Getting CI- Confused not sure what to do

[Fl885]

Hi everyone, I have been visiting this forum for a while and liked the fact that many here are not advertisers for a certain brand, I have been to a forum that is controlled by Advanced Bionic and had horrible experience with them, I have heard that company pays perks and give freebies to mentors and advisors who are mostly either CI users or parents of CI users, I could not get facts from fictions since everything about the people who post there was advertising and false claims, they were so pushy on their brands and never mind if you new there they will keep chasing you until you get set to get their implant.
I have been researching the CI for quite some time, I wanted to see if the CI will benefit me as an adult who lost hearing several years back, I use hearing aids now and function quite good and is able to be in conversation with 2-3 people and use phone ...etc.
My CI audi (not hearing aid audi) tested me and showed that I'm a CI candidate however this did not push me to go the CI route, I continued my research and decided to attend some CI meetings, at one meeting there was several CI users from both brands, none was performing as good as me (me with hearing aids only), they all relied on caption and lip reading, I don't know what was the hearing history of these CI users, they may have been born deaf of whatever, they all were happy about their results which was great, but to me I was confused more and was asking myself is it worth it to go through the pain and suffering and get less results than what I have now with hearing aids? I wanted to know what brand to select, I have not yet find an answer for this question as when I go to Advanced Bionic forum I will find them trashing Cochlear America and praising their implant which sounded fishy to me as some users claim that they hear perfect when in fact they may not, after all, they all seem after one goal, get freebies from AB (Advanced Bionic) and may be get hired by the company later on or whatever, i compared the results of the people I met with AB and Cochlear and found no difference, in contrast I may have found that the Cochlear America users were performing somehow better, but again, these people vary in their hearing history, their results will vary.

I then posted my findings on Advanced Bionic forum and was asking some questions but got trashed by some that their implants was better and so on, they did not like my post and finally I was kicked out of their forum not been able to log in just because I posted my findings which were not scientific but were just from a person that desperately seeking answers to get the CI or not.

All what I want is clear and honest answers from the CI users themselves on what brand they selected and how they are performing now and please DO NOT ADVERTISE for any brand, I did not come here to hear some fake wows from some brain washed people who work in a way or other by some company.

 

[Hohtopics]

Some of the CI users went with the brand their surgeon or CI center work with.

 

[overthepond]

From what i have read your post, it sounds like you are doing ok with HA, and what are the reasons do you want to have CI for? I think CI should be at last resort such as not being able to function with HA's. If you have progressive hearing loss and is highly likely to lose rest of your hearing then it's worth having done perhaps on a worse ear to start off.

I am a CI user, I have always been deaf since birth so my history is different from you and everyone else on here so there is no ears that are same.

I would write pros and cons for each device to decide which device is most suited to your lifestyle.

 

[deafgal001]

Wirelessly posted

CI makes lipreading easier for me. I have cochlear since 2003. It does better than my HAs.



I am born deaf so that's probably why I still rely on lipreading and captioning even though I've been wearing CI religiously since 2003(as I don't know sign language of any kind so I'm very depended on sounds to aid speechreading..so it isn't I don’t try hard or long enough to be as good as hearing people. I've been trying but I accept the results I have today.

 

[Fl885]

From what i have read your post, it sounds like you are doing ok with HA, and what are the reasons do you want to have CI for? I think CI should be at last resort such as not being able to function with HA's. If you have progressive hearing loss and is highly likely to lose rest of your hearing then it's worth having done perhaps on a worse ear to start off.

I am a CI user, I have always been deaf since birth so my history is different from you and everyone else on here so there is no ears that are same.

I would write pros and cons for each device to decide which device is most suited to your lifestyle.

Thanks overthepond for your reply, my regular audi never told me that I was CI candidate not until I started researching the middle ear implant, forgot the name of that device, she is part of HEI (House Ear Institute) and at that time she told me that the middle ear implant is not good for me and suggested CI, I was basically shocked when she said that I thought that my hearing should be gone or almost gone to be a candidate, I went for CI evaluation and the tests were done differently, I could hear noise in the back when they did the speech test, it's like they wanted me not to hear good so I could qualify for CI, remember all of these people (audi at CI, surgeons) make money out of us when we get CI, they will be out of their work if just few people get CI.
While my regular audi and the CI audi told me I will do pretty good with the CI they insisted not to give me any promises and backed off when I wanted to know how my results will be, it's like bait, they take you in and then they back out and let you alone scrambling for answers.

 

[Fl885]

Wirelessly posted

CI makes lipreading easier for me. I have cochlear since 2003. It does better than my HAs.



I am born deaf so that's probably why I still rely on lipreading and captioning even though I've been wearing CI religiously since 2003(as I don't know sign language of any kind so I'm very depended on sounds to aid speechreading..so it isn't I don’t try hard or long enough to be as good as hearing people. I've been trying but I accept the results I have today.

Thanks Deafgal, do you think a different brand would have made any difference, why some brand insist that they are doing better than other, you seem to be long CI user, have you met with other users, same brand, different brand and were you able to see if they have same hearing history as you and if they were doing same, less, better?
Do you hear the words with CI, what do you hear with it, can you please explain more.
Thanks

 

[deafgal001]

Wirelessly posted

I don't think so. Cochlear sounds pretty good. Deaffy is late deafened and he thinks Cochlear sound almost good as hearing.

 

[deafgal001]

Wirelessly posted

If I describe it to you, you'll only hearing from my deaf since birth, hearing aid wear since preschool, prospective and I don't know how that will help you. I am happy with cochlear brand. It gave me the result I expected.

 

[Tousi]

Didn't you already answer your own question when you said something about not getting as good results as you do now with your hearing aids? If I'm not mistaken, you don't qualify for a CI because of the benefit you have with your hearing aids.......unless these companies have changed that major qualifying policy....

Btw, welcome to Alldeaf.....

 

[Beowulf]

Didn't you already answer your own question when you said something about not getting as good results as you do now with your hearing aids? If I'm not mistaken, you don't qualify for a CI because of the benefit you have with your hearing aids.......unless these companies have changed that major qualifying policy....

Btw, welcome to Alldeaf.....

Not really. I have good benefits from my hearing aids, but they said I would get better benefits from a CI, for which I qualify.

 

[deafgal001]

Wirelessly posted

I.think.he was wondering why so many CI users are lipreading/using captioning. To him, it is the same as wearing hearing aids.

 

[Tousi]

Not really. I have good benefits from my hearing aids, but they said I would get better benefits from a CI, for which I qualify.

Sounds like they HAVE evolved with respect to qualifying. Almost from the first time I'd heard of the CI, I was of the personal opinion that I'd benefit from the CI a lot more than those to whom it was limited to. Very recently, Jillio and I were talking about just this in one of these kinds of threads.....

 

[Fl885]

Wirelessly posted

If I describe it to you, you'll only hearing from my deaf since birth, hearing aid wear since preschool, prospective and I don't know how that will help you. I am happy with cochlear brand. It gave me the result I expected.

Thanks Deafgal, I appreciate an honest reply, this what I've noticed when I met some CI users, regardless of the brand, the 7 people I met were happy, 5 of them were Cochlear and 2 were AB, there are so many variables that affect the results of CI, I have heard that the cortex of the brain is a major issue, if you do not hear first few years, the hearing cortex will be used for other things rather than hearing, for example when we are babies we hear noises and things we don't know what they are until our parents or ourselves interpret them as something, like a car horn or a bird singing ..., but if no hearing happens at that time the cortex will be used for other things, this may be the reason why people who are born deaf take long to get results from the CI, not sure.

 

[posts from hell]

The brain is an awesome thing,it rewires itself.

I don't have a CI - but i noticed the same thing Tousi said... If you do well with hearing aids, why get a CI?

To be perfectly frank, many CI users can only do what you can do with hearing aids (and in many cases, less) , and its much more invasive.

If you look up AB recalls, you'd find recalls in almost every year they've been in operation including this year, just saying.

If you want to research "explants" - you will have a hard time finding it, for some obvious reason it is hush-hush. It's all in the FDA website - you can see which brand was having problems. Keep in mind - Cochlear owns about 70% of the CI market, Med-El and AB owns about 15%. So adjust the %'s accordingly.

MAUDE - Manufacturer and User Facility Device Experience
For the link above - I do this: Product Class = Implant, Cochlear
and show the last 500 results.

 

[Fl885]

Didn't you already answer your own question when you said something about not getting as good results as you do now with your hearing aids? If I'm not mistaken, you don't qualify for a CI because of the benefit you have with your hearing aids.......unless these companies have changed that major qualifying policy....

Btw, welcome to Alldeaf.....

Hi Tousi, thanks for the welcome
My hearing is around 90db both ears, I do function ok and somehow good with hearing aids, but I miss my social life as I lost my hearing over 12 years back, was born normal and I'm 35 now, my hearing deteriorated within 2 years to like 70 db and then now 90 db loss. I lip read very well and can use the phone with my Oticon streamer or Hatis headsets.
I thought the CI will give me some good boost in speech discrimination and thought I will depend less (much less) on lip reading, but I'm not sure if this achievable as everywhere I go I find it hard to get answers, I find more reliable answers here compared to some cochlear implants forums, they (at those forums) let it look like you will be getting a new set of ears from the God, they are so pushy and post so many false claims, I was almost sold on until I decided to back off and do more research.

It seems that they are qualifying people for CI these days with 70 db loss and speech discrimination that is less than 40, the weird thing is that the people who decide about wether you qualify for CI or not are those who do the surgery and their salaries are based on us (CI candidates) so basically how would you believe their claims that someone is qualified, take me as an example, they did not do herring test or speech discrimination tests with my hearing aids on, why is that??, if I'm going to function with the CI as HA why the heck would I implant a strange metal in my head, i should be implanted ONLY if that thing will perform better than my HA, I thought these tests were not done right, not that I'm not a CI candidate based on my hearing test, but the fact that they did not test me with the HA is questionable, plus my CI audi wrote in my results that my lip reading skills are poor, holy crap, I thought that I was one of the best in lip reading, how did she decide that I was poor, did she test me without hearing aids?, do they base their findings about lip reading without hearing aids?

 

[Fl885]

Not really. I have good benefits from my hearing aids, but they said I would get better benefits from a CI, for which I qualify.

Beowulf do you have CI now?

 

[posts from hell]

Hi Tousi, thanks for the welcome
My hearing is around 90db both ears, I do function ok and somehow good with hearing aids, but I miss my social life as I lost my hearing over 12 years back, was born normal and I'm 35 now, my hearing deteriorated within 2 years to like 70 db and then now 90 db loss. I lip read very well and can use the phone with my Oticon streamer or Hatis headsets.
I thought the CI will give me some good boost in speech discrimination and thought I will depend less (much less) on lip reading, but I'm not sure if this achievable as everywhere I go I find it hard to get answers, I find more reliable answers here compared to some cochlear implants forums, they (at those forums) let it look like you will be getting a new set of ears from the God, they are so pushy and post so many false claims, I was almost sold on until I decided to back off and do more research.

It seems that they are qualifying people for CI these days with 70 db loss and speech discrimination that is less than 40, the weird thing is that the people who decide about wether you qualify for CI or not are those who do the surgery and their salaries are based on us (CI candidates) so basically how would you believe their claims that someone is qualified, take me as an example, they did not do herring test or speech discrimination tests with my hearing aids on, why is that??, if I'm going to function with the CI as HA why the heck would I implant a strange metal in my head, i should be implanted ONLY if that thing will perform better than my HA, I thought these tests were not done right, not that I'm not a CI candidate based on my hearing test, but the fact that they did not test me with the HA is questionable, plus my CI audi wrote in my results that my lip reading skills are poor, holy crap, I thought that I was one of the best in lip reading, how did she decide that I was poor, did she test me without hearing aids?, do they base their findings about lip reading without hearing aids?

The industry does revolve on money - That is something I've been saying. Crappy audi's are everywhere. You should find another one that you can trust.

Results of implants are hard to find because its very individualized. If I was in your shoes, I wouldnt risk anything. Thats just me.

 

[Beowulf]

Beowulf do you have CI now?

No, I don't. Why should I if I function well with hearing aids? My hearing loss is about the same as yours, 90 db in both ears.

 

[Fl885]

The brain is an awesome thing,it rewires itself.

I don't have a CI - but i noticed the same thing Tousi said... If you do well with hearing aids, why get a CI?

To be perfectly frank, many CI users can only do what you can do with hearing aids (and in many cases, less) , and its much more invasive.

If you look up AB recalls, you'd find recalls in almost every year they've been in operation including this year, just saying.

If you want to research "explants" - you will have a hard time finding it, for some obvious reason it is hush-hush. It's all in the FDA website - you can see which brand was having problems. Keep in mind - Cochlear owns about 70% of the CI market, Med-El and AB owns about 15%. So adjust the %'s accordingly.

MAUDE - Manufacturer and User Facility Device Experience
For the link above - I do this: Product Class = Implant, Cochlear
and show the last 500 results.

Thanks Post, i will check the link, that Advanced Bionic recall is scaring the hell out of me, they say on their forum that because AB is very honest company they care about every detail and that's why they issued the recall not because people were electrocuted from the implant or something more serious, it is sad that these companies reply on fake advertising to make money, this is a medical devise for the God's sake, much like a heart peacemaker why the FDA accept these companies to advertise in a way or another, the hearingjourny forum is anything but crappy advertising for AB, I feel so bad for people who are in research stages, I have seen people join in to that forum and within a month or 2 they would have the implant (some 2 at the same time) this just because they believe what these mentors, advertisers on that forum say, this is wrong, this is misleading, this is unacceptable and it has to stop.

 

[Fl885]

No, I don't. Why should I if I function well with hearing aids? My hearing loss is about the same as yours, 90 db in both ears.

Really, that's encouraging, I appreciate your reply very much