I’d love to get a cochlear implant, but I can’t find an Audi that knows how to program a hearing aid or my BAHA. There’s just zero support. These audis are great prior to the sale, but non-existent after the sale. My favorite is when they tweak something and get so excited and have the nerve to ask you how it sounds in a silent room. I don’t care who you are or what you’re wearing but silence is not hard to achieve. Put some effort in to producing omni directional noise to gauge before asking how do they sound in silence, yet rarely does anyone do that. And the public sector hearing care is significantly worse than private sector, and generally cochlear implants are only available in public sector, your freedom to choose providers is extensively minimized with public sector. I have a baha, and I have to wait 3 weeks to 3 months before follow up visits. Most private sector hearing aid dispensers I can just show up and might have to wait 20-30 min, but eventually will be seen and helped. After going thru what I have with the baha, I have zero confidence sacrificing what I do have for disappointing results. I’d rather adapt than be stuck in the never ending revolving door of disappointing public healthcare system like I am currently trying to do with my baha.
Can cochlear implants, BAHA, etc. be programmed as DIY like hearing aids or does one have to go to a provider for every small adjustment?
Technically I think some people do. But the CI programming is a bit different with the electrodes each being adjustable. Advanced Bionics now offers remote programming which can be more convenient for small changes.
I am a candidate for cochlear implant, but after getting an audiogram/test with hearing aids on the audi determined I did better than one would expect with a cochlear implant.
Additionally there are serious drawbacks to to cochlear implants beyond the ones many listed above:
- Irreversible! If a cure or treatment comes along, that ear is permanently shot
- Risk of affecting your balance
On a side note, reading this thread made less inclined to get some. I had no idea there was that much hardware involved, and they were that visible.
For me music. With a hearing aid I get some level of music sounding (not perfect) but enjoyable. I’ve read too many CI people say music is noise/terrible. Also, so many say they still struggle in noise. I get buy just fine with hearing aids and speech reading. Music is still recognizable and enjoyable. Until I read more CI users say in noise and music hearing is better than aided I’ll stand Pat until the time both are not with aids. Then I’ll take a shot. BTW …my otolaryngologist has been pushing me to go CI for years and I am approved/qualified for one.
You have decent hearing in one ear. Similar to me. With Advanced Bionics, CI and HA, I find music to be much better. The Ab CI and Phonak Link HA work together making the conurbation better than what it would be with either alone or with just HAs. I can’t speak for others, but this brand works for me. I think what people mean with hearing in noise being not great is when comparing it with what they used to experience with normal hearing. Normal hearing is gone. At this point in tech it here is nothing that can return it to normal. Given that, when I use the “Speech in Loud Noise” program on my CI, I can hear pretty well in a loud restaurant as long as I look in the direction of the speaker. Is it as good as when I was 30? No, but at 62, not much is. lol. That’s life. It takes time and in my opinion it also takes a positive approach to the process to have the best outcome. It is worth it completely for me but I speak only to my situation.
Cochlear implants are unaffordable.
For many yes. Paradoxically, for some they’re cheaper than hearing aids because they’re fully covered by insurance.
Agree. For me, the copay for surgery was similar to buying a new pair of HAs so I opted for better hearing!!
I opt against CI because then you are beholden to public sector healthcare which is dismal these days. If i could fine tune the devices myself then I’d consider it, such as you can with hearing aids. Or if there were private sector providers I’d consider it. But in Ohio, you can only get fitted in public sector facilities and seems like everything is 2 months out, even fine tuning, 2 month wait time for my BAHA’s, its a joke. Especially when you go to these public sector audi’s and you can navigate the software better than they can. Or my favorite is when they call the manufacturer and ask them how do they make adjustments. Im familiar with genie software for oticon hearing aids and its literally the same as the baha ponto software but only licensed to “medical” providers and cannot be obtained like the hearing aid software. And when i try to assist the audi’s i’ve seen for my ponto, they get offended or threatened and always hurt someones feelings… At least with hearing aids i have freedom and not beholden to the machine. I can walk into any private sector hearing aid provider and get service, they are happy to help. I have yet to meet a public sector audi thats excited about their job or helping anyone.
I understand most people that do get the implant probably don’t have the luxury of choice. But if I ever get to the point i cannot utilize hearing aids, i doubt i’d consider it. I know way too many people that have been implanted that don’t even use it because it sounds terrible, likely because the audi chose not to do their job. Or the device breaks and cannot get any support for the product because insurance or manufacture doesn’t want to help. From what I’ve seen in my network of deaf friends the long term success rate is pretty small. Granted many couldn’t hear much to begin with so their sacrifices weren’t as extreme as someone that had some degree of hearing aided.
I have bilateral CIs. I got the first one after sudden sensory-neural loss that left me with 17% speech recognition. At that point, fretting about residual hearing was nonsensical. For that matter, so was music. I just wanted enough to hold down a job. Fast forward 10 years and now word recognition is about 97% in optimal conditions— but certainly not that in ordinary life. I enjoy music, but I’m not a musician or audiophile.
Still, the choice is easy: no sound -vs- imperfect sound. It’s easy enough to cope with the times I miss words, and I’m delighted by being able to hear at all.
Mine were covered most recently by Medicare with a $300 cost to me (each).
Considering CIs you can potentially do damage with facial nerves and such, yeah it’s a good thing the software isn’t available to the untrained person imo.
You keep saying public sector but I don’t think you quite understand how you’re misinterpreting it.
With CIs, you have a set timeframe for map sessions. Your brain is elastic but needs time to adjust to any and all new settings implemented. After activation, you’ll have a few map sessions every couple weeks, then every other month then every 6, then once annually. YMMV.
Is there a reason you need to visit an Audiologist (who btw are all pmuch trained in CIs and other hearing devices), more often? I’d imagine if you are needing to it’s because the setting you implement yourselves isn’t quite working out and need a professional to fix.
But I digress, not much can be said to somebody when somehow CIs are inferior and useless as well as the professionals involved in helping users succeed. Just silly to read such a woefully misinformed post.
Now the actual fact is, I am Bilateral. I think they’re a decent option for folks to be able to hear. I’ve worn HAs all my life, I’ve had my CIs for 4, almost 5 years without much issue nor do they break easily. It takes me maybe two weeks for appts and if need be, they allow walk ins. Do I regret any of it? Not the actual CIs but my initial medical team who did the evaluations. I have a new team. Would I suggest it? I think once the value of HAs are done and you get no benefits, then I’d say look into CIs as an option. I’m not going to be a brand cheerleader. I’ll tell you it won’t be easy but it will eventually get better. Would I suggest just going deaf all the time? Highly depends on the support and community you’re in, if not I would not advise it. Many factors involved. I’d suggest joining a CI focused group though on discord, Reddit, Facebook, etc…
Revisiting this thread. Sounds like the end cost (after insurance, etc) is a huge factor, and concerns about things like music being taken away. For my first implant,I was beyond lucky — my employee insurance covered everything. For my second, im in the US and Medicare covered all but about $300.
As to sound, by the time I got my first implant, there was no real risk because there was nothing left to lose. So when I was activated, it was a bit like going from zero to pretty good at the flip of a switch. My surgeon, like many in the field was arrogant and dismissive, but I soon learned that in on-going care, he was out of the loop completely. Fortunately, my audiologist was skilled and professional.
For those who hesitate, I see no urgency that forces a decision. Take your time. Find out what you need to know. If your hearing keeps getting worse, as mine did, you’ll likely get to a point that the decision is sort of made for you.
Do you wish you’d had it done sooner?
MDB not in my case. I pushed for it while I was still borderline for qualifying. I needed better hearing to continue working. Sooo glad I did it sooner than later
@MDB yes, very much so. I regret sitting on the fence for 18 months. Do I, don’t I. Hesitating every step of the way. But so glad I did get my CI eventually.
At that stage I knew no one who had gone the CI route. From memory I was one of the first here on the board to get one. At that stage there was so much ill informed negativity from members. Which turned a tough decision into nearly impossible.
My CI has changed my life, I only wish I could get my L ear done, but with my hearing history it would be unwise.
This is a world wide forum, I’m not misinterpreting the op at all. Where I live we have public sector hospitals, which are basically free, with years to wait for treatment. And private sector hospitals where you pay for private health insurance and can get treatment usually within 4-6 weeks for elective surgery. And immediately for medical conditions.
Yes, I wish I had qualified sooner in order to hear better sooner.
@MickeyCee how are you getting on now that you have gone bilateral CI’s Marcus?
G’day Sheryl,
I’m doing ok with the 2 yeah, thanks. Overall I am hearing much better than what I was with the aids and then with only the one CI and hearing aid (bimodally), which is great! The only thing is is that my right one is the dominant one (done 15 months ago) and it sounds like digital streaming or a CD, whereas the new one (coming up to 5 months) isn’t quite as good in terms of quality, where it sounds like a record being played instead of a CD/streaming. It might sound like I’m nit-picking but I think even still to this day my brain knows and ‘hears’ the dominant ear and the less dominant ear is evident, which is slightly off-putting and a it feels a bit ‘unbalanced’. I’ve mentioned it to the cochlear Audi and after trying a few different things she’s said that hopefully over time I’ll get used to the way it is and she thinks it comes down to the actual placement of the electrodes and the array in the ear, where obviously the right ear is really really good but the newer one, the left, maybe lesser so, where obviously this can’t be altered now.
In saying all that, as I said I’m hearing much better than what I was and have heard in ages, and overall I’m pretty happy with the whole thing.
Thanks for asking Sheryl 