I am OK with CIs in quite a few cases. I don't think anyone (but Hearing Exchange) would call me an anti-CI extremist, but I am just SO SICK of randomly being chatted up by deaf people(like on AIM) who then proceed to talk about NOTHING but the implant and who urge me to look into getting one. It's almost like mass marketing or like a bunch of Asperger's Syndrome people whose obessesion is the CI! That's great that it works well for them, but seriously....some people.....NOT everyone with hearing loss or even with severe profound losses are eligable for the CI. It's also great that it works well for you....but that's like me raving about how well hearing aids work for me.....that's strange....how come you never hear people raving about hearing aids? Well I mean sometimes you do.....like with the MEI (middle ear implant) and digital aids....but still....CIers seem to have a monopoly on that stuff! What does everyone else think?
A rant
- Thread starter deafdyke
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deafdyke: This is something I've also noticed over the past 2 years I've been researching CIs. For whatever reason, many CI users only want to talk about the positive aspects of having a CI instead of being honest/acknowledging the fact that CIs don't work (or aren't the right choice) for everyone. As I was starting to lose my ability to use hearing aids alone for speech understanding I remember many of my family and friends saying, "No problem. If your hearing reaches the point where you can't hear or understand speech, you can just get a CI." Yeah, right. Like the decision is *that* simple. Nope, I don't think so.
I know someone who was activated several months ago. No one warned him about how much different CI hearing is compared to normal hearing or hearing with HAs -- or the fact that he will most likely be unable to understand speech with his CI. As a result, he went into his activation expecting CI hearing to be just like he remembered and worse yet, he thought he'd walk out of the audi's office understanding speech. On the night of his activation he said he wished everyone on the list would have been honest with him and warned him about these things because if they had, he would *not* have been implanted.
It would be nice if there was a website or listserv that discussed some of the problems, frustrations and frustrations CI users face with surgery, activation, mappings, learning how to hear with a CI, etc. (The only listserv I know that comes close to this is ProblemCI.) At least it would give CI candidates a more realistic view of what having a CI is like when things don't work out as planned.
Today I participated in an interpreting workshop which focused on medical interpreting for the deafblind. Including myself, there were two other panelists. One of them had a CI, but could not understand speech and relied on tactile fingerspelling for communication. I, on the other hand, also had a CI, but was able to hear 90% of what was said with an interpreter voicing this information into my left (CI) ear. (The third panelist was born deaf, legally blind and used visual ASL.) This scenario was a perfect example of the fact that not everyone benefits from a CI the way pro-CIers like to think they do.
Too many CI users want to create this happy panasea (sp?) when the reality is that it just doesn't happen that way for most people. We need to see more stories about those who have struggled so that potential CI candidates can use this information to help them determine if a CI is right for them.
I know someone who was activated several months ago. No one warned him about how much different CI hearing is compared to normal hearing or hearing with HAs -- or the fact that he will most likely be unable to understand speech with his CI. As a result, he went into his activation expecting CI hearing to be just like he remembered and worse yet, he thought he'd walk out of the audi's office understanding speech. On the night of his activation he said he wished everyone on the list would have been honest with him and warned him about these things because if they had, he would *not* have been implanted.
It would be nice if there was a website or listserv that discussed some of the problems, frustrations and frustrations CI users face with surgery, activation, mappings, learning how to hear with a CI, etc. (The only listserv I know that comes close to this is ProblemCI.) At least it would give CI candidates a more realistic view of what having a CI is like when things don't work out as planned.
Today I participated in an interpreting workshop which focused on medical interpreting for the deafblind. Including myself, there were two other panelists. One of them had a CI, but could not understand speech and relied on tactile fingerspelling for communication. I, on the other hand, also had a CI, but was able to hear 90% of what was said with an interpreter voicing this information into my left (CI) ear. (The third panelist was born deaf, legally blind and used visual ASL.) This scenario was a perfect example of the fact that not everyone benefits from a CI the way pro-CIers like to think they do.
Too many CI users want to create this happy panasea (sp?) when the reality is that it just doesn't happen that way for most people. We need to see more stories about those who have struggled so that potential CI candidates can use this information to help them determine if a CI is right for them.
Whew......I am glad you agree!!!! I was afraid someone would be offended by my posting this....
True, but I really wasn't thinking about that in my orgional post. I just have noticed too many CIers becoming Asperger Syndrome obssessed with CIs. ALL they want to talk about are their CI moments or encourage people to get CIs...I've even been IMd by random people who start talking about how wonderful the CI is, and how I should get one!!!!
darkangel8603
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I feel that those people often do that cuz they don't want to be looked down or discrimated by other people who are against ci. It just my thoughts I dont know why they do that. But I think its cuz they are nervous and trying to avoid deaf people discrimating them so they encourage and tell their stories to deaf people so they won't discrimiate them as much. Just a thought.
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Gemtun
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deafdyke said:
Perhaps change the feature on your AIM settings so that only folks on your buddy list will contact you, not random strangers.
For me - as Im a CI user, I never never never talk to anyone about getting a CI or my experiences using my CI for the past year. I only tell them if they ask me.
Just to clarify, I am not talking about anyone here....virtually everyone here is very down to earth about CIs. What I am talking about are people at chats and different message boards who are overobessed with CI. A couple of people here, know what I am talking about.
A chat
completely made up, but to give you an idear)
Me: hello
CIObsessed:Hello! Why don't you get a CI? They are so wonderful! You must totally get a CI! They are so cool! I heard my poop drop in the toilet today...could never have done that with hearing aids!
ILOVECIs!: "Yes, CI, CI, CIs!!!!!"
Me: "I am not eligable for CIs"
TotallyInLoveWithCIs:"How do you know? We love CIs...CIs...CIs CIs!"
A chat
completely made up, but to give you an idear)Me: hello
CIObsessed:Hello! Why don't you get a CI? They are so wonderful! You must totally get a CI! They are so cool! I heard my poop drop in the toilet today...could never have done that with hearing aids!
ILOVECIs!: "Yes, CI, CI, CIs!!!!!"
Me: "I am not eligable for CIs"
TotallyInLoveWithCIs:"How do you know? We love CIs...CIs...CIs CIs!"
Deafdyke, I understand completely what you mean. I do think that some people has a certain obsession with cochlear implants. Like you, I'm okay with the technology but I do think that it is overused and many "candidates" are not truly qualified to begin with.
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Banjo: You said: "Like you, I'm okay with the technology but I do think that it is overused and many "candidates" are not truly qualified to begin with."
Can you explain what you mean by this? By "truly qualified" are you referring to a person's degree of hearing loss, speech understanding/discrimination, psychological make-up? Just curious because more and more people with severe hearing loss (i.e. 70 dB) are deemed good candidates for CIs.
Can you explain what you mean by this? By "truly qualified" are you referring to a person's degree of hearing loss, speech understanding/discrimination, psychological make-up? Just curious because more and more people with severe hearing loss (i.e. 70 dB) are deemed good candidates for CIs.
Hear Again said:Banjo: You said: "Like you, I'm okay with the technology but I do think that it is overused and many "candidates" are not truly qualified to begin with."
Can you explain what you mean by this? By "truly qualifed" are you referring to a person's degree of hearing loss, speech understanding/discrimination, psychological make-up? Just curious because I've read several instances where people with severe hearing loss (starting at 70 dB) were considered implant candidates. CI candidacy varies from center to center, but I'd like to know your thoughts on this.
Degree of hearing loss, speech understanding/discrimination, psychological make-up... all of these you mentioned should be determined.
Self-motivation is also a huge factor in my opinion. If one is not motivated enough, then the surgery shouldn't be an option.
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Banjo: I agree with you about the importance of self-motivation. Too many people think CIs are a miracle cure for deafness that will give a person normal hearing. Sure, CIs can help a severely HoH or deaf person understand speech and help them hear sounds they wouldn't otherwise, but there is also alot of work that needs to go into understanding what one hears.
I edited my last post because I wanted to also mention that I'm seeing more and more people with severe hearing loss (starting at 70 dB) being implanted. I wonder if this is a recent trend?
Too many people think CIs are a miracle cure for deafness that will give a person normal hearing. Sure, CIs can help a severely HoH or deaf person understand speech and help them hear sounds they wouldn't otherwise, but there is also alot of work that needs to go into understanding what one hears.I edited my last post because I wanted to also mention that I'm seeing more and more people with severe hearing loss (starting at 70 dB) being implanted. I wonder if this is a recent trend?
AMEN!!!!!! Speech understanding canidacy should be WITH hearing aids, and in quiet settings!!!!!! I've heard of people getting implanted b/c they want better speech understanding in difficult listening sittuions or whatever.....There's nothing wrong with folks who really need it, being implanted....BUT IEYEYEYEYE...I wonder too if it might have something to do with the fact that implants are covered by insurance and aids aren't.
Psychological makeup should also be a determinit!!!!! I just see so many parents of deaf kids opting for the CI b/c it seems so healthy and normal!
What next.....people with unilateral loss or very mild/slight losses being implanted?
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deafdyke: I hate to say this, but I've read that the FDA is considering approving CIs for unilateral losses.
As for CI evaluation testing...I was tested in a quiet sound booth with my hearing aids and Comtek FM system. Because my left ear fluctuated between a profound and severe-profound loss (due to allergies/blocked Eustachian tubes), I was put on allergy medication for a month to see if this stabilized my hearing. (We discovered that my loss was profound without meds and severe-profound on meds.) My hearing test took about 3 hours to complete and I must say the testing was quite thorough!
I agree that it's not enough to say someone (particularly a child) needs a CI just because they have trouble hearing in noise. People with normal hearing have the same difficulty, so this isn't exclusive to those with hearing loss. A CI won't necessarily help a person hear better in noise. Although I hear *much* better with my CI than I did before with HAs, noisy environments still post a challenge for me -- especially if a person isn't speaking to me from my implanted side.
I wouldn't doubt that parents (and adults) probably choose CIs over hearing aids because insurance won't cover HAs. I know two people who wore ITE (in the ear) aids and qualified for a CI. Because their insurance company wouldn't cover new BTEs (which they would most likely benefit from), they were allowed to be implanted. I always understood CI candidacy to mean that a person receives little or no benefit from the most current BTE hearing aid and FM/ALD technology available. Obviously that wasn't the case for both of these individuals.
One of the problems here seems to be the fact that candidacy criteria varies from center to center. Some surgeons and audis are more relaxed about candidacy criteria while others are not. Some CI centers have psychologists on staff while others do not.
There needs more consistency in candidacy guidelines to ensure that the most appropriate candidates (whoever they are) are implanted. The system will never be perfect, but at least this would be a positive move in the right direction.
As for CI evaluation testing...I was tested in a quiet sound booth with my hearing aids and Comtek FM system. Because my left ear fluctuated between a profound and severe-profound loss (due to allergies/blocked Eustachian tubes), I was put on allergy medication for a month to see if this stabilized my hearing. (We discovered that my loss was profound without meds and severe-profound on meds.) My hearing test took about 3 hours to complete and I must say the testing was quite thorough!
I agree that it's not enough to say someone (particularly a child) needs a CI just because they have trouble hearing in noise. People with normal hearing have the same difficulty, so this isn't exclusive to those with hearing loss. A CI won't necessarily help a person hear better in noise. Although I hear *much* better with my CI than I did before with HAs, noisy environments still post a challenge for me -- especially if a person isn't speaking to me from my implanted side.
I wouldn't doubt that parents (and adults) probably choose CIs over hearing aids because insurance won't cover HAs. I know two people who wore ITE (in the ear) aids and qualified for a CI. Because their insurance company wouldn't cover new BTEs (which they would most likely benefit from), they were allowed to be implanted. I always understood CI candidacy to mean that a person receives little or no benefit from the most current BTE hearing aid and FM/ALD technology available. Obviously that wasn't the case for both of these individuals.
One of the problems here seems to be the fact that candidacy criteria varies from center to center. Some surgeons and audis are more relaxed about candidacy criteria while others are not. Some CI centers have psychologists on staff while others do not.
There needs more consistency in candidacy guidelines to ensure that the most appropriate candidates (whoever they are) are implanted. The system will never be perfect, but at least this would be a positive move in the right direction.
That doesn't surprise me that someone with ITE aids would qualify for CI....I wore ITEs and switched back to BTEs....the difference is night and day! And I only have a moderately severe loss. That's why I think there might be some cases where someone could get just as much benifit from using a body worn aid. I think I might feel a little more comfortable with the high number of people getting implanted, if there was a way that you could trial the CI before implantation.
Oh, and actually I wonder if the amount of people being implanted has been kinda exeggerated (sp?)...I remember reading on a certain site that shall not be named, that only a small amount of those eligable to be implanted, have actually been implanted. It could be b/c of our health insurance crisis...a lot of people don't even have insurance....that's one upside of the health insurance crisis....it's a HUGE downside (increased out of pocket health care costs) that a lot of experts tend to gloss over....Oh well 
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deadyke: Being able to trial a CI before implantation would be great! If I remember correctly, this can be done with the BAHA. To some extent it can also be done with an MEI (middle ear implant) in a sense that the speech processor is semi-activated a few weeks before a "full" activation takes place.