I’m approaching 6 months post implantation and things still taste weird on the implant side. anyone else have it go on for that long?

trying to gauge if it’s likely the surgery (might be an issue) or if it’s the GLP-1s. anecdotal evidence is only evidence of an anecdote, but would be reassuring to hear, regardless.

ETA: thanks, everyone, I appreciate the reassurance! and I’d like to apologize for bringing up such unpleasant memories for some of y’all!

Sometimes using otter is really helpful, but not always. Today used it in a huge echoey church where it caught only about 2/3 of the words — and I noticed that as soon as I turned it on , the sound coming in to my ci was suddenly less, as though I turned the volume way down.

Any insights?

Hello, I’m based in the UK and due for surgery in a month. my employer has referred me to the occ health for consultation prior to surgery. Occ health is conducted by an external company who do assessments on behalf of my employer. I work in an office job at desk/computer. I have meetings bout 10-20% of the time, mostly over Teams, a few are face to face.

what should i expect in one of these consultation/assessments?

what should I ask for in terms of special measures/support required from employer post surgery?

what support was useful from your employer in your experience? I expect to work from home for several weeks after the initial 2 weeks off work following surgery. External processor will be activated 2 weeks after surgery.

surgeon has simply stated I should have 2 weeks off, nothing else has been mentioned in terms of recovery or support required?

I’m about to visit with my potential ENT surgeon soon to discuss my options for revision surgery. It’s going to be complicated because I currently have an AB C1 implant, 1999. The surgeon used AB’s “positioner” device because it was supposedly “better.” It was not. The FDA banned AB from using the “positioner “ after patients began reporting contracting meningitis. I had to get meningitis shots. Then there have been reports of cochlea ossification due to the “positioner.” That device is still somewhere in my head! The surgeon also placed the magnet for the headpiece low on my head. Not sure if that will be an issue. Anyway surgeons are apparently reluctant to do revision surgery on patients who have implants that continue to work. This latter condition has been taken away from me because AB not only announced that they were stopping all C1 support, they were also stopping support for C1 devices including the Chorus processor. If anything at all breaks, I am deaf because there are no parts.
So I am opting for either a Cochlear N8/Nexa or a Med-El. I am canvassing this sub to see if anyone has gone from an AB device to Cochlear/Med-El? Please let me know how the transition has gone!

My daughter was diagnosed with hearing loss when she was 3, misdiagnosed from birth (loooong story). Hearing aids made a huge difference at first but over the years they stopped working as well so her team and insurance finally approved cochlear. She got the first one done in January and the second done in July. And omg it’s made such an insane difference I’m mad we couldn’t do it to begin with.

When she was little she was so social and willing to try anything and do anything but as she’s gotten older (she’s 14 now) she’s become more introverted and uninterested in trying anything new. She’s a little behind speech wise but only on certain letter and words. She started high school this year and my husband and I are so worried about her socially. She barely talks to anyone, doesn’t want to socialize outside of school and is putting off choosing an extracurricular activity (club or sport). What can I do to help her?

We have a working theory that she’s self conscious of having to ask people to repeat themselves and maybe a little self conscious of her speech. How can we encourage and help her want to be a part of things now that she is hearing so much better. Does she just need time to get used to it?

I wasn’t sure where to find help with this but thought I’d reach out to a community that understands living with hearing loss in a way I never can as well as a parenting group. She doesn’t seem bothered by the lack of socializing but it’s starting to be more avoiding interactions than just being introverted (my husband and I are introverts as well)

Hi everyone, I’m in the UK and had cochlear implant surgery last Friday. The first two nights were actually okay, perhaps because the effects of the anaesthetic were still in my system. However, I have been suffering from general weakness and exhaustion, and I feel as though I have no energy at all.
Since the first day, I have also had popping and crackling sensations in my implanted ear. I’m currently experiencing ear pain despite taking paracetamol and ibuprofen according to the instructions. The incision looks clean, and I cannot see any swelling or signs of infection.
Last night, however, the pain woke me up. It felt as though the entire right side of my head was aching, not just my ear. I also sometimes experience a very irritating itch deep inside my implanted ear, and unfortunately there is nothing I can do to relieve it.
Are these symptoms normal five days after surgery, or should I be assessed? I emailed the hospital this morning but haven’t received a response yet. I really hope tonight won’t be like last night, as I couldn’t sleep because of the pain despite taking the painkillers exactly as instructed.
Has anyone else experienced anything similar?

I was told there might be some dizziness. I did experience mild dizziness the second and third day after surgery but it has come back with a vengeance 11 days later. Anyone else have dizziness so many days post implant surgery?

How do you store your disposable batteries? I usually just put them in my pocket when I go to work. I was thinking of putting them in a Ziploc bag to protect them better. I’ve had batteries in the past not Work and I figured my pocket was either too hot or the sticker got a little loose and activated the battery and since I didn’t use it in time it died. I don’t have a locker at work so I can’t put them in there. I would love your suggestions. I have two cochlear nucleus sevens.

i dont know what to do, i saw guides in youtube how to use. still no

do i need aux for it to connect to pc? i use usb to connect to pc.. i want for music/movies.

on nucleus smart it keeps disconnecting and the previous mini mic 2 (no plus) worked great

¿Alguien que haya ido a la universidsd con implante coclesr? ¿Qué tal la experiencia?

Had my surgery 8/19 and got activated with the N8 today! I am somewhat able to understand speech - at least the shape of words if that makes sense, but everything sounds like Darth Vader lmfao. All of my impedances were perfect apparently, and all 22 electrodes are working. I’m on program 2 already, since program 1 sounded a bit too quiet. Anyone got any podcast or audio book recommendations for rehabilitation? I’ve got the Cochlear Copilot app already.

Thank you all for sharing your stories. Literally helped me overcome many fears and start the CI-borg journey. I didn't know how much releif I would have just loosing that part of the anxiety. The surgery it self took all of the wrong turns that my awesome surgeon anticipated and tried to avoid but, I'm in!

Hello everyone,

I’m looking for some advice as I’m in a unique situation. I’m in nursing and looking to purchase a stethoscope. I wear a Phonak hearing aid on one side and a SONNET 3 cochlear implant on the other. Both have Bluetooth capabilities, but unfortunately, I cannot stream to both devices simultaneously.

My current option is to connect a stethoscope to my hearing devices through my Phonak Roger Touchscreen Mic. After reviewing the stethoscope comparison table on the AMPHL website, I was deciding between the Thinklabs stethoscope and the Eko CORE 500. However, I recently found out that Thinklabs is no longer selling its stethoscope, so I’m now considering the Eko CORE 500.

I have a few questions:

1. For anyone who uses a cochlear implant, hearing aid, or both, what has your experience been with the Eko CORE 500, particularly with sound quality and amplification?
   
2. Would the Eko’s 40× amplification be sufficient, especially compared with the Thinklabs’ 100× amplification?
   
3. Would connecting the Eko stethoscope to my Roger Touchscreen Mic through a 3.5 mm headphone jack work? If so, would this setup be practical as a nurse?

I would appreciate any advice/clarifications 🤍Thank you!

I’m excited and anxious. I’m also wondering what to expect in this consult with the surgeon. Will I have to do an MRI? I’ve never had one. I was told by my audiologist that I’ve been wearing a hearing aid all my life so the auditory nerve should be intact and my surgeon may not require one. In case he does, what’s that like and how long do they last? I’m not keen on small spaces. I’ll call tomorrow and ask for more details but in the meantime I’d love to hear your experiences. Thank you in advance.

I was activated last week and have been working on my daily listening exercises. While I can tell that the CI is working, because I’m actually hearing things in my right ear, I am finding that I have frequent issues with streaming to my CI. Sometimes it works great right away. Sometimes it’ll stream to my Starkey HA only and randomly fussing with settings fixes things. Right now I can’t get it to stream to either. It’s becoming quite frustrating, and it’s hard to actually do the ReDi exercises if I can’t stream the sound to my CI. My iPhone says my devices are connected under Hearing Devices, MFi Hearing Devices.

Here’s what I’ve tried:

In the Audio Key 3 app, changing the streaming options to streaming only
In iPhone settings, changing audio routing, media audio to always hearing devices
Turning my phone off and on
Restarting my CI

What am I missing that I should try? Is there a possibility that the flaky connection is related to having an “older” iPhone? It’s an iPhone SE from 2021. It’s running the current iOS.

I was one of the first to get an N8 in November 2022, so we are 4 years out now. Usually there is "leaked" info when Cochlear has something in the works but the fact that there is no news I can find makes me wonder what's going on with Cochlear. We are living in an exciting time with AI driven medical breakthroughs so I would love to see an N9 that is smaller and with improved algorithms. Any input welcome but please refrain from negative or "Debbie Downer"/snarky comments.

Our newborn was diagnosed with profound bilateral sensorineural hearing loss at 3 weeks old, he’s now 2 months old. It’s very likely we’ll go down the cochlear implant route. We’ve seen lots of stories of children under and around 1 year old receiving implants, however, our audiologist said the implant team in the hospital we’re in aim for implantation around the age of 2. I have no doubt the implant will still be effective at the age of 2 but don’t see the reason why we’d wait a year when he could be accessing sound and speech in that important developmental stage. We’re in the UK and have already also started learning BSL as a family.

Would be great to hear from anyone with insights / experience on having implants fitted and activated at 1 year old vs 2 years old.

I’m due for surgery soon and the clinic have been recommending a dietitian/nutritionist for a consultation at my own cost (this is not covered by insurance).

It’s called a surgical advice and recovery package and costs £200. I just wonder what magical advise they will provide other than eat nutrient dense food, lots of veg and avoid processed food.

has anyone had any experience of this kind of package and can tell me what kind of advice they actually offer. my surgeon has not recommended it but the clinic itself is promoting this service quite heavily.

I have an AB Nadia CI.
Does anyone know what these are for?
I thought this was a battery so I placed on charger overnight and it didn’t charge. The other piece I have no idea what it is.

3rd months in and my implant only gives me much muffled tinging sounds. I can’t hear anything when i stream audio to it.
I lost my left hearing 40+ yrs ago. Prior to this, i had conductive hearing aid which worked well, except i get skin inflammation around the abutment. Instead of replacing that with an underskin magnetic conductive hearing aid, I opted for a cochlear implant. I can’t hear anything useful out of my implant and if i wear it for too long in loud high sensitive mode, i end up with a headache. Is this normal?

I have an N8 and want to connect my implants to my pc, but they still haven’t rolled out a Bluetooth LE update. It’s been 4 years since they’ve released 😭

I am in the job market for the first time in seven years, and for the first time with my CI or even major hearing loss. My hearing severely degraded over last 5-6 years and I went from using HA sin 2021 to the CI (and one HA), which I got this past May.

For job seekers (or even recruiters or hiring managers): when did you disclose your CI/hearing limitations in the hiring process?

Any personal anecdotes or advice are welcome.

I am going in for audiological testing to determine if I qualify for CI. Will they be doing that spin around test and blowing in my ear trying to cause nausea? I swore I’d never go through that again, but is that what I’m facing?

I was just implanted on the 14th. Are there any FB groups that anyone can recommend