Transitioning from HA to CI... how do you know when you're ready to make the jump?

[Watermelon]

I've been researching and reading various opinions and fact sheets on CI to understand how to determine if CI is the right path for me. It seems like the dividing line is "if HA's work well for you, don't bother with CI's. If HA's don't work for you, then get a CI." Also, apparently, there's some CI hype thing too, so I do want to make sure I do what's right for me, and not because of if I'm qualified as a candidate or pushed on CI's. I suppose I'm at a confusing junction in life at the moment.

I have a profound hearing loss in both ears (been that way all my life), which is getting worse in one ear. My audiologist said that I'm already at the limit of benefits that hearing aids can provide me. I'm NR in anything above 750Hz (if I recall - have to find my chart again to confirm) in my bad ear, and I'm just barely registering with my good ear. I still hear some in my bad ear with HA, but it's obviously quieter.

Having an implant is something I'd consider a big step to take. It's not everyday you get something drilled in your skull and an electrode wire stuck in the cochlear. I have oodles of questions, but slowly researching and learning.

I guess my questions for those who transitioned from HA to CI's would be:
How did you know when it was time for you to transition to CI? How do the CI compare relative to HA's for you?

And for those who stayed with HA's but considered CI's:
What made you decide to stay with HA's instead of CI?

Or should I just hold out for stem cells therapy (10+ years?)?

 

[cdmeggers]

For myself, I'm wanting to get the cochlear implant. I'm already a candidate (you have to be evaluated before you're deemed a candidate). I'm going to have my left ear implanted, as hearing aids have been useless in the left for so long now. I will keep using the hearing aid in the right ear and hopefully with the implant things will be more balanced out for me.

stem cell therapy is still very much in the research stages. Yes, may be possible within the next 10-20 years or so, who knows.

Really, it depends on what YOU want. Do you want to wait until stem cell therapy is available, however long that might take, and struggle to hear until then? Or would you rather go for what's available now to be able to hear (cochlear implants are not miracle fixes, it still takes a lot of time and effort to make sense of the world around you once the implant has been activated).

 

[set2]

Hi Watermelon,

I had normal hearing most of my life and over a period of 8 years my hearing went from normal to severe -Profound. I have a CI in my right ear and still wear a hearing aid in the left.

An audiologist suggested a CI evaluation and I spent about 10 months researching CIs and also trying stronger hearing aids as well as assistive devices.

I decided to get an implant because the strong hearing aids were not doing enough for me. With the HAs I was only getting 18% speech discrimination. Having had normal hearing for such a long time I was frustrated because I was having a lot of problems using a phone, watching TV and I could no longer enjoy the car radio. I also wanted to keep working and as a supervisor I realized I needed better hearing for better communication. For me the ci was the right choice.

I chose a CI because I was frustrated and I missed not being able to enjoy things I used to enjoy like TV, movies and the car radio. I wanted to hear better and the implant has helped be to hear better. I thought about hair cell regeneration as well but I wanted to hear better now and I figure I will be dead by the time hair cell regeneration becomes a viable option.

What is important is that you do what is right for you.

 

[deafdude1]

I have a profound hearing loss in both ears (been that way all my life), which is getting worse in one ear. My audiologist said that I'm already at the limit of benefits that hearing aids can provide me. I'm NR in anything above 750Hz (if I recall - have to find my chart again to confirm) in my bad ear, and I'm just barely registering with my good ear. I still hear some in my bad ear with HA, but it's obviously quieter.

If you can find audiogram(s) let us know what your hearing is like so we can further help you. What kind of HAs do you have?

Having an implant is something I'd consider a big step to take. It's not everyday you get something drilled in your skull and an electrode wire stuck in the cochlear. I have oodles of questions, but slowly researching and learning.

That's great! Too many people buy into the CI hype and rush to get implanted. You can do a search for my posts, lots of good advice there.

And for those who stayed with HA's but considered CI's:
What made you decide to stay with HA's instead of CI?

Or should I just hold out for stem cells therapy (10+ years?)?

You can get the answers in my blog, see link in my sig. I am staying with HAs for several good reasons. Two reasons are to preserve my residual hearing and save both ears for stem cells. Yes I look forward to getting stem cells by 2020. More info on that also in my blog. Best regards!

 

[Watermelon]

Thanks, CD Meggers. That is a difficult question that I've been trying to figure out for myself - "do I want to wait, or do I want to hear now? Is my hearing aids still good enough?" To be honest, I do want to hear now, but I don't know if my hearing aids are still good enough. I guess I probably need to take the HINT (Hearing in noise test) or something?

 

[Watermelon]

Hi set2,

Thank you so much for your feedback. I do interact with a lot of hearing people on a regular basis, and frequently over the phone. I do rely on VRS a lot since I can't understand a lot of the foreign accents of my customers. I have talked with my peers in another group (similar jobs) who are also deaf, but do not use hearing aids or CI. They do quite well in their jobs. So it'd be great to actually understand the foreign accents. Most of the US accents I'm ok with if they speak slow enough. Your post does offer a good feedback point, that perhaps I should go ahead and initiate communication with the local cochlear implant medical office and work with them to help answer my other oodles of (medical and technical) questions.

Hi deafdude1,

Let's see if I can do this multi-embedded quote thing right...

If you can find audiogram(s) let us know what your hearing is like so we can further help you. What kind of HAs do you have?

I'm still looking around for it. It's either at home or at my brother's place (my parents were visiting, and I was showing them the latest). I should be able to get another copy Friday (Aug 7) if I can't find it. I'll be visiting my audiologist again then. But, in the meantime, to give you a general picture, it's similar to yours slope-wise, and a bit lower on the curve (NRs start at 750 in bad ear, and I think 1500 in good ear). [Edit]: I'm refering the photo you have in your sig line.

My current hearing aids are Interton IQ-BigNano Twin. They're a couple years old now. It's amazing I can still read the label on it

That's great! Too many people buy into the CI hype and rush to get implanted. You can do a search for my posts, lots of good advice there.

Ok, will do!

You can get the answers in my blog, see link in my sig. I am staying with HAs for several good reasons. Two reasons are to preserve my residual hearing and save both ears for stem cells. Yes I look forward to getting stem cells by 2020. More info on that also in my blog. Best regards!

Even so, there's no guarantee that stem cell therapy would be available by 2020. The FDA might not approve, or it fails on humans for whatever reason, or some other cause. At least CI's should be even better by then if stem cells doesn't pan out. Either way, I'll keep my fingers crossed.

Thanks everyone for your feedback so far. I certainly value it

 

[deafdyke]

do I want to wait, or do I want to hear now? Is my hearing aids still good enough?" To be honest, I do want to hear now, but I don't know if my hearing aids are still good enough. I guess I probably need to take the HINT (Hearing in noise test) or something?

What's your word discrimination when aided? It does sound like you're an ambigious canidate. If you were a right off the bat canidate, I'd be all " Go for it." But, it does seem like some people think that the CI automaticly removes all the disadvantages of being hoh.

I do interact with a lot of hearing people on a regular basis, and frequently over the phone. I do rely on VRS a lot since I can't understand a lot of the foreign accents of my customers. I have talked with my peers in another group (similar jobs) who are also deaf, but do not use hearing aids or CI. They do quite well in their jobs. So it'd be great to actually understand the foreign accents. Most of the US accents I'm ok with if they speak slow enough.

On the other hand, foriegn accents tend to be VERY hard to understand, even for hearing people. If you're doing OK with HAs in day to day life otherwise, I'd stick with the HAs.

 

[deafdude1]

I'm still looking around for it. It's either at home or at my brother's place (my parents were visiting, and I was showing them the latest). I should be able to get another copy Friday (Aug 7) if I can't find it. I'll be visiting my audiologist again then. But, in the meantime, to give you a general picture, it's similar to yours slope-wise, and a bit lower on the curve (NRs start at 750 in bad ear, and I think 1500 in good ear). [Edit]: I'm refering the photo you have in your sig line.

You could always get retested unaided and aided and get the most recent, up to date audiogram. Ive learned alot about this and will be able to offer advice. Any idea where your hearing starts at 250Hz?

My current hearing aids are Interton IQ-BigNano Twin. They're a couple years old now. It's amazing I can still read the label on it

Not familiar with that brand, but if you can find or perform an unaided and aided audiogram, ill have an idea if youd be able to benefit from more powerful HAs like I did.

Even so, there's no guarantee that stem cell therapy would be available by 2020. The FDA might not approve, or it fails on humans for whatever reason, or some other cause. At least CI's should be even better by then if stem cells doesn't pan out. Either way, I'll keep my fingers crossed.

Ive already seen anecdotal cases of deaf people getting stem cells to partially restore their hearing. There's a recent case in my blog and it worked great for him. We will see what happens in the next several years but one should never rush into a CI. At the very least, CI technology will keep improving now and in the near future. Im hearing of 32+ electrodes being available with better speech performance and hearing thresholds.

 

[sr171soars]

...

I guess my questions for those who transitioned from HA to CI's would be:
How did you know when it was time for you to transition to CI? How do the CI compare relative to HA's for you?

1a) When I wasn't getting enough benefit sticking with a HA.
1b) My CI is hands down better than a HA. It has been one of the best things I ever have done.

...

Or should I just hold out for stem cells therapy (10+ years?)?

2) That is up to you. They are nowhere near ready with that option. I figure it will be at least 2 decades down the road. So, the real question is can you afford to wait that long. If you can, great. But if not, you have to decide what is best for you.

 

[overthepond]

CI is better than HA no question... Heard high frequencies for the first time in my life... now can recongise the difference between PIT and PUT without visual. Just under 1 year post switch on.

If you can wait another 10 or 20 years for stem cell without guaratee it would work... good luck, I couldn't wait as would have reached 40/50's by the time it's ready. I am in my prime where I need my ear for commuication at work.

 

[MoonDrifter]

I wanted to get a CI because I wasn't happy with what the HA's provided me. As a result I got a CI a few years ago and I love it.

Choosing a CI or HA is a personal decision and either choice will affect you for the rest of your life.

 

[deafskeptic]

For a long time I wouldn't even consider getting a CI but then I started to have severe recruitment which made it difficult for me to wear my hearing aid for even a few minutes. I came here to post against getting a CI and ended up getting one for myself.

 

[faire_jour]

If you can find audiogram(s) let us know what your hearing is like so we can further help you. What kind of HAs do you have?



That's great! Too many people buy into the CI hype and rush to get implanted. You can do a search for my posts, lots of good advice there.



You can get the answers in my blog, see link in my sig. I am staying with HAs for several good reasons. Two reasons are to preserve my residual hearing and save both ears for stem cells. Yes I look forward to getting stem cells by 2020. More info on that also in my blog. Best regards!

Stem cells aren't even close to human testing, and after showing good research in humans, it could take 10 more years to get FDA approval. I bet we don't see sten cells in our lifetimes. Plus, since there is no human studies yet, why do we think it will even ever work.

Live your life, but why always wait for something better that may come, when something wonderful is already here. You could drop dead the day before the FDA approves, and will you regret having waited for so long?

Also, if you have never heard, and suddenly you get the stem cells at age 50 or 60 (best case) how much benefit are you going to get? Your brain hasn't heard for so very long....

Just my thoughts...

 

[faire_jour]

You could always get retested unaided and aided and get the most recent, up to date audiogram. Ive learned alot about this and will be able to offer advice. Any idea where your hearing starts at 250Hz?



Not familiar with that brand, but if you can find or perform an unaided and aided audiogram, ill have an idea if youd be able to benefit from more powerful HAs like I did.




Ive already seen anecdotal cases of deaf people getting stem cells to partially restore their hearing. There's a recent case in my blog and it worked great for him. We will see what happens in the next several years but one should never rush into a CI. At the very least, CI technology will keep improving now and in the near future. Im hearing of 32+ electrodes being available with better speech performance and hearing thresholds.

Can you give us a link to ANY stem cells being used in humans for hearing restoration please?

Number of electrodes does not equal better hearing.

And what are these magical thresholds you are looking for. You have seen dozens of people with 20 db (and better), what do you think you can get from an unproven, experimental procedure that you can't from a CI (that is 20+ years old, with a long history of great results.

 

[deafskeptic]

Stem cells aren't even close to human testing, and after showing good research in humans, it could take 10 more years to get FDA approval. I bet we don't see sten cells in our lifetimes. Plus, since there is no human studies yet, why do we think it will even ever work.

Live your life, but why always wait for something better that may come, when something wonderful is already here. You could drop dead the day before the FDA approves, and will you regret having waited for so long?

Also, if you have never heard, and suddenly you get the stem cells at age 50 or 60 (best case) how much benefit are you going to get? Your brain hasn't heard for so very long....

Just my thoughts...

You raise some excellent questions here. I remember someone asking about it in another thread. I remember saying that stem cells could happen in my lifetime but that it was unlikely. So I got a CI instead.

 

[vallee]

I guess my questions for those who transitioned from HA to CI's would be: my transition was when I had no usable hearing left and found hearing with a Hearing aid was just oo painful.
How did you know when it was time for you to transition to CI? How do the CI compare relative to HA's for you?CI does not compare. I hear much better and clearer with my CIs then I ever did with Hearing aids.

And for those who stayed with HA's but considered CI's:
What made you decide to stay with HA's instead of CI?

Or should I just hold out for stem cells therapy (10+ years?)? Live today, stem cell is too far off for me. I better we are still having this discussion 20 years from now.

 

[sr171soars]

...
Number of electrodes does not equal better hearing.

...

Er...Actually an increase in the number of electrodes will mean better hearing. More specifically, it will mean better discrimination in hearing as there are more discrete points to differentiate.

Here is the problem CIs have at this time. With "normal" hearing, one has ~30,000 cochlear hairs that can "map" same number of descrete points. This is a one to one ratio. That advantage heavily outweighs CIs hands down especially in terms of all around hearing. Where CIs shine and give enormous potential is that it can do a very good job taking speech and break it down for the user to utilize and understand speech. This is because speech has a narrow bandwidth and it is fairly well understood how to process it.

(FYI - This works very well for non-tonal languages like English, Spanish and etc. Chinese is different as it is tonal and that is harder to "map" out. One needs more discrete points to provide equivalent functionality as those who understand a non-tonal language.)

The real problem with CIs is that for all around hearing, it is still very difficult to come up with solutions that address this issue. Hence, the push for more electrodes that get closer and closer to simulating the 30,000 cochlear hairs. Right now, they programmatically stimulate a wide range using some 22-24 electrodes (Cochlear Freedom). But that is no where near "normal" hearing as of yet.

Some point in the future, they will be able to stimulate 30k discrete points and then CIs will truly have arrived.

 

[deafdyke]

Also, stem cells are more at the maybe it could help/maybe not stage right now.

 

[set2]

Yes, there are risks with CIs but there would also be risks with Stem Cells. What ever process causes haircells to destroyed would have to be controlled or the regrown hair cells would also be destroyed. I would suspect this would mean some pharmaceutical would be needed and who knows what side effects it would have.

It is still unknown what sort of hearing would result from the regeneration of hair cells. Hair cells have been regenerated in guinea pigs but you can't give a guinea pig a word test or do a pure tone test on them. I can picture it though. The guinea pig is in the booth and the CD goes "say the word habitrail".,LOL. On a more serious note, It won't be until human testing which is way in the future that actual hearing results will be determined.

 

[deafdude1]

For a long time I wouldn't even consider getting a CI but then I started to have severe recruitment which made it difficult for me to wear my hearing aid for even a few minutes. I came here to post against getting a CI and ended up getting one for myself.

Funny you asked since im experiencing possible recruitment. However that goes away when the SPL/MPO on my HAs are programmed down. The recruitment seems to take place above 500Hz and it feels like there's pressure/tickling on my eardrum like a qtip pushed in too far.

Stem cells aren't even close to human testing, and after showing good research in humans, it could take 10 more years to get FDA approval. I bet we don't see sten cells in our lifetimes. Plus, since there is no human studies yet, why do we think it will even ever work.

You can find some posts in my blog that discusses stem cells. Those cells aren't just limited to treating deafness but for many other conditions. One guy with MS got stem cells that cured his MS and it greatly improved his hearing, he's no longer deaf either. Ive read some anecdotes about stem cells being tested in humans in secret.

As for FDA approval, we should expect public clinical trials by 2020 and FDA approval 5 years afterwards. Stem cells is already being used today and will become very widespread in the next several years and not just for deafness. It would be great for saving lives.

Live your life, but why always wait for something better that may come, when something wonderful is already here. You could drop dead the day before the FDA approves, and will you regret having waited for so long?

I wouldn't wait if I stopped getting benefits from HAs today. But as long as I have residual hearing, I am saving that because ive read it will greatly improve the chances and success of stem cells for deafness. If one has no residual hearing, they might end up with 100db HL after stem cells. But with residual hearing, they could end up at +20db improvement over whatever they have. If they hear 90db, they can improve to 70db!

Also, if you have never heard, and suddenly you get the stem cells at age 50 or 60 (best case) how much benefit are you going to get? Your brain hasn't heard for so very long....

Just my thoughts...

This is why I would "force" a CI on any deaf children I might have, provided they have no residual hearing or so little hearing they can't hear anything even with the most powerful HAs. If there is enough residual hearing(such as an audiogram like mine) they will hear plenty with HAs and their brains would develop normally, having hear lots of sounds and some speech.

I know this because ive been there myself. Id show audiologists that my children are getting plenty of benefit from HAs, they are welcome to give them audiograms and speech tests. My own audiologist says training your brain is the #1 most important thing, far more important than how much residual hearing you have, as long as you have residual hearing. They will still be young when they get stem cells and hear so much better with HAs.

Can you give us a link to ANY stem cells being used in humans for hearing restoration please?

Its in my blog in my sig. That person made his own blog about his experience.

What are these magical thresholds you are looking for. You have seen dozens of people with 20 db (and better), what do you think you can get from an unproven, experimental procedure that you can't from a CI (that is 20+ years old, with a long history of great results.

Ive seen dozens of people with 40db or worse thresholds. No one knows how well a person will do with CI.

http://www.alldeaf.com/hearing-aids...-cant-afford-2500-ha-but-wants-50-000-ci.html

This person hears at around 50db with CI. Granted this person had no residual hearing so CI is still a big improvement. See audiogram on bottom of post.

I am expecting a 20db improvement with stem cells. Combine this with more powerful HAs and im looking at 0db aided in the lows, 15db aided in the mids and with transposition, 25db in the highs. Ill finally be able to hear unaided since my loss will be moderate(at least in the lows) This will be great when im swimming and someone calls me, ill have sound awareness.

Don't forget that I can repeat the stem cell procedure every few years for additional improvements. The 20db improvement is just the first and you can bet the technology will advance and be able to achieve further improvements. It will get to the point that those with presbycusis can achive enough improment not to need HAs anymore.

Ive said many times that CI is great today for the right person(not so great for borderline candidates) there will be something far greater by 2020