Hi everyone, I’m looking for advice and insight from anyone experienced with auditory neuropathy, cochlear implants, pediatric hearing loss, or even clinical research.

My 7-month-old son was diagnosed with unilateral auditory neuropathy (right ear is normal, left ear shows profound loss) via ABR at 2 months old. We’re currently being seen at UCLA, where we finally had our first consult with an ENT, Dr. Akira Ishiyama, who is the head of the UCLA cochlear implant program and also performs the surgeries himself.

At that appointment, Dr. Ishiyama suggested a sedated MRI and a repeat ABR in a couple of months to check for presence or development of the auditory nerve. Totally reasonable, and we’re on board with that. However, what really caught me off guard is how strongly the conversation was already being directed toward cochlear implants, despite the fact that we don’t even know if the nerve is present yet—or if my son would benefit from an implant at all.

He also brought in a woman named Wendy, a cochlear implant coordinator, to speak with us at that first appointment. She’s apparently also handling the scheduling for my son’s MRI and ABR, which seems odd given her title. What’s even stranger is that Wendy actually contacted me weeks before we even had our ENT consult, trying to schedule something she called a “cochlear implant fitting.” At the time, we hadn’t even spoken to a doctor about what was going on. When I declined the appointment… she tried calling my husband a week or so later. And he didn’t decline as graciously as I did, he really questioned her intentions. It felt like we were already being pushed into a surgical pipeline before we even understood the diagnosis.

Another thing that concerned me: Dr. Ishiyama mentioned the OTOF gene mutation, which I had researched extensively beforehand. I know that OTOF mutations almost always present bilaterally, but there are rare cases where it presents unilaterally. When I brought this up, he flat-out told me that OTOF mutations “never present unilaterally” and therefore he would not be ordering genetic testing. He seemed very confident and dismissive about this. But from everything I’ve read—including research papers and community forums—this statement just isn’t accurate. I understand that current clinical gene therapy trials at UCLA are only for bilateral cases, but why wouldn’t we want to know if it’s an OTOF mutation anyway, especially since this could inform future treatment options? Wouldn’t it also be good advice to get the testing to know if it was genetic in case my husband and I ever decided to have another child?

To be clear: I’m not anti-cochlear implant. I just want to fully understand my son’s specific diagnosis and options before going down a permanent surgical route. From what I’ve read, cochlear implants don’t always work well for auditory neuropathy patients, depending on the cause and nerve function. It’s also a little concerning to me that insurance covers cochlear implants but not hearing aids, and that this financial dynamic might be influencing recommendations—consciously or unconsciously.

So here are my questions:

Is it normal for cochlear implant coordinators to be involved in MRI/ABR scheduling before the ENT has even seen the patient?

Should I be pushing harder for genetic testing, even if this doctor dismissed it?

Is it reasonable to question whether my child is being rushed into a cochlear implant pathway too early?

Has anyone else experienced a similar pressure from large CI programs?

Are there other centers (or audiologists/geneticists) who take a more comprehensive or individualized approach?

Thank you in advance to anyone who reads this. I’m just trying to advocate for my son in a way that gives him the best possible chance—without skipping important diagnostic steps or getting swept up in a system that may have its own priorities.

Hello everyone!

I have somewhat of a complicated situation. My adult (20 year old) brother has a cochlear implant that he has had since he was one. My parents are the most irresponsible people on the planet and have basically not had insurance for him since he was a young kid, he has not been mapped in probably 10 years.

Long story short, his processor (Freedom something I believe) broke almost a year and a half ago. My parents have changed their story multiple times about what they are doing to get him a new one, and here we are almost 2 years later and it is still broken.

He has like 20% hearing in one ear and can lip read but I feel sick to my stomach that he has not been able to hear for this long.

I am just brainstorming on what I can do to help the situation, I have looked to see if I can put him on my health insurance but he has to be living with me and I need to claim him as a dependent. I have also looked to see if I can purchase him equipment but I am not sure if he also has to have the actual cochlear inside replaced. I am just really not sure what to do.

I am absolutely heartbroken for him and disgusted with my parents for taking this long to get this situation, if it was my kid, I would have sold a kidney at this point.

Any advice or information would be so helpful and appreciated, thank you!

I’m seeking advice from others in Ontario, Canada, on how they’ve successfully navigated insurance (Canada life) to upgrade their cochlear implant processors. It’s been seven years since I received my implant, and my insurance isn’t covering the upgrade, leaving me overdue for a replacement. Any insights or experiences would be greatly appreciated.l

You may have seen my previous post- 37yo male with progressive bilateral sensorineural hearing loss and will soon be getting a unilateral CI. I will continue to use a hearing aid on the other side. I am a NP working in primary care and I do have the Eko Core 500 Digital Stethoscope. I have not used the bluetooth/streaming capability with my hearing aids yet but am under the impression that it is compatible with CI as well.

I am wondering how other HCP (MDs, NPs, RTs, RNs, LPNs etc) are managing their work/caring for patients while having a CI?

Hi everyone! I am 37yo, have had progressive bilateral sensorineural hearing loss for the last 12-13 years. We have reached the point that a unilateral CI is the next step. I have been reading some of the posts on here and it has been very helpful. I am wondering if anyone would mind sharing some things they felt they "wish they woould have been told" or "wish they would have known" prior to surgery. Good or bad?

Also looking for someone(s) to connect with who has a CI (or maybe even someone who is going to be getting one) to ask questions and keep in contact for support. I do have a great husband and his family are supportive. I am just very nervous as I have never had surgery before.

Hi all,

Our 9-year-old daughter had what seemed to be a processor failure over the weekend, with some uncomfortable noise which led her to take the processor off.

We went to see the implant Centre on Monday, who said there was nothing wrong with the processor.

We went back on Tuesday for them to check the mapping, and they ended up ramping the volume right down on that processor, and gave us three programs on it to gradually ramp the volume back up over the next month. Our daughter has other sensory issues which makes it important to be very careful in how we managed these without her rejecting the processor.

Apparently, the Audiologist turned off one of the two return path electrodes as part of the troubleshooting. I was wondering whether I fought in one of those have caused the crackling.

Has anyone ever had any experience of this before? We don’t think there was any shock or trauma that might have impacted the implant, but as an audio engineer myself. It would certainly fit the bill.

This is a Nucleus N8 and CI624 implants, by the way.

In 2014 after a bad sinus infection, I got left with hearing loss and tinnitus in my left ear. Dealt with it, didn't even notice the hearing loss. I habituated to the tinnitus. ENT did not have much advice and the MRI was normal.

In late 2023 I had a bad flu. My tinnitus is an 8 (and reactive in rooms with more than a few people)since then, and my hearing loss was now moderate according to ENT and audiologist. MRI clear again. But the worst was that now sounds were distorted. Can't talk on phone with left ear anymore, etc... That first night it was horrible.... everything sounded like static. Like an old radio trying to get reception. The next day it improved where I could hear if I strained, but sounds were still distorted, so hard to make out words.

Today, I had another hearing test because the past few days I could swear I hear mild tinnitus in my right ear but couldn't tell because the tinnitus in my left ear is so loud. Anyhow, my left ear is now profound and distorted. 6% word recognition only. And my right ear has mild loss now. Why, I have no idea? No hearing loss in my family other than one grandmother in her 70-80's. And she did fine with hearing aids.

The ENT said to go see another ENT to discuss cochlear implant. She said I would be a good candidate. But the audiologist did not test OAE or ABR/eABR so how does she know its not my auditory nerve going bad and not my cochlea hairs?

Anyhow, thanks to anyone who has read this far and I guess my questions are,

- did you have tinnitus, did tinnitus go away after the implant,

and did you hear "staticky or distortion" coupled with hearing loss, and can an implant really provide clarity?

Researching the implants, it seems to be more complex than I thought. My only other option is a cross hearing aid which would take sounds from my left side and put them in my right ear. But she said to look into the implant first.

Thank you

Bit of background about me: early 30s, born deaf in the left ear and hearing in the right ear. Lost most of hearing in the right ear at 2 years old; it’s classified severe-profound.

Have worn hearing aid in right ear since 3 years old; briefly wore hearing aid in left ear around that age but never received sound/benefit from it.

Received Med-El cochlear implant in left ear in 2015, but have not received much benefit from it. I have been experiencing further recurrent hearing loss in the right ear and am in the process of getting an implant for the right ear.

My audiologist has advised me to go with the Cochlear brand for the right ear and not use the left ear since he does not expect further improvement.

Does anyone here use just one cochlear implant and no hearing aid in the other ear? Even though I’ve only used my right ear all my life, it still seems weird to have just one cochlear implant.

Is anyone else with a cochlear implant very forgetful? I'm wondering if it's just me or if others experience this too.

Just wondering if this is a possibility or even feasible? I feel like I'm missing out on a lot of improvements with such an old implant.

Thank you for taking your time to read about my issue!

• I'm wearing a CI on my left side, surgery was mid February, activation was mid March.
• Activation went ok-ish, had just a Morse signal as first impression: a heavily distorted electrode was the first thing i heard.
• Over the span of three weeks, everything went quite normal. My mappings resulted in light steps of raising volumes and sounds began to differentiate.
• During all the time, the initial electrode still was dominant with distortion and droning even after mappings. I told my audiologist about it, she asked for more patience, which i have. Even now, i'm not sure if this is part of 'normal' behavior and learning process or indicating a failure.
• Last Friday, without me changing anything and without any warning, my processor/implant went full volume.
• My cell phone app warned me about wearing the processor on the wrong ear, but i only have one implant.
• While the processor was full volume, an extreme Tinnitus ocurred. It was slowly raising in volume. I put off the processor, but the Tinnitus still raised, up to the point, it went crazy. It was so loud, it was real pain.
• I tried to get rid of it by putting back the processor on. That slightly worked, but as soon as there was no sound processed, the Tinnitus swell to extreme volumes. I never had Tinnitus in such a horrible sound and in such a volume in all my life.
• Since the processor was full volume and putting it on could not prevent the Tinnitus from raising, i finally left the processor off. I could not sleep that night because of that horrible Tinnitus, it didn't went away all the night.
• I never had Tinnitus after surgery and i never experienced it in such an extreme condition all my life.
• The next morning i had a vertigo plus the Tinnitus.
• When putting on the processor again, the volume of the processor suddenly was normal again. Immediately(!) my Tinnitus disappeared and the vertigo got better.
• 10 minutes later, the processor suddenly changed to full volume again without me touching any controls or changing anything. Immediately(!) the Tinnitus was there again.
• I put off the processor until today. My Tinnitus went away, the vertigo was slowly getting better. So i tried again, the processor was ok for an hour, then the volume cranked up again, retriggering the Tinnitus and i put it off.

I have a regular appointment with my audiologist tomorrow and i will seek emergency help in my hospital that covered the surgery.

But i'm reaching out for you to give me some hints:

• Is this extreme behavior part of the learning process for some of us, did anyone of you experience anything like this?
• Is this indicating an implant failure?

I've had a BAHA implant for years now. And I've worn a CPAP mask for even longer. But it's only been recently I've had issues with them.

When I wake up in the mornings, I'll occasionally find fresh scabs around the implant. As if the CPAP mask strap has been aggravating the skin around the implant.

Has anyone had this issue before? If so, how did you solve it?

Hey everyone,

I’m one of the first 3 participants in the early feasibility study for the Envoy Medical Acclaim internal cochlear implant. I've also been asked to continue on into the next phase–the Pivotal Clinical Trial.

I actually just got back from Mayo Clinic–Rochester, MN on Wednesday. I was out there on a scheduled visit for some bug fixes and they added two new listening modes. It's amazing.

I’m posting here with permission, just to be available and answer any questions you might have.

You may have seen my interview on Envoy Medical’s site (scroll down):

https://www.envoymedical.com/acclaim-cochlear-implant

I experienced what researchers have called a rapid adaptation, but that hasn’t been officially announced yet because it’s not typical and they have to be cautious about how outcomes are shared.

I’ve been through a lot with hearing loss, and I know how isolating it can feel. This journey has been intense, humbling, and life-changing, and if hearing about it helps even one person feel a little more hopeful, it’s worth it.

I’ve also launched a personal site to tell my story in more detail, but I’m not here to promote anything. Just here to be real.

Ask me anything and feel free to check out the FAQ on my web site.

—Michael

https://www.echoesofamiracle.com

Disclaimer: I’m a participant in the Acclaim trial, but my words are my own. I don’t speak for or represent Envoy Medical, Mayo Clinic, or the study team.

What settings does everyone use when using the mini mic to watch tv and other things?

What’s the difference also between the source volume and mic volume? 🤔

Hello! I'm due to be implanted in May, with activation on June 4th. The audiology dept scheduled me for 2 followups after the initial activation, one in mid-July and one at the beginning of September.

My issue is that I am due to be out of town in mid-July, so I'm trying to figure out whether it would be super detrimental to move that first followup appointment to either the beginning of July or the end of July. What am I expecting to happen at those follow-ups, and is there a lot of significance to the timing? And if I do change it, would it be better to move it earlier or later?

I am of course also going to reach out to the audiologist's office to discuss, but I wanted to gather any insight so I can go into this conversation with more background knowledge. Thank you!!

Any other implanted folks here have BPPV? (Benign paroxysmal positioning vertigo.)

Mostly asking out of curiosity - I'm single-sided and it developed on my implanted side, where it flares up horribly in the spring and summer, and rarely (if ever?) has effected my deaf ear. Is that the same for y'all?

My doctors have ruled out the CI itself causing issues as there are no signs of degradation, so I'm left unable to prevent it and stuck doing (literally) one sided therapy. It's a bit frustrating and I'm wondering how others are managing.

Hello!! I have my first plane ride ever in may, never been on a plane and now it’s my first time also going with a cochlear. Is there any tips I should know now that I have a cochlear. Maybe tricks if you feel a lot of pressure etc! And even tips for non cochlear related things. Let me know if all!!

Hello, I was born with microtia in one ear (fully deaf) and full hearing in the other ear. I am in my 30s now and have decided that for professional reasons and personal reasons I’d like to investigate fixing my deafness in my microtia side.

Now, I did have an OSIA test and it was kind of surreal experiencing sound from that side. I have a hard time even recollecting how it felt to be honest, but I could hear things in a way I could never hear before.

I have heard of the concept of word recognition before but I was wondering if someone who’s had a similar experience as me and went with a cochlear implant could weigh in on what effect it had in your day to day life?

While I feel like I could always hear well enough, in loud spaces it’s certainly difficult hearing anyone from my microtia side. And often find myself asking my wife and children “what?!” To repeat but often I hear what they say after I say “what”…does that resonate with anyone?

Hey, anybody here that had a Cochlear N22 internal ever done revision surgery to upgrade it to N24?

My N22 is over 30 years old, implanted in 1994. It's showing signs of aging, 2 electrodes are dropping and another is starting to fail. Had to map that electrode different from the others to make it work. Also getting tinnitus whenever my implant is on (sound distortion, lasts anywhere from 3 seconds to 5 minutes). Brand new processor, coil, and batteries with no issues.

Has anybody managed to get an OK to update it to the N24 to fix the issues?

I am an international student studying in the US, my current cochlear implant model is a pair of kanso 2’s. My home country is Australia.

One of my chargers (the white box) today started flashing orange and no longer seems to work. Is my only solution to order a replacement on the cochlear website and have it delivered from Australia?

Hoping not to go down this route as it’ll be quite inconvenient for me until the charger arrives.

Cochlear has submitted an application to the FCC for the Kanso 3.

FCC ID numbers

• WTO-CP1170 - Kanso 3
• WTO-CP1175 - Kanso 3 with (new) Nexa CI support

Both have a short-term confidentiality date of September 27th, 2025. If we assume a similar timeline of the Kanso 2, pre-orders will start around July-August 2025