAIN!!! After another week of playing phone tag with him, my mother finally gave up and called this other doctor that does CI here and guess what??? He said I didn't need a referral!!!! Well, thanks doc! Anyway, since I stopped wearing HAs at age 13, I have to wear their top line HA for 30 days and if that doesn't help me, we will do more testing to see which ear is best and IF it will help or not.

My doc told me that Medicare would pay 70% and I would have to pay 30%. I told him that it was fine with me... Well, when my mom was talking to the other doctor's office, they said that Medicare will pay for EVERYTHING. All I have to do is go in and get my earmolds $ 30 each and wear a loaner for 30 days... and then Medicare will take care of the rest!!!

I have an appointment for next week to get my earmolds done... I am sooooo excited!!! I only wish we had called this other doc a month ago instead of wasting our time waiting around for this stupid referral that I never needed in the first place!!! I am preparing myself for a long process and a lot of training. Even if it helps me just a little bit, it will be worth it... At least, I won't wonder what if... if it doesn't work out.

Sorry for rambling, but I am so excited and need to tell someone! LOL

kmjbmama

 

[netrox]

kmjbmama,

don't want to damp your spirits.

I am going to tell you - you'll probably be in for a rude awakening. What you'll hear with a CI is NOTHING like what you heard with a HA. You'll feel like you have a NEW sense with strange sensations going in your brain.

CI will help you hear but don't expect to understand speech without lipreading. It simply doesn't work. Your brain just lost that part for speech comprehension due to lack of use. Deaf children who got CI before the age of three have excellent speech comprehension without lipreading but if they got it after the age of three, they lose it for good, according to recent studies.

You mentioned about your friends getting CI - they all got CI late and that's why they can't comprehend speech well. If you ask CI kids who got them before the age of three, they are MUCH more likely to wear them and comprehend speech well.

The biggest benefit you may get is improved speech comprehension WITH lipreading. At most, you may understand a few words without lipreading and that's it.

You'll HEAR but it's not going to be simple.

Best luck with your CI!

BTW, I have CI myself and I wear it everyday since 1999. Absolutely no regrets. May upgrade my internal implant soon but I am waiting for more studies regarding new technology.

 

[Roadrunner]

kmjbmama, it's obvious that you are indeed overly excited and anxious to get through this despite the run-around you and your mom were having. Hope all really goes very well once you're fitted and be sure to share with us AD'ers on your progress.

Wishes you all the best!

 

[netrox]

One more thing, a CI does not do well with music. It may sound more tinny and weird. Of course, I love music but don't count on thinking that music would sound like what the hearing hears because it doesn't.

So far, I read that the CII by Advanced Bionics have expanded its processing program to include appreciation for music but the software isn't approved yet. Many CII users with HiRes claim music sounds better and an experimental 120C software (expected to be approved soon) is said to be even better because it has more pitch percepts through virtual channel mapping. How it works is certainly fascinating.

 

[Boult]

kmjbmama,

don't want to damp your spirits.

I am going to tell you - you'll probably be in for a rude awakening. What you'll hear with a CI is NOTHING like what you heard with a HA. You'll feel like you have a NEW sense with strange sensations going in your brain.

CI will help you hear but don't expect to understand speech without lipreading. It simply doesn't work. Your brain just lost that part for speech comprehension due to lack of use. Deaf children who got CI before the age of three have excellent speech comprehension without lipreading but if they got it after the age of three, they lose it for good, according to recent studies.

You mentioned about your friends getting CI - they all got CI late and that's why they can't comprehend speech well. If you ask CI kids who got them before the age of three, they are MUCH more likely to wear them and comprehend speech well.

The biggest benefit you may get is improved speech comprehension WITH lipreading. At most, you may understand a few words without lipreading and that's it.

You'll HEAR but it's not going to be simple.

Best luck with your CI!

BTW, I have CI myself and I wear it everyday since 1999. Absolutely no regrets. May upgrade my internal implant soon but I am waiting for more studies regarding new technology.

as for me it sure does lessen the strain on speechreading though..

 

[angelstar819]

what a nice change of heart!!

glad to hear that more and more ppl are accepting those w/ CI's nowadays..

cuz inevitably, in the future, CI users will continue to increase given how quickly technology is advancing..