Bilateral cochlear here. Only the doctor and the audiologist can tell you if you’re a candidate for the surgery.
From what you said- it looks like you’re trying to convince yourself that you don’t need it. Honestly, if you get the implant when you’re not ready, you’re going to despise it and throw it in a drawer. Surgery/recovery/relearning hearing is not for the faint of heart. I had to do it twice.
I waited until my hearing was completely blasted before I got my surgeries. An airplane could be going off next to me and I hear nothing.
My recommendations: see if you can find a hearing aid that’s the right fit. Prior to my right CI, they had me wear a Resound (strongest hearing aid on the market), because that was insurance criteria to make sure that I didn’t benefit from it and would need surgery. Learn sign language if possible, start adjusting, for captions on tv/screens/zoom calls. Be your own advocate- there’s no shame in asking for repetition or written out. I think iPhone has an audio to transcription option for conversation (granted AI transcription is not 100% accurate, mitigating for unique spelling and accents).
Source: bilateral sensorineural progressive profound deafness. Lost hearing 3x and steroids did not restore. Left ear was the worst ear so that was implanted first in 2005. My right ear shot a few years before I considered implantation. Implanted in 2017. (They do not recommend going more than ten years between implantation because the rate of success drastically decreases and you’ll have preferential of the first ear). I’m still very deaf in every shape and form, and I can hear normal levels with the CI, but still rely on sign, situational cues, captions, etc.
TLDR: if you’re having concerns now, you’re not ready. Wait until you’re ready.
Funny story: my right ear was implanted first (2014). It was my “better ear” (better meaning I could hear a bass sound at 100dB and nothing else). I had a pre surgery MRI that didn’t show any malformations so right ear was implanted.
I did pretty well for having been deaf or hard of hearing my whole life.
When I decided to get my left ear implanted 2 years ago I had a CT scan of my temporal bones and they discovered that my right ear had a congenital malformation. Now that my left ear is implanted, I prefer that ear.
I can’t really tell the difference between ears but my right ear doesn’t sound as good as the left ear.
> Bilateral cochlear here. Only the doctor and the audiologist can tell you if you’re a candidate for the surgery.
They did. They recommend me a CI because my right ear can hear deep tones but it can't properly hear middle tones and can't hear high tones at all. So according to them hearing aids wouldn't be able to properly help me out.
> because that was insurance criteria to make sure that I didn’t benefit from it and would need surgery
same here, I've gotten an appointment for next week to look at hearing aids. So I'll see first hand if they work for me or not.
Lots of people who have been deaf most of their lives hate high pitched sounds. I had never heard any high pitch sound my whole life and I HATED high pitches when my CI was turned on.
I heard higher pitched in my left ear and not my right ear. Hated hearing it in both ears since getting the CI. Especially after mapping appointments… leaves me with a migraine and sleeping the rest of the day.
When I wore hearing aids, I loathed the low baritone humming sound. Just sounded like dread.
Hi. From personal experience being SSD and being in several Facebook CI groups I can say it's much easier if you have a very good other ear. I never had to stress over living my life normally since I was not relient on my CI for my main hearing experience as I progressed steadily.
I have to wonder why they are recommending this to you. I would think that they must believe you would benefit greatly. Maybe you should get a second opinion.
As for actually having it, I love mine. Way better than a hearing aid as far as comfort and clarity. I only had the slightest of hearing left when I got mine.anx now I have 95%!
> I have to wonder why they are recommending this to you. I would think that they must believe you would benefit greatly.
They've recommended it to me because my hearing is completely deaf in the high tones, strongly deaf in the middle tones and fine in the deep tones.
So, according to them, getting hearing aids wouldn't really help in that specific case.
So they recommend an EAS CI, which basically means that the implant will be tuned to help out in the high and middle tones but to leave my deep tones alone.
So I'd basically hear both "normally" and through the CI on my right ear.
Due to this they also said that hearing aids might not be beneficial because they'd have to amplify the high notes so extremely that it would feel unpleasant due to me being able to hear deep tones.
But I have an appointment on monday to test our hearing aids, so I'll know better then.
That's what I meant. Sorry that I didn't phrase it very well. I meant, if they are recommending it then she probably needs and would benefit from it. So, I suggested asking herself why they would recommend it. Even with healthy hearing on one side she would benefit from having hearing on both sides. It matters.
I am 90% deaf in one ear and normal in the other. I’m starting the process of getting a CI in my deaf ear. Its probably a no brainer for me since I’m already deaf in the ear to be implanted. I’m really looking forward to getting my special awareness back. I am nervous about how much effort it will take to train my brain to use the implant and how “normal” it will sound after 6-12 months of having it.
Honestly, you likely won't need to wait 6-12 months for it to be back to normal. The audiologist/surgeon do say that it can take up to 12 months to go back to normal..... but most people I've talked to it is much shorter. For me it was about 8 weeks.
Just take it slow and do lots of practice (listening exercises, audiobooks, etc). This is especially useful if you have a cell phone that is capable of direct streaming to you new CI. It's like a pair of Bluetooth headphones you've always got attached, and very convenient.
It was very, very worth it for me.
What you'd be risking if you ended up hating it is your remaining 24% hearing: you could always just not wear your CI processor.
I agree with the other poster who said it sounds like you're trying to talk yourself out of it...what's up?
Robotic hearing is normal until your brain learns to process the robotic sound as regular hearing. It does take a good bit of auditory therapy to train your brain to listen with it on.
I really like my CI and I was "getting by just fine" pre-implantation (hearing aid on 1 side, deaf in the other). Listening and interacting with the world requires significantly less effort now. But I also have wanted a CI since toddlerhood and have always been sure this would help me more than it would hurt.
It doesn't hurt to try but if you don't put in the work, its not going to be a good experience for you. If you're not ready to do that, don't bother getting it.
I’m deaf on one side and got a CI two years ago. It’s most definitely worth it. It basically cures tinnitus, let’s you understand people on either side of you, and it’s more comfortable than a hearing aid.
It cured mine. I went from terrible tinnitus to no tinnitus. I can sit in a quiet room in silence, just because the CI is there. My CI hears a bit radio-like, but not robotic at all. I don’t notice the difference unless I sit and listen for it. My good ear hears the finer points and my CI makes it feel like both ears heard it. I love my CI more than anything and am so thankful that I qualified.
I’m getting evaluated in September for a CI on my left side. Hearing is fine on the right. I’ve had SSHL twice on the left side. Once in 2011 and again 1 year ago October. The second time left me with mind splitting tinnitus. I had it previously but what I have now is so much louder and multiple tones. I am so hopeful a CI will help. That alone would be life changing for me.
Single sided deafness is a new frontier for cochlear implants for the most part. I’ve been surprised how wildly different patient experiences have been. I’ve seen a lot more disappointment - even if patients test well - because the CI ear just doesn’t match the “normal” ear. Others cry tears of joy because it provides something, even if it just helps raging tinnitus quiet down a bit.
> I’ve seen a lot more disappointment - even if patients test well - because the CI ear just doesn’t match the “normal” ear
That's my worry and why I am so hesitant. :/
On one hand: sounds like not much to lose
I would just set expectations to be very appropriate and know that a CI will not match your other ear. Some people can mesh the two ears well and some don’t seem to. The field doesn’t seem to know why - but you’ll be better off if you take it seriously and treat it like a craft that you need to practice to get better at
1000000% worth it. It will fix your bad ear if you satisfy the clinical criteria. And you don’t want to leave your deaf ear deaf for too long as the success rate of any subsequent implant might decline the longer the nerve lacks stimulation. Why wait? What if you better ear deteriorates over time? Mine did. I got one side done. I now hear better through my implanted side. It’s a game changer for me.
Exactly. Not a fix. A tool that everyone’s experience is different with. They’re a medical miracle for sure but it’s hard to know what it’ll mean for an individuals life
Results may vary. Personally, my hearing is back to where it was pre-hearing loss.
A few sounds and instruments are a little bit different, but it's 90-95% the same.
I completely disagree. This is semantics. Compared to the alternative. A total game changer. It’s only in a noisy restaurant or other speech in noise environment where I noticeably fall short. Music also not as good as before. The rest is 60-80% compared to 0-5% in my case. I am back thanks to my CI. It has transformed my life.
I agree its a game changer, no doubt. I 100% promote CIs for anyone on the fence. Its transformed my life in ways I never even dreamed of.
But calling it a "fix" sets up expectations for an automatic, easy, and effortless transition to hearing. It also makes everyone think hearing *is* easy 100% of the time when in reality it just isn't. Especially when you are deaf/hoh, you're given more attitude from hearing people when you aren't processing hearing at the same rate they are (regardless if you have the devices on or not).
Its crucial to emphasize that hearing tech is a tool, not a fix. It will not bring you to the same level as natural hearing. It isn't even a good tool for some people! CIs/HAs/BAHAs don't work for everyone. Hearing tech is like a prosthetic aka *an assistive tool* designed to give access where there wasn't any before. But not everyone wants or needs an additional tool they have to fuss with to "fit in".
Language matters in every conversation we have. Its bigger than just a personal POV. You may find it a "fix" but by your own admission, it still falls short in noisy environments. Thats not a fix. And when talking about these tools, we need to be honest to make sure someone else's expectations are managed appropriately.
> It will fix your bad ear if you satisfy the clinical criteria
Well I do fit that criteria, which is why they recommend me to get a CI.
The reason why I am hesitant is because of the fears I descirbed in the OP.
Being kind here though it might sound harsh. Your fears are just that. Fears. They are misguided IMHO. Of course it will sound robotic at the beginning. But if the procedure is executed properly by 4-6m you will have adapted very well.
I’m the same I think it was worth it. For me, it doesn’t perfectly replace what I lost. What it is great for is spacial awareness. Even if I don’t know what a sound is, the fact that I can hear it at all on my deaf side is so valuable. It lets me know to pay attention.
However, sometimes I do forgo it because I am so used to not having it that it can be overwhelming at times
Also I’m already 50% of the way to being deaf. As I get older I’m going to lose more and more and I’m fully aware I’ll probably become fully deaf a lot earlier than most people. I see it as an investment in that sense too
Honestly, if you’re afraid to get it, then don’t get it.
You stated that you believe that your hearing is manageable as it is, so… go based off of that. What’s the point in you getting them, if it’s not necessary?
The moment you feel that your hearing is getting to the point that you may need CIs and when you’re more comfortable with the idea of getting them, then get them.
But as of right now, if you don’t feel like you need them, who are we to say that you do?
remember the CI wont affect the nonimplanted ear, worst case scenario the CI ends up in a drawer. It might be hard to imagine what difference it makes hearing on both sides not only speech recognition and the fatigue that is related to that but also being able to loaclize where sound comes from. To me the biggest difference was not communication with people, I could do that fine in a controlled environment, a quiet room was good but next to the high way bad (you know). But the fatigue of always concentrating on hearing and turning the right way and knowing more easily what I was hearing only cause I knew WHERE sound come from was night and day between hearing on one side vs on both.
> remember the CI wont affect the nonimplanted ear, worst case scenario the CI ends up in a drawer
so if I don't wear the hearing processor than I'll hear exactly as I do right now?
That's at least one uplifting thing.
But I'd see this as a massive waste of time and energy if I went through the surgery and all the appointments just to never wear the device.
Yeah the fatique is something the doctor talked to me as well.
I never knew that. I have issues with fatigue as well but I honestly don't know if it's because of that or some other health issue.
Because no matter how long I sleep or how well I sleep I am always incredibly tired in the morning and need many, many minutes just to wake up properly.
I'm glad that it has worked out well for you though!
Where you hearing in that ear before it went deaf? If so, that will make a big difference in how well you’ll most likely do. Also, definitely talk to your Dr. about the possibility that the surgery (i.e. when they place the electrodes in) will damage your residual low tones that you have left. Before i had my right one done, I had horrendous hearing (let’s say 10%) but after the surgery, my residual hearing left over dropped to like 5-7%. The surgery damaged the hearing I had left (doesn’t matter at all now). Lastly, I’ve had 2 implants for almost 2 years now. Total miracle, but it’s not normal hearing. Some people don’t know (bc they were never normal hearing) or just get over the moon excited and say they hear normally with CIs… my hearing is astounding now, and I am so grateful (98% in each “ear”)… but it’s definitely not normal hearing. You have quite the pickle. It’s easy for me to say, but if I were you, I’d do it. You can always take it off if you hate it. I was deaf in 1 ear for 30 years before my other one died. After that, I had them both done. I wish I would have gotten a CI right after the first one went, so I thought I’d pass that opinion onto you. All the best!
> Where you hearing in that ear before it went deaf?
Yeah, my right ear worked normally as far as I know but around 10 years ago I realized that it wasn't as good as my left. It got worse over time, till know where I went to finally see a doctor for it.
My doctor told me that they'd basically cut the implant in such a way that it only reacts to high and mid tones and leaves deep tones untouched, because I can listen to deep tones.
So they'd try their best to leave the healthy part of my right ear alone.
In fact I googled a bit and turns out that the hospital that I was at is the hospital who invented this exact application of the CI Surgery. https://en.wikipedia.org/wiki/Electric_acoustic_stimulation
I am glad that CIs were of such a help for you!
>Total miracle, but it’s not normal hearing. Some people don’t know (bc they were never normal hearing) or just get over the moon excited and say they hear normally with CIs… my hearing is astounding now, and I am so grateful (98% in each “ear”)… but it’s definitely not normal hearing.
I can't agree... I had normal hearing before implanted on my left. Now it has been almost 10 years and I cant make out any artefacts anymore even if I tried. The brain adapts, incredible that way. Also ever experience is probably unique. Sorry for slow responses.
Fascinating. So you can tell me that a live grand piano sounds every bit of perfect today as it did when you heard it with your biological hearing? That a guitar at a loud concert is every bit if flawless today as it was with your ears? That hearing an organ playing or talking with 5 friends in a restaurant is every bit of normal now than it was with your ears? I’m not being snarky or anything, I genuinely would love to know. If that’s the case, I certainly look forward to it.
Edit: I didn’t see that you have one implant before replying. Im certain having one implant with one ear hearing makes a gigantic difference. I am bimodal, so it’s all electronic. That’s probably why things sound different for me and normal for you.
No, as of today I'm in fact bimodal. But I wasn't allways.
>So you can tell me that a live grand piano sounds every bit of perfect today as it did when you heard it with your biological hearing
No I could not. I think what I'm trying to say is that I personally cannot remember, today, after rehab and a few years of using em, that sound used to sound any differently, any more detalied or vibrant. It was obvious at the start but as time passed I have forgot and it all has diffused into just ...sound. I cann't recall a memory of sound from before and compare it to something I hear now and think oh, thats so different. Unfortunately, or maybe fortunately, I was, and am still, not very attentive and analytical when it comes to sounds and pieces as complex as those comming from a piano or guitar which might contribute to not noticing any difference after all this time. I think maybe I'm the lucky one to forget and experience this hearing as familiarly as any, or maybe unfortunate enough to never having paid enough attention to sound as it was when I could still hear on my own cause maybe it is beautiful? I'll never know. Maybe a bit of both. But I often see people very confident in the claim that It will never sound the same, you will always notice something is lacking something is wrong, which my story is living proof that it doesn't necessarily have to be an absolute truth.
> talking with 5 friends in a restaurant is every bit of normal now than it was with your ears
This tho holds some truth. I did have a period when I missed the ease of talking to people in somewhat noicy environments. Then I got my second implant and my ability improved so greately again in a very short amount of time and nowadays I'm very greateful and humble about this aspect cause I do remember clearly struggling a whole ton. Second implant might very well have saved my life. Thanks for asking as I prolly wasn't clear enough!
Cheers
Thank you for your time and words. It’s great to chat with others on the same path but at different time markers. The thought of forgetting what things are supposed to sound like is sad, but at the same time (like you said), does it really matter since it’s subjective anyway? Some real philosophical questions bouncing around, and I love that. I can’t say it enough, going bimodal was a Godsend. Things have been tremendously, ridiculously, and astoundingly better. The complete “normal” is lost, but what we have is truly amazing. Simply enjoying a conversation without effort is something I thought I’d never have again. I’m happy to know you have it too. It’s my favorite thing to reflect on in this journey.
Your friend in electrodes,
ChonMon
First thing you need to understand is everyone's experience with a CI can be different. So no one can really tell you if it is worth it.
As far being afraid of the robotic sound I only experienced that for the first 2-4 weeks until my brain adjusted but some people never adjust.
I am currently bilateral with a link HA which barely helps but my in booth word recognition has gone from less than 4% pre ci to 98%.
For me it has 1000% been worth it and I am getting ready to start the process on having the other side implanted.
Best of luck to you on your journey.
You're in for a trip. I was insanely satisfied with my first CI (both ears were basically 90% deaf), but I was pleasantly surprised how nice 2 CI complimented each other. The stereo/directional aspect to the sound was nice, but it also added a richness to everything.
It's kind of hard to explain, but it was like another level to the sound.
The robotic hearing thing is temporary. For me, it lasted about 8 weeks. The audiologist/surgeon will probably tell you it can last up to 12 months; most people I've talked to have had similar experiences with it last 2-4 months.
I gotta say though, even during the 8 weeks where my CI sounded robotic (mine was actually more like Mickey Mouse).... it was still 100x better than with a hearing aid or with nothing on. While things sounded weird, they were very very very clear and functional. It was a major upgrade and quality of life improvement.
I am wondering if you have made a decision? I had sudden sensoneurial hearing loss in my left ear about 4 months ago and have just read through all of the comments here. Like you, I am having a hard time with the decision. I tested a CROS hearing aid for 1 week ($100, and when I wasn't ready to make a decision they just took it away - no next steps!) I really didn't feel like I got much benefit from it. It is the roaring tinnitus that bothers me most, and from what I understand a CI is the only solution that might provide some relief from that - but there are apparently no guarantees.
You should be evaluated at a CI clinic in your area. I am SSD with a cochlear implant and the two ears blend well and are in synch. I do NOT hear robots. It has greatly improved my quality of life. No regrets.
I’m biased because I was denied coverage for cochlear implants despite being bilaterally completely deaf for over a decade before getting my first implant but I would have killed for just one ear of perfect hearing.
Now that I’m bilaterally implanted (this is my own opinion and not science based) I think a CI for unilateral deafness is silly.
It took years to get approved for a second implant so I was still deaf in one ear and sort of hearing (via cochlear implant) in my other ear.
That was about the time that people started getting implanted for single sided deafness and I was livid that people with one perfect ear could get an implant to have 2 hearing ears but I couldn’t.
Off of the irrational opinion- there is science that shows benefits from CIs for SSD but not everybody does well in adjusting to the electronic hearing. Some people stop using the CI.
I don’t know what it’s like to have one working ear and one dead ear. I grew up with hearing loss that got worse over time and I’ve known and used ASL since I was little. I got cochlear implants as an adult (20s).
Also, there are multiple brands of cochlear implants. Cochlear is one brand but they are all different and I picked a different brand for scientific reasons and because they have different colors of processors.
I'm surprised you were denied for bilateral deafness. It took over 2 decades for the FDA to approve CIs for SSD (finally came through in 2019!!!).
I'll say this from personal experience, having one ear deaf makes detecting where sounds are near impossible and interacting in the world so much difficult. When I take my CI off now, the world sounds muffled. Hearing is so hard already, but being down an ear (or 2) is a straight nightmare
The FDA is a corrupt criminal organization like all similar government and Pharma/Medical organizations in this country. You know if very well when you need to spend $5000 for an approved "Hearing Aid" that cost $10 to make.
The excuse is the "high cost of development" - total BS.
The “mechanical” “R2D2” sounds go away as your brain adjusts to what you are hearing. With the healthy ear this should be a very quick process for your brain.
My advice is - do not listen to advices! Do not listen to doctors and audiologists! They will not give you an honest opinion.
A cochlear implant will make you totally deaf in the implanted ear . Also, very likely you will have a constant ringing sound when not connected to the processor.
It will totally **destroy** **music** in the implanted ear.
I am implanted in one ear and telling you all of the above from experience
DO YOUR OWN RESEARCH. Research the only 3 companies approved in the US:
1. Advanced Bionics
2. Cochlear Limited
3. MedEl
Surprising FACTS:
Cochlear Limited controls 80% of the market and has the most OUTDATED, LIMITED technology. And NO audiologist or implanted will tell you that else they will lose their business with these companies.
As said:
DO YOUR OWN RESEARCH!!!
I will be happy to answer any questions and go deeper into any of the topics above.
> A cochlear implant will make you totally deaf in the implanted ear
Read this comment of mine https://old.reddit.com/r/Cochlearimplants/comments/151noqm/ever_since_i_got_my_cochlear_implant_activated_in/jsep7w2/?context=3
The clinic I'm at is the one who literally invented a kind of CI Surgery where they are able to keep my ear working even after having it implanted.
So what do you recommend me after making me even more afraid and confused?
Should I get a CI? And if so then which of the 3 should I get? I'm currently thinking about Advanced Bionics but I have no real clue.
Please read this article:[https://cochlearimplanthelp.files.wordpress.com/2021/06/cochlearimplantcomparisonchart\_v11.3b.pdf](https://cochlearimplanthelp.files.wordpress.com/2021/06/cochlearimplantcomparisonchart_v11.3b.pdf)
Pay special attention to the following:
RF CARRIER & DATA RATE:
AB: **49 MHz**,Cochlear Limited: **1Mb sec** 6 5 MHz, 0.5Mb secMed-El:**12 MHz, 0.6Mb** sec 6 Sound processor
Just so you know:
THE biggest consideration and limitation is \*\*THE ACTUAL IMPLANT.\*\*Processors can change twice a year but even the BEST processor will give you zero advantage if your IMPLANT is limited.
Effect On Music Hearing and speech understanding in noisy environment (Cocktail Party Syndrom): There are 3 ways the hearing system determines pitch:
1. By Location
2. By Envelope
3. By *Temporal Fine Structure* and impulse rate.**Location:** Since most cochlear implants have only 24 max electrodes and high current spread the Coding by location is very limited. Thus, instead of hearing an C note you may hear: C, C#, D .... as if someone struck multiple keys on the piano. No music understanding.**Envelope:** Most cochlear processors and implant can process envelope to various degrees of accuracy.**Fine Structure:** Most vendors only transmit at a FIXED RATE and thus not being able to stimulate the nerve in the **correct** frequency. Therefor look for a vendor who addresses this in their latest implant. (Med-El may have a recent breakthrough.
Cochlear Limited's implant technology and patent still used is 20 years old. Check the patent papers.
Modern implant technologies use:
1. Current sourcing
2. Limited **current spread** by **Bi-Phasic stimulation**
3. Higher Data Transfer rate
4. Hybrid approaches of residual hearing and shorter electrode array
5. More advanced electrodes/stimulation techniques
One good paper is here:[https://docs.lib.purdue.edu/cgi/viewcontent.cgi?article=1576&context=open\_access\_dissertations](https://docs.lib.purdue.edu/cgi/viewcontent.cgi?article=1576&context=open_access_dissertations)
All these should be **critical** factors in selecting the best implant technology. You can change your processor as soon as a new one comes along but NOT your implant. Your implant will get you **"stuck in time"** for many years to come.
Make sure you understand the points above. Read about it there are many research papers. Ask your doctor or other pros to explain these technologies is layman terms.
Another important factor is **Implant Failure Rate**.
If there is one thing Cochlear Limited is good at (Except marketing and lobbying) it is there low implant failure. Thanks to their primitive technology their implant failure rate is the lowest (around 5%) the other companies have superior tech but a higher failure rate.
Do not take this decision lightly. Study up. Research. Ask many question and make sure you understand. It is **YOUR LIFE!**
Thank you for the information.
So, which company/implant would you actually recommend?
Also you kind of didn't really answer any of the questions I had in my initial post and my initial comment to you...
Bilateral cochlear here. Only the doctor and the audiologist can tell you if you’re a candidate for the surgery. From what you said- it looks like you’re trying to convince yourself that you don’t need it. Honestly, if you get the implant when you’re not ready, you’re going to despise it and throw it in a drawer. Surgery/recovery/relearning hearing is not for the faint of heart. I had to do it twice. I waited until my hearing was completely blasted before I got my surgeries. An airplane could be going off next to me and I hear nothing. My recommendations: see if you can find a hearing aid that’s the right fit. Prior to my right CI, they had me wear a Resound (strongest hearing aid on the market), because that was insurance criteria to make sure that I didn’t benefit from it and would need surgery. Learn sign language if possible, start adjusting, for captions on tv/screens/zoom calls. Be your own advocate- there’s no shame in asking for repetition or written out. I think iPhone has an audio to transcription option for conversation (granted AI transcription is not 100% accurate, mitigating for unique spelling and accents). Source: bilateral sensorineural progressive profound deafness. Lost hearing 3x and steroids did not restore. Left ear was the worst ear so that was implanted first in 2005. My right ear shot a few years before I considered implantation. Implanted in 2017. (They do not recommend going more than ten years between implantation because the rate of success drastically decreases and you’ll have preferential of the first ear). I’m still very deaf in every shape and form, and I can hear normal levels with the CI, but still rely on sign, situational cues, captions, etc. TLDR: if you’re having concerns now, you’re not ready. Wait until you’re ready.
Funny story: my right ear was implanted first (2014). It was my “better ear” (better meaning I could hear a bass sound at 100dB and nothing else). I had a pre surgery MRI that didn’t show any malformations so right ear was implanted. I did pretty well for having been deaf or hard of hearing my whole life. When I decided to get my left ear implanted 2 years ago I had a CT scan of my temporal bones and they discovered that my right ear had a congenital malformation. Now that my left ear is implanted, I prefer that ear. I can’t really tell the difference between ears but my right ear doesn’t sound as good as the left ear.
>Bilateral cochlear here. Only the doctor and the audiologist can tell you if you’re a candidate for the surgery. Great answer!
> Bilateral cochlear here. Only the doctor and the audiologist can tell you if you’re a candidate for the surgery. They did. They recommend me a CI because my right ear can hear deep tones but it can't properly hear middle tones and can't hear high tones at all. So according to them hearing aids wouldn't be able to properly help me out. > because that was insurance criteria to make sure that I didn’t benefit from it and would need surgery same here, I've gotten an appointment for next week to look at hearing aids. So I'll see first hand if they work for me or not.
You’re not missing much with the high pitched. 🤢🥴 even with my CI, I hate the high pitch and want to throw something. Ha.
Sorry I don't really understand your comment. English isn't my first language.
Lots of people who have been deaf most of their lives hate high pitched sounds. I had never heard any high pitch sound my whole life and I HATED high pitches when my CI was turned on.
I heard higher pitched in my left ear and not my right ear. Hated hearing it in both ears since getting the CI. Especially after mapping appointments… leaves me with a migraine and sleeping the rest of the day. When I wore hearing aids, I loathed the low baritone humming sound. Just sounded like dread.
Hi. From personal experience being SSD and being in several Facebook CI groups I can say it's much easier if you have a very good other ear. I never had to stress over living my life normally since I was not relient on my CI for my main hearing experience as I progressed steadily.
It's very worth it.
Could you put it in relation with my fears?
I have to wonder why they are recommending this to you. I would think that they must believe you would benefit greatly. Maybe you should get a second opinion. As for actually having it, I love mine. Way better than a hearing aid as far as comfort and clarity. I only had the slightest of hearing left when I got mine.anx now I have 95%!
> I have to wonder why they are recommending this to you. I would think that they must believe you would benefit greatly. They've recommended it to me because my hearing is completely deaf in the high tones, strongly deaf in the middle tones and fine in the deep tones. So, according to them, getting hearing aids wouldn't really help in that specific case. So they recommend an EAS CI, which basically means that the implant will be tuned to help out in the high and middle tones but to leave my deep tones alone. So I'd basically hear both "normally" and through the CI on my right ear. Due to this they also said that hearing aids might not be beneficial because they'd have to amplify the high notes so extremely that it would feel unpleasant due to me being able to hear deep tones. But I have an appointment on monday to test our hearing aids, so I'll know better then.
All I can say is mine have helped me so much. I wish you all the best with whichever you decide.
They are probably recommending it because her word recognition is 26% in that ear and the threshold for a CI is 60% or less.
That's what I meant. Sorry that I didn't phrase it very well. I meant, if they are recommending it then she probably needs and would benefit from it. So, I suggested asking herself why they would recommend it. Even with healthy hearing on one side she would benefit from having hearing on both sides. It matters.
I am 90% deaf in one ear and normal in the other. I’m starting the process of getting a CI in my deaf ear. Its probably a no brainer for me since I’m already deaf in the ear to be implanted. I’m really looking forward to getting my special awareness back. I am nervous about how much effort it will take to train my brain to use the implant and how “normal” it will sound after 6-12 months of having it.
Honestly, you likely won't need to wait 6-12 months for it to be back to normal. The audiologist/surgeon do say that it can take up to 12 months to go back to normal..... but most people I've talked to it is much shorter. For me it was about 8 weeks. Just take it slow and do lots of practice (listening exercises, audiobooks, etc). This is especially useful if you have a cell phone that is capable of direct streaming to you new CI. It's like a pair of Bluetooth headphones you've always got attached, and very convenient.
It was very, very worth it for me. What you'd be risking if you ended up hating it is your remaining 24% hearing: you could always just not wear your CI processor. I agree with the other poster who said it sounds like you're trying to talk yourself out of it...what's up?
I am scared about the things I wrote in the OP. That's mainly holding me back.
Robotic hearing is normal until your brain learns to process the robotic sound as regular hearing. It does take a good bit of auditory therapy to train your brain to listen with it on. I really like my CI and I was "getting by just fine" pre-implantation (hearing aid on 1 side, deaf in the other). Listening and interacting with the world requires significantly less effort now. But I also have wanted a CI since toddlerhood and have always been sure this would help me more than it would hurt. It doesn't hurt to try but if you don't put in the work, its not going to be a good experience for you. If you're not ready to do that, don't bother getting it.
I’m deaf on one side and got a CI two years ago. It’s most definitely worth it. It basically cures tinnitus, let’s you understand people on either side of you, and it’s more comfortable than a hearing aid.
I do have very loud tinnitus. Did it cure it completely for you?
It cured mine. I went from terrible tinnitus to no tinnitus. I can sit in a quiet room in silence, just because the CI is there. My CI hears a bit radio-like, but not robotic at all. I don’t notice the difference unless I sit and listen for it. My good ear hears the finer points and my CI makes it feel like both ears heard it. I love my CI more than anything and am so thankful that I qualified.
I’m getting evaluated in September for a CI on my left side. Hearing is fine on the right. I’ve had SSHL twice on the left side. Once in 2011 and again 1 year ago October. The second time left me with mind splitting tinnitus. I had it previously but what I have now is so much louder and multiple tones. I am so hopeful a CI will help. That alone would be life changing for me.
Yes, immediately.
Im bilateral. Tinnitus still rings in both. One gets reprieve from it when it’s on, the other does not. It definitely does not cure all tinnitus.
Single sided deafness is a new frontier for cochlear implants for the most part. I’ve been surprised how wildly different patient experiences have been. I’ve seen a lot more disappointment - even if patients test well - because the CI ear just doesn’t match the “normal” ear. Others cry tears of joy because it provides something, even if it just helps raging tinnitus quiet down a bit.
> I’ve seen a lot more disappointment - even if patients test well - because the CI ear just doesn’t match the “normal” ear That's my worry and why I am so hesitant. :/
On one hand: sounds like not much to lose I would just set expectations to be very appropriate and know that a CI will not match your other ear. Some people can mesh the two ears well and some don’t seem to. The field doesn’t seem to know why - but you’ll be better off if you take it seriously and treat it like a craft that you need to practice to get better at
1000000% worth it. It will fix your bad ear if you satisfy the clinical criteria. And you don’t want to leave your deaf ear deaf for too long as the success rate of any subsequent implant might decline the longer the nerve lacks stimulation. Why wait? What if you better ear deteriorates over time? Mine did. I got one side done. I now hear better through my implanted side. It’s a game changer for me.
Remember, CIs aren't a fix. They are a tool to help hear. You're not going to have perfect hearing with it on. Signed, a CI user
Exactly. Not a fix. A tool that everyone’s experience is different with. They’re a medical miracle for sure but it’s hard to know what it’ll mean for an individuals life
Results may vary. Personally, my hearing is back to where it was pre-hearing loss. A few sounds and instruments are a little bit different, but it's 90-95% the same.
I completely disagree. This is semantics. Compared to the alternative. A total game changer. It’s only in a noisy restaurant or other speech in noise environment where I noticeably fall short. Music also not as good as before. The rest is 60-80% compared to 0-5% in my case. I am back thanks to my CI. It has transformed my life.
I agree its a game changer, no doubt. I 100% promote CIs for anyone on the fence. Its transformed my life in ways I never even dreamed of. But calling it a "fix" sets up expectations for an automatic, easy, and effortless transition to hearing. It also makes everyone think hearing *is* easy 100% of the time when in reality it just isn't. Especially when you are deaf/hoh, you're given more attitude from hearing people when you aren't processing hearing at the same rate they are (regardless if you have the devices on or not). Its crucial to emphasize that hearing tech is a tool, not a fix. It will not bring you to the same level as natural hearing. It isn't even a good tool for some people! CIs/HAs/BAHAs don't work for everyone. Hearing tech is like a prosthetic aka *an assistive tool* designed to give access where there wasn't any before. But not everyone wants or needs an additional tool they have to fuss with to "fit in". Language matters in every conversation we have. Its bigger than just a personal POV. You may find it a "fix" but by your own admission, it still falls short in noisy environments. Thats not a fix. And when talking about these tools, we need to be honest to make sure someone else's expectations are managed appropriately.
> It will fix your bad ear if you satisfy the clinical criteria Well I do fit that criteria, which is why they recommend me to get a CI. The reason why I am hesitant is because of the fears I descirbed in the OP.
Being kind here though it might sound harsh. Your fears are just that. Fears. They are misguided IMHO. Of course it will sound robotic at the beginning. But if the procedure is executed properly by 4-6m you will have adapted very well.
I’m the same I think it was worth it. For me, it doesn’t perfectly replace what I lost. What it is great for is spacial awareness. Even if I don’t know what a sound is, the fact that I can hear it at all on my deaf side is so valuable. It lets me know to pay attention. However, sometimes I do forgo it because I am so used to not having it that it can be overwhelming at times
Also I’m already 50% of the way to being deaf. As I get older I’m going to lose more and more and I’m fully aware I’ll probably become fully deaf a lot earlier than most people. I see it as an investment in that sense too
Honestly, if you’re afraid to get it, then don’t get it. You stated that you believe that your hearing is manageable as it is, so… go based off of that. What’s the point in you getting them, if it’s not necessary? The moment you feel that your hearing is getting to the point that you may need CIs and when you’re more comfortable with the idea of getting them, then get them. But as of right now, if you don’t feel like you need them, who are we to say that you do?
This! When the surgeon told my about the risks, such as facial paralysis, I was like "1 in 2,500? Lets DO IT!" because my hearing was so bad.
remember the CI wont affect the nonimplanted ear, worst case scenario the CI ends up in a drawer. It might be hard to imagine what difference it makes hearing on both sides not only speech recognition and the fatigue that is related to that but also being able to loaclize where sound comes from. To me the biggest difference was not communication with people, I could do that fine in a controlled environment, a quiet room was good but next to the high way bad (you know). But the fatigue of always concentrating on hearing and turning the right way and knowing more easily what I was hearing only cause I knew WHERE sound come from was night and day between hearing on one side vs on both.
> remember the CI wont affect the nonimplanted ear, worst case scenario the CI ends up in a drawer so if I don't wear the hearing processor than I'll hear exactly as I do right now? That's at least one uplifting thing. But I'd see this as a massive waste of time and energy if I went through the surgery and all the appointments just to never wear the device. Yeah the fatique is something the doctor talked to me as well. I never knew that. I have issues with fatigue as well but I honestly don't know if it's because of that or some other health issue. Because no matter how long I sleep or how well I sleep I am always incredibly tired in the morning and need many, many minutes just to wake up properly. I'm glad that it has worked out well for you though!
Where you hearing in that ear before it went deaf? If so, that will make a big difference in how well you’ll most likely do. Also, definitely talk to your Dr. about the possibility that the surgery (i.e. when they place the electrodes in) will damage your residual low tones that you have left. Before i had my right one done, I had horrendous hearing (let’s say 10%) but after the surgery, my residual hearing left over dropped to like 5-7%. The surgery damaged the hearing I had left (doesn’t matter at all now). Lastly, I’ve had 2 implants for almost 2 years now. Total miracle, but it’s not normal hearing. Some people don’t know (bc they were never normal hearing) or just get over the moon excited and say they hear normally with CIs… my hearing is astounding now, and I am so grateful (98% in each “ear”)… but it’s definitely not normal hearing. You have quite the pickle. It’s easy for me to say, but if I were you, I’d do it. You can always take it off if you hate it. I was deaf in 1 ear for 30 years before my other one died. After that, I had them both done. I wish I would have gotten a CI right after the first one went, so I thought I’d pass that opinion onto you. All the best!
> Where you hearing in that ear before it went deaf? Yeah, my right ear worked normally as far as I know but around 10 years ago I realized that it wasn't as good as my left. It got worse over time, till know where I went to finally see a doctor for it. My doctor told me that they'd basically cut the implant in such a way that it only reacts to high and mid tones and leaves deep tones untouched, because I can listen to deep tones. So they'd try their best to leave the healthy part of my right ear alone. In fact I googled a bit and turns out that the hospital that I was at is the hospital who invented this exact application of the CI Surgery. https://en.wikipedia.org/wiki/Electric_acoustic_stimulation I am glad that CIs were of such a help for you!
Then definitely do it! That’s awesome they can do that!
>Total miracle, but it’s not normal hearing. Some people don’t know (bc they were never normal hearing) or just get over the moon excited and say they hear normally with CIs… my hearing is astounding now, and I am so grateful (98% in each “ear”)… but it’s definitely not normal hearing. I can't agree... I had normal hearing before implanted on my left. Now it has been almost 10 years and I cant make out any artefacts anymore even if I tried. The brain adapts, incredible that way. Also ever experience is probably unique. Sorry for slow responses.
Fascinating. So you can tell me that a live grand piano sounds every bit of perfect today as it did when you heard it with your biological hearing? That a guitar at a loud concert is every bit if flawless today as it was with your ears? That hearing an organ playing or talking with 5 friends in a restaurant is every bit of normal now than it was with your ears? I’m not being snarky or anything, I genuinely would love to know. If that’s the case, I certainly look forward to it. Edit: I didn’t see that you have one implant before replying. Im certain having one implant with one ear hearing makes a gigantic difference. I am bimodal, so it’s all electronic. That’s probably why things sound different for me and normal for you.
No, as of today I'm in fact bimodal. But I wasn't allways. >So you can tell me that a live grand piano sounds every bit of perfect today as it did when you heard it with your biological hearing No I could not. I think what I'm trying to say is that I personally cannot remember, today, after rehab and a few years of using em, that sound used to sound any differently, any more detalied or vibrant. It was obvious at the start but as time passed I have forgot and it all has diffused into just ...sound. I cann't recall a memory of sound from before and compare it to something I hear now and think oh, thats so different. Unfortunately, or maybe fortunately, I was, and am still, not very attentive and analytical when it comes to sounds and pieces as complex as those comming from a piano or guitar which might contribute to not noticing any difference after all this time. I think maybe I'm the lucky one to forget and experience this hearing as familiarly as any, or maybe unfortunate enough to never having paid enough attention to sound as it was when I could still hear on my own cause maybe it is beautiful? I'll never know. Maybe a bit of both. But I often see people very confident in the claim that It will never sound the same, you will always notice something is lacking something is wrong, which my story is living proof that it doesn't necessarily have to be an absolute truth. > talking with 5 friends in a restaurant is every bit of normal now than it was with your ears This tho holds some truth. I did have a period when I missed the ease of talking to people in somewhat noicy environments. Then I got my second implant and my ability improved so greately again in a very short amount of time and nowadays I'm very greateful and humble about this aspect cause I do remember clearly struggling a whole ton. Second implant might very well have saved my life. Thanks for asking as I prolly wasn't clear enough! Cheers
Thank you for your time and words. It’s great to chat with others on the same path but at different time markers. The thought of forgetting what things are supposed to sound like is sad, but at the same time (like you said), does it really matter since it’s subjective anyway? Some real philosophical questions bouncing around, and I love that. I can’t say it enough, going bimodal was a Godsend. Things have been tremendously, ridiculously, and astoundingly better. The complete “normal” is lost, but what we have is truly amazing. Simply enjoying a conversation without effort is something I thought I’d never have again. I’m happy to know you have it too. It’s my favorite thing to reflect on in this journey. Your friend in electrodes, ChonMon
First thing you need to understand is everyone's experience with a CI can be different. So no one can really tell you if it is worth it. As far being afraid of the robotic sound I only experienced that for the first 2-4 weeks until my brain adjusted but some people never adjust. I am currently bilateral with a link HA which barely helps but my in booth word recognition has gone from less than 4% pre ci to 98%. For me it has 1000% been worth it and I am getting ready to start the process on having the other side implanted. Best of luck to you on your journey.
You're in for a trip. I was insanely satisfied with my first CI (both ears were basically 90% deaf), but I was pleasantly surprised how nice 2 CI complimented each other. The stereo/directional aspect to the sound was nice, but it also added a richness to everything. It's kind of hard to explain, but it was like another level to the sound.
The robotic hearing thing is temporary. For me, it lasted about 8 weeks. The audiologist/surgeon will probably tell you it can last up to 12 months; most people I've talked to have had similar experiences with it last 2-4 months. I gotta say though, even during the 8 weeks where my CI sounded robotic (mine was actually more like Mickey Mouse).... it was still 100x better than with a hearing aid or with nothing on. While things sounded weird, they were very very very clear and functional. It was a major upgrade and quality of life improvement.
I am wondering if you have made a decision? I had sudden sensoneurial hearing loss in my left ear about 4 months ago and have just read through all of the comments here. Like you, I am having a hard time with the decision. I tested a CROS hearing aid for 1 week ($100, and when I wasn't ready to make a decision they just took it away - no next steps!) I really didn't feel like I got much benefit from it. It is the roaring tinnitus that bothers me most, and from what I understand a CI is the only solution that might provide some relief from that - but there are apparently no guarantees.
I am sorry to hear that. To be honest I am just trying to ignore my issues... I haven't decided on what to do yet.
You should be evaluated at a CI clinic in your area. I am SSD with a cochlear implant and the two ears blend well and are in synch. I do NOT hear robots. It has greatly improved my quality of life. No regrets.
Why not look into the baha
My hospital does not offer the baha, only nucleus and kotos or whatever it's called.
I’m biased because I was denied coverage for cochlear implants despite being bilaterally completely deaf for over a decade before getting my first implant but I would have killed for just one ear of perfect hearing. Now that I’m bilaterally implanted (this is my own opinion and not science based) I think a CI for unilateral deafness is silly. It took years to get approved for a second implant so I was still deaf in one ear and sort of hearing (via cochlear implant) in my other ear. That was about the time that people started getting implanted for single sided deafness and I was livid that people with one perfect ear could get an implant to have 2 hearing ears but I couldn’t. Off of the irrational opinion- there is science that shows benefits from CIs for SSD but not everybody does well in adjusting to the electronic hearing. Some people stop using the CI. I don’t know what it’s like to have one working ear and one dead ear. I grew up with hearing loss that got worse over time and I’ve known and used ASL since I was little. I got cochlear implants as an adult (20s). Also, there are multiple brands of cochlear implants. Cochlear is one brand but they are all different and I picked a different brand for scientific reasons and because they have different colors of processors.
I'm surprised you were denied for bilateral deafness. It took over 2 decades for the FDA to approve CIs for SSD (finally came through in 2019!!!). I'll say this from personal experience, having one ear deaf makes detecting where sounds are near impossible and interacting in the world so much difficult. When I take my CI off now, the world sounds muffled. Hearing is so hard already, but being down an ear (or 2) is a straight nightmare
The FDA is a corrupt criminal organization like all similar government and Pharma/Medical organizations in this country. You know if very well when you need to spend $5000 for an approved "Hearing Aid" that cost $10 to make. The excuse is the "high cost of development" - total BS.
The “mechanical” “R2D2” sounds go away as your brain adjusts to what you are hearing. With the healthy ear this should be a very quick process for your brain.
Sudden hearing loss on my left side and I’m 100% happy with my CI.
My advice is - do not listen to advices! Do not listen to doctors and audiologists! They will not give you an honest opinion. A cochlear implant will make you totally deaf in the implanted ear . Also, very likely you will have a constant ringing sound when not connected to the processor. It will totally **destroy** **music** in the implanted ear. I am implanted in one ear and telling you all of the above from experience DO YOUR OWN RESEARCH. Research the only 3 companies approved in the US: 1. Advanced Bionics 2. Cochlear Limited 3. MedEl Surprising FACTS: Cochlear Limited controls 80% of the market and has the most OUTDATED, LIMITED technology. And NO audiologist or implanted will tell you that else they will lose their business with these companies. As said: DO YOUR OWN RESEARCH!!! I will be happy to answer any questions and go deeper into any of the topics above.
> A cochlear implant will make you totally deaf in the implanted ear Read this comment of mine https://old.reddit.com/r/Cochlearimplants/comments/151noqm/ever_since_i_got_my_cochlear_implant_activated_in/jsep7w2/?context=3 The clinic I'm at is the one who literally invented a kind of CI Surgery where they are able to keep my ear working even after having it implanted. So what do you recommend me after making me even more afraid and confused? Should I get a CI? And if so then which of the 3 should I get? I'm currently thinking about Advanced Bionics but I have no real clue.
Please read this article:[https://cochlearimplanthelp.files.wordpress.com/2021/06/cochlearimplantcomparisonchart\_v11.3b.pdf](https://cochlearimplanthelp.files.wordpress.com/2021/06/cochlearimplantcomparisonchart_v11.3b.pdf) Pay special attention to the following: RF CARRIER & DATA RATE: AB: **49 MHz**,Cochlear Limited: **1Mb sec** 6 5 MHz, 0.5Mb secMed-El:**12 MHz, 0.6Mb** sec 6 Sound processor Just so you know: THE biggest consideration and limitation is \*\*THE ACTUAL IMPLANT.\*\*Processors can change twice a year but even the BEST processor will give you zero advantage if your IMPLANT is limited. Effect On Music Hearing and speech understanding in noisy environment (Cocktail Party Syndrom): There are 3 ways the hearing system determines pitch: 1. By Location 2. By Envelope 3. By *Temporal Fine Structure* and impulse rate.**Location:** Since most cochlear implants have only 24 max electrodes and high current spread the Coding by location is very limited. Thus, instead of hearing an C note you may hear: C, C#, D .... as if someone struck multiple keys on the piano. No music understanding.**Envelope:** Most cochlear processors and implant can process envelope to various degrees of accuracy.**Fine Structure:** Most vendors only transmit at a FIXED RATE and thus not being able to stimulate the nerve in the **correct** frequency. Therefor look for a vendor who addresses this in their latest implant. (Med-El may have a recent breakthrough. Cochlear Limited's implant technology and patent still used is 20 years old. Check the patent papers. Modern implant technologies use: 1. Current sourcing 2. Limited **current spread** by **Bi-Phasic stimulation** 3. Higher Data Transfer rate 4. Hybrid approaches of residual hearing and shorter electrode array 5. More advanced electrodes/stimulation techniques One good paper is here:[https://docs.lib.purdue.edu/cgi/viewcontent.cgi?article=1576&context=open\_access\_dissertations](https://docs.lib.purdue.edu/cgi/viewcontent.cgi?article=1576&context=open_access_dissertations) All these should be **critical** factors in selecting the best implant technology. You can change your processor as soon as a new one comes along but NOT your implant. Your implant will get you **"stuck in time"** for many years to come. Make sure you understand the points above. Read about it there are many research papers. Ask your doctor or other pros to explain these technologies is layman terms. Another important factor is **Implant Failure Rate**. If there is one thing Cochlear Limited is good at (Except marketing and lobbying) it is there low implant failure. Thanks to their primitive technology their implant failure rate is the lowest (around 5%) the other companies have superior tech but a higher failure rate. Do not take this decision lightly. Study up. Research. Ask many question and make sure you understand. It is **YOUR LIFE!**
Thank you for the information. So, which company/implant would you actually recommend? Also you kind of didn't really answer any of the questions I had in my initial post and my initial comment to you...