Have great HA but being pressured to get CI… very apprehensive

[WeeBeastie]

If audi continues to push, I would start looking for a new audi.

In the end, they are your ears and it's your decision. If they can't honor your choices you should no longer honor them with your business.

 

[deafdude1]

It was back in the early 80s, prior to school. My hearing has always been awful.

CI wasn't even FDA approved for children before 1990. Whoever suggested CI back then was nuts. Weren't all CI single channel as well? You would have heard way worse than your "awful" hearing with HAs. Basically 0% speech and just monotonous beeps! It wasn't till multichannel CIs that they started being useful for any speech understanding as well as ability to distinquish different frequencies.

 

[C-NICE]

History

History of Cochlear Implants

 

[somedeafdudefromPNW]

CI wasn't even FDA approved for children before 1990. Whoever suggested CI back then was nuts. Weren't all CI single channel as well? You would have heard way worse than your "awful" hearing with HAs. Basically 0% speech and just monotonous beeps! It wasn't till multichannel CIs that they started being useful for any speech understanding as well as ability to distinquish different frequencies.

Why you think cochlear implants were so converstial back then? You will find many people who shared the same experience as watermeleon. People don't care about the FDA or any medical regulations. They hear something that might "cure" deafness and lo and behold, they push such ideas on kids.

My parents knew about cochlear implants in 1987. It was pushed on me in 1999, 2001 and 2005 by educators. Thanks God my parents believed in the religious concept of "age of reason." Otherwise I would be stuck with the old cochlear technology-- not hearing aids like I do today.

 

[C-NICE]

Been doing that for years

Didn't they do that with hearing aids way back when? You can also bet when or if stem cells have any great success they will do the same!!!

 

[somedeafdudefromPNW]

Didn't they do that with hearing aids way back when? You can also bet when or if stem cells have any great success they will do the same!!!

Why are you comparing something that can be removed from one's ears any time compared to an invasive surgery highly regulated by the FDA in which people used to try bypass the guidelines?

Please use a better analogy.

 

[C-NICE]

It is the idea

It is the idea of a quick fix. Get the child a hearing aid problem solved. Get the child a CI' problem solved. Use stem cells on the child problem solved. Again any idea that is quick and simple for society so they have do not have to expend any effort on a hearing impaired person.

 

[somedeafdudefromPNW]

It is the idea of a quick fix. Get the child a hearing aid problem solved. Get the child a CI' problem solved. Use stem cells on the child problem solved. Again any idea that is quick and simple for society so they have do not have to expend any effort on a hearing impaired person.

Ah....

HOLY CRAP!

You're right. How many people will fly their kids to other countries to get stem cells without fully understanding the risks so they could undermine the FDA? I got nothing against people wanting stem cells for themselves, or people being treated with stem cells. Just the whole notion of not understanding the limits of technology.

I think a new topic is in order before we pull this off-topic.

 

[deafdude1]

Why you think cochlear implants were so converstial back then? You will find many people who shared the same experience as watermeleon. People don't care about the FDA or any medical regulations. They hear something that might "cure" deafness and lo and behold, they push such ideas on kids.

My parents knew about cochlear implants in 1987. It was pushed on me in 1999, 2001 and 2005 by educators. Thanks God my parents believed in the religious concept of "age of reason." Otherwise I would be stuck with the old cochlear technology-- not hearing aids like I do today.

CIs weren't hyped back then so I am surprised CI was pushed, especially when it's so experimental back then and results were often worse than HAs for anyone with residual hearing. I was always told that you had to be at 0% speech score to qualify for early CI.

Why are you comparing something that can be removed from one's ears any time compared to an invasive surgery highly regulated by the FDA in which people used to try bypass the guidelines?

Please use a better analogy.

He thinks CI is pratically a cure. Everyday he posts 5 new topics on how wonderful CI is :roll:

Ah....

HOLY CRAP!

You're right. How many people will fly their kids to other countries to get stem cells without fully understanding the risks so they could undermine the FDA? I got nothing against people wanting stem cells for themselves, or people being treated with stem cells. Just the whole notion of not understanding the limits of technology.

I think a new topic is in order before we pull this off-topic.

Yea that's kinda wrong to be honest. It's one thing for an adult to make the choice to take the risk but he shouldn't force risks on their children who are too young to understand. I wouldn't give any child stem cells till it's proven safe by many others who get it before. Likewise, once many other adults get stem cells, ill get it myself.

 

[sr171soars]

Thats what I and everyone else is saying.

Just reinforcing the idea.

He may have alot of residual hearing that if he tried newer HAs, he could score too high to be a CI candidate!

If you read it more carefully, I was just answering why he might get a CI if it were beyond hearing voices and environmental sounds...meaning being able to understand speech. You are correct if his hearing threshold is too high then it should be out of the question. Then, this begs the question why the audiologist is even recommending it.

He can hear everything except speech which he gets by reading lips anyway. Is a CI really worth it to score the same as lipreading? I can understand 80% by reading lips and I hear most sounds with my HAs already. Besides, hes wearing old HAs that I got back in 1998. Lets see his audiogram and him trying the best HAs.

Is that all you and others aspire to? I have no need to lipread anymore and I don't except in very noisy environments. I have never felt so liberated from that restriction in life. I can spend more energy productively elsewhere.

There will be much better technology in the near future. Ive said before to check other threads and my blog. I am waiting for that technology.

There is never a time when technology has arrived. It will always be moving on. Compared to where CIs have been in the past, now isn't a bad time to get one. Nobody wins the battle against the relentless march of time. So, the real question becomes how long to wait as one continues to age. I was 47 at the time I got mine and I never regretted it for one second.

I asked this question to my audiologist and he says that's not true! If you get proper fitting HAs that aren't painfully loud, you won't lose hearing any faster than not wearing HAs. I am 27 and my hearing has been stable save for one or two minor drops. I still have my residual hearing! Even if HAs cause me to lose more hearing, by the time that happens, there will be much better technology! What's the hurry as long as you hear with HAs?

27 years old is diddly squat. I started losing more hearing when I was in my mid 30's. I had a HA since I was 3 yrs old. I was talking about the long term effects of a HA. Most people with HAs that I have run into there is that underlying trend that they had to keep getting more powerful HAs over time. Another point, most audiologists are younger and haven't been in the field that long. The older ones who have been around the block might say differently.

I do know that sometimes established medicine has a hard time noticing certain trends under their very noses. I give the example that common sense would have known this and one doesn't have to an expert. Doctors used to think that babies didn't experience pain like the rest of us. So, they didn't sedate babies nearly as much as they should have for surgeries and other therapies. Any parent and especially mothers knew a whole lot better than they did. Finally, it dawned on these idiot doctors (the whole medical community) that babies do have pain sensitivities like the rest of us and started to deal with that better. It took them years and decades to figure this out!

Again, im 27 and no problem here. The pain threshold is 120db so as long as your hearing loss is less than 120db, HAs will work! Let's see his audiogram so we can learn as to the degree of his loss and how much benefit he could get with newer HAs.

There is a point where a HA doesn't work anymore. One needs to decide that for themselves. Given the guidelines for a CIs, no self respecting audiologist will recommend a CI unless the patient qualifies. Even though this audiologist is pushy about it, he wouldn't recommend it unless ToDoorDoNot qualified. Most people can't point blank outright buy a CI without insurance. We know insurance companies will not fund a CI unless these guidelines are met.

 

[Watermelon]

There is a point where a HA doesn't work anymore. One needs to decide that for themselves.

To bring this thread back on track, the above section that sr171soars stated is right on the mark of what ToDoOrDoNot (Shane) should understand and determine for himself. What he's been asking was whether or not a CI is right for him, or his speech perception skills could be trained to be better without a CI.

This thread is sort of similar to my first thread post, about making the jump between HA's and CI's a little while back, and when one knows when they're ready. Truth is, the insight that I've gained from my thread was that just that of the section that I've quoted of sr171soars.

If he's happy with hearing aids, then he should stay with hearing aids. If he's wishing he could do better with hearing aids, then consider newer hearing aids and/or speech perception therapy. If he's finished with hearing aids, where they don't work well, then he could consider CI's, or use nothing at all. If he wants to wait for stem cells (years from now, if/when it happens - that's another debate), then he can do that too.

Just be happy, enjoy life, it's short... don't worry too much!

 

[deafdude1]

If you read it more carefully, I was just answering why he might get a CI if it were beyond hearing voices and environmental sounds...meaning being able to understand speech. You are correct if his hearing threshold is too high then it should be out of the question. Then, this begs the question why the audiologist is even recommending it.

For people like him, there's more to hearing than high speech scores(which he gets by lipreading anyway) he's happy with how much he hears with HAs and that's with old HAs I first wore back in 1998. He may hear so much better with modern HAs and not qualify for CI. The audiologist probably gets a huge kickback referring people to CI. Even one of my audiologists was going to refer me to CI but after seeing I could understand some speech, he thought I might actually not be a CI candidate and he retracted his CI recommendation.

Is that all you and others aspire to? I have no need to lipread anymore and I don't except in very noisy environments. I have never felt so liberated from that restriction in life. I can spend more energy productively elsewhere.

It doesn't take much energy to read lips, ive been reading lips since I was a tot and it's like a first language to me. Wouldn't an excellent lipreader still read lips after CI since it's still easier to read lips and he would understand more speech that way?

There is never a time when technology has arrived. It will always be moving on. Compared to where CIs have been in the past, now isn't a bad time to get one. Nobody wins the battle against the relentless march of time. So, the real question becomes how long to wait as one continues to age. I was 47 at the time I got mine and I never regretted it for one second.

The OP is only 20 years old. There will be much better technology by the time he's 27. For young people like him, there's no urgency.

27 years old is diddly squat. I started losing more hearing when I was in my mid 30's. I had a HA since I was 3 yrs old. I was talking about the long term effects of a HA. Most people with HAs that I have run into there is that underlying trend that they had to keep getting more powerful HAs over time. Another point, most audiologists are younger and haven't been in the field that long. The older ones who have been around the block might say differently.

Good thing I only wear my HAs part time instead of full time like I used to as a kid and teen. There's no need for HAs when im sitting in front of the computer or when im home unless I watch TV or train my ears with online speech tests. People need to be taking care of their ears, even if damaged to prevent further damage! Hearing people have sensitive ears so something at 100db can cause damage within 15 minutes while a profoundly deaf person may barely even hear the same 100db sound!

There is a point where a HA doesn't work anymore. One needs to decide that for themselves. Given the guidelines for a CIs, no self respecting audiologist will recommend a CI unless the patient qualifies. Even though this audiologist is pushy about it, he wouldn't recommend it unless ToDoorDoNot qualified. Most people can't point blank outright buy a CI without insurance. We know insurance companies will not fund a CI unless these guidelines are met.

Youd be surprised. 25% of those who get CI would have never qualified had they tried better/different HAs and got properly fitted/programmed HAs. I know someone who scored 20% speech who tried better HAs and it's now up to 70%. He may be up to 85% if he tries several more HAs. Failing to try every good HA out there is not following guidelines! :roll: Insurance companies need to be more strict, they are spending so much money and this costs us in the form of higher insurance premiums! :roll:

One lady was scoring 55% speech with the wrong HAs programmed improperly. She refused to try better HAs, including transpositional HAs. She had enough residual hearing to get to 75% speech with maximum amplification and transposition! Not only that, she could be hearing better than CI at 1000Hz and below. She actually wasn't interested in CI but her audiologist kept pushing her till she went ahead and got CI. Im sure her audiologist got a huge commission!

 

[sr171soars]

For people like him, there's more to hearing than high speech scores(which he gets by lipreading anyway) he's happy with how much he hears with HAs and that's with old HAs I first wore back in 1998. He may hear so much better with modern HAs and not qualify for CI. The audiologist probably gets a huge kickback referring people to CI. Even one of my audiologists was going to refer me to CI but after seeing I could understand some speech, he thought I might actually not be a CI candidate and he retracted his CI recommendation.

Again, I only was pointing why a CI might be of benefit to him if he wanted to understand speech. If a better HA or better adjusted one does the trick, then go that route. I was never saying get one...as that is up to the individual.

It doesn't take much energy to read lips, ive been reading lips since I was a tot and it's like a first language to me. Wouldn't an excellent lipreader still read lips after CI since it's still easier to read lips and he would understand more speech that way?

You have no idea what you are talking about. Until you are capable to just listening to speech without lipreading, it is what you think not experience.

I have that experience it and lived it each day for the past 4 1/2 years. I would never go back to having to lipreading all the time...not for all the money in the world. It is not worth it. I feel very much in tune to natural speech patterns and miss very little. Lipreaders can't listen to fast paced conversations or those out of line of sight or worst when it is fairly dark if not actually dark out. One misses a lot that way and it happens more often than not.

The OP is only 20 years old. There will be much better technology by the time he's 27. For young people like him, there's no urgency.

Again, doesn't matter about "when" if the decision is best for one at the time of decision. Nobody wins with technology. If he prefers to wait, more power to him. He stills has to decide what he will do and live with it. I would never have considered a CI 4 1/2 years ago if it wasn't at the point it was. The benefits I have had thus far made my decision an outstanding one...technology notwithstanding.

Good thing I only wear my HAs part time instead of full time like I used to as a kid and teen. There's no need for HAs when im sitting in front of the computer or when im home unless I watch TV or train my ears with online speech tests. People need to be taking care of their ears, even if damaged to prevent further damage! Hearing people have sensitive ears so something at 100db can cause damage within 15 minutes while a profoundly deaf person may barely even hear the same 100db sound!

This is irrelevant. Many people with HAs wear them most of the time. The damage is cumulative over time.

Youd be surprised. 25% of those who get CI would have never qualified had they tried better/different HAs and got properly fitted/programmed HAs. I know someone who scored 20% speech who tried better HAs and it's now up to 70%. He may be up to 85% if he tries several more HAs. Failing to try every good HA out there is not following guidelines! :roll: Insurance companies need to be more strict, they are spending so much money and this costs us in the form of higher insurance premiums! :roll:

In the scheme of things, CIs are a drop in the bucket for them considering all the other health issues that dominate their time and money.

One lady was scoring 55% speech with the wrong HAs programmed improperly. She refused to try better HAs, including transpositional HAs. She had enough residual hearing to get to 75% speech with maximum amplification and transposition! Not only that, she could be hearing better than CI at 1000Hz and below. She actually wasn't interested in CI but her audiologist kept pushing her till she went ahead and got CI. Im sure her audiologist got a huge commission!

In this day and age, cynicism is often fairly accurate. I don't believe it to be the case in general for CI centers. I worked with an outstanding CI group and they were very upfront about it and worked with you not against you.

You have to realize that insurance companies are not in the business to spend money for the sake of spending it. I'm sure they would investigate a CI center if they were showing a pattern of recommendations out of the ordinary. As far as kickbacks from the CI manufacturers, that is more believable but it backfires ultimately against them. Too much is at sake here for them and they are better off staying above that business practice. In any case, that is another topic altogether.

 

[dreama]

Ah....

HOLY CRAP!

You're right. How many people will fly their kids to other countries to get stem cells without fully understanding the risks so they could undermine the FDA? I got nothing against people wanting stem cells for themselves, or people being treated with stem cells. Just the whole notion of not understanding the limits of technology.

I think a new topic is in order before we pull this off-topic.

I agree there. It really upsets me when I read about parents sending their blind kids to China to have stem cell treatment. It's not been aproved yet for a reason. It's not safe.

 

[Phi4Sius]

dreama:
I agree there. It really upsets me when I read about parents sending their blind kids to China to have stem cell treatment. It's not been aproved yet for a
reason. It's not safe.

No. They're not approved yet because our retarded (for lack of a more polite term) former President George W. Bush banned ALL stem cell research. We'd probably have a cure for hearing loss (and a host of other diseases and conditions) now if it wasn't for him.

 

[sr171soars]

No. They're not approved yet because our retarded (for lack of a more polite term) former President George W. Bush banned ALL stem cell research. We'd probably have a cure for hearing loss (and a host of other diseases and conditions) now if it wasn't for him.

Er...excuse me but we are not the center of the universe. There are other very capable scientists in other countries. They were doing research while the US couldn't. The fact they still are working on it implies we would be pretty much where they are now. That stuff is still at least a decade or more away from being reality.

 

[Phi4Sius]

sr171soars:
Er...excuse me but we are not the center of the universe. There are other very capable scientists in other countries. They were doing research while the US couldn't. The fact they still are working on it implies we would be pretty much where they are now. That stuff is still at least a decade or more away from being reality.

I never said we were...nor did I imply it. I wholeheartedly agree with you and I'm glad they're able to be so far ahead in other countries. They wouldn't be doing the treatments on human beings if these treatments weren't safe.

 

[dreama]

I never said we were...nor did I imply it. I wholeheartedly agree with you and I'm glad they're able to be so far ahead in other countries. They wouldn't be doing the treatments on human beings if these treatments weren't safe.

They aren't doing tests on human beings in western coutries. They are doing them in 3rd world countries like China which aren't so concerned about health and safety. Doesn't that tell you anything?

I think that there should be ethnical restrictions in research.

 

[Phi4Sius]

dreama:
They aren't doing tests on human beings in western coutries. They are doing them in 3rd world countries like China which aren't so concerned about health and safety. Doesn't that tell you anything?

I think that there should be ethnical restrictions in research.

They are concerned about health and safety just like us here. However, Western Countries are still under the belief system that drugs and pills are the cure and anything else that's available (including all natural cures) is crap and harmful.

And, BTW, they are certainly doing tests on human beings in western countries! Where do you think the hearing loss regeneration tests on 18 month old children are being done? San Bruno, California! Or does this not suspend your disbelief enough? If you'd like more examples of stem cells being done in Western countries on human beings I'll certainly love to provide those. This debate, however, should be moved to a news forum or something to provide adequate stem cell coverage. We aren't allowed to discuss that anymore, remember? I'll leave this as my last post until a new forum is created for such debateable topics.

CBR Center for Regenerative Medicine - Hearing Loss - Cord Blood Stem Cells from Cord Blood Registry