Je suis maman d’une petite fille sourde d’une oreille et malentendante de l’autre. Depuis que nous avons appris sa surdité, j’ai réalisé à quel point j’avais besoin d’échanger avec d’autres parents qui vivent une réalité semblable à la nôtre.

Comme je ne trouvais pas de groupe qui répondait à ce besoin, j’ai décidé d’en créer un : Parents d’enfants sourds ou malentendants - Québec.

L’objectif est simple : avoir un espace bienveillant où l’on peut poser nos questions, partager nos expériences et nos ressources, célébrer nos petites et grandes victoires, mais aussi parler de nos inquiétudes et de nos moments plus difficiles, sans jugement.

Si vous êtes parent d’un enfant sourd ou malentendant, ou si vous connaissez une famille qui pourrait en bénéficier, je vous invite à rejoindre le groupe ou à partager cette publication.

J’espère sincèrement que cette communauté permettra à des parents de se sentir un peu moins seuls dans leur parcours. Parce que parfois, parler avec quelqu’un qui comprend vraiment, ça fait toute la différence.

https://www.facebook.com/share/g/14uLS3LU8Tv/?mibextid=wwXIfr

I’m getting my implant next month and one thing I’ve been thinking about is sleeping on the implant side. Anyone have any tips or experiences?

For those of you who had a constant tinnitus, was the relief from the implant instant , when you turned it on the first time, or did it came gradually as the hearing improvement from the implant happens?

Hi All!

I recently was diagnosed with SNHL in my right ear and unfortunately haven’t recovered so the topic of getting a CI has come up with my ENT. As background I am a healthy 28 year old male.

My dr has discussed the brand options between Med El and Cochlear and has mentioned that Med El specifically regarding the length of if the cochlear and how they are continually improving.

I was hoping to hear some input on how you feel about your CI and the brand choice. Anything will help!

My 1.5 year old son has been implanted for a year now with Med El. We are in the trenches as far as keeping these processors on him. He wears a headband with a pilot cap over top. When he takes them off, he also dismantles them and causes damage to the little parts. My observation is it is the mic portion of the processor that touches his ear that causes him to want to tear them apart. He goes to daycare and takes them apart there.

His wear time is tanking and he is going into a regression on speech after doing so well. Part of me wonders if going from the Sonnet 3 to the Rondo processors would help him not be so aware of them that he wants to take them apart.

I am looking for some advice here to help with my sanity. I fear everyday that a small piece is going to end up in his mouth and am stressed about his regression due to wear time. Has anybody noticed a difference going to a different style processor? Is it possible to somehow get through insurance hoops to get new equipment earlier if it could potentially help?

Am aware this might be a bit niche! I am deaf with a cochlear implant on my left ear and work in agricultural engineering. I deal with a LOT of iron filings day to day and sometimes I notice them on the magnet of my implant.

Just wondering if there's any other cochlear implant users in this sub who may have a similar experience? I do check it regularly and clean it if there are any there.

But are there any concerns I need to think about? I do wear a hat if I'm doing anything to do with the angle grinder, welding, anything where iron can break.

Are there any known concerns with iron filings and the coil magnet? Any health concerns? Anything I could be doing to help protect it?

Thank you!

Hello, I’m posting here because my audiologist recently told me that she strongly recommends I get a cochlear implant for my left ear, as I only have about 4% of my hearing left and my hearing has been rapidly decreasing the past 2 years (lost over 50% since 2024).

I guess I’m just asking for everyone’s experiences. Was it worth it? What was the healing process like? Do you feel it improved your life at all?

I’m 19 years old and terrified of hospitals and the idea of surgery. I can’t even get my blood drawn without freaking out lol. But social interaction in day-to-day life is super difficult with my hearing, especially since I don’t know ASL. So I’m excited for the possibility to be able to hear like a “normal” person. Idk, I’m just not sure if I should get it or not.

Any comments about the process and your experiences would be appreciated :)

Is there anyone here with a cochlear implant who has some electrodes that don’t work or have stopped working? How has it affected your hearing with the implant?

I’m getting my CI activated next week and I’m really nervous. During my CI surgery, a tumor (or part of it) was removed from my cochlea, and because of that, they were only able to get responses from 15 out of 22 electrodes during surgery.

On the other hand, I guess 15 isn’t that bad either. I was worried the outcome would be even worse.

Hey guys,

I've been completely deaf in my left ear since a traumatic injury about 4.5 years ago. Today I had my CI surgery and activation on the same day! I'm using the MED-EL SONNET 3.

Since this sub helped me a lot. I thought it might be interesting to document how my hearing develops over time, especially for others with SSD who are considering a CI

First of all, the surgery was a real breeze for me. I went under general anesthesia around 8:00 AM and woke up around 11:30 with a slight headache and a bandage around my head. I was probably still under the effects of some anesthetic drugs.

Around 3 PM they removed the bandage and I felt fine. My ear felt a bit like a bruise, but it was still mostly numb, probably from the anesthetics.

I'm writing this at around 11 PM. The numbness has worn off, but the pain is still nothing more than a light bruise. No headache either. I did take 1000 mg of paracetamol this evening, because they told me to.

Then the activation. Hearing something from my left ear again after 4.5 years was really special. It felt like such a relief. I remember thinking: 'You see, my ear wasn't completely broken. It just had a connection problem that's now been fixed.' During the initial fitting, I could hear sounds on all channels.

I just tried the first two exercises in the REDI app and scored almost perfectly. I can recognize the rhythm of words and perhaps a tiny bit of the vowels. Since the exercises are multiple choice, that's often enough to select the correct answer. Without those options, I currently understand absolutely nothing of what I'm hearing. If the incorrect answers had the same rhythm, I'd probably get most of them wrong.

I'm looking forward to my progress in the coming months and I'll keep you posted!

​

Hey everyone!

We're a developing an app designed to help parents practice Auditory-Verbal Therapy (AVT) exercises with their children at home

We've recently created a UI prototype on figma and would love to get some feedback from this community, especially from cochlear implant users, parents of children with CIs, and anyone familiar with AVT

We need feedbacks related to:

- Is the interface intuitive and easy to navigate ?

- Does the design feel child-friendly (we're targeting children aged 1-10 and it is an parent assisted app) without being overwhelming?

- What can we change or improve?

We're still in the early stages, so your suggestions would genuinely help us improve the design and make it more useful.

Thank you so much!

I work with a special needs child who wears 2 cochlear implants. I am not sure of the exact system but it is essentially the magnetic piece was some hair clips on it. It does not attach to the ear. Anytime the child is playing (running, jumping, climbing, dress-up, etc.) their cochlears are always falling off. It is to the point where the child appears so frustrated and annoyed that they are just choosing to not wear them entirely. This is causing communication issues and frustration for the child, their family, and their supporting professionals.

I can’t imagine that there are not better systems/accessories/tools out there to help with keeping cochlear implants attached so a child can actually play. Does anyone have any suggestions ? Do they need to see their audiologist to fix this?

23m born profoundly deaf both ears, wear a Nucelus 8 in my left side, I can hear and talk as normal as I've had a CI since I was 1 year old.

Just curious if anybody here knows or is a police officer who uses a CI. Just seeing my options on whether I can do that job.

hi all, I got activated 3 weeks ago and after my last mapping appointment on Friday I was hearing reasonably well.

however a few days after the mapping appointment (ie, Tuesday today), I’ve noticed I’m suddenly hearing less well with no changes to the programme.

I’m actually hearing a lot more beeps and squeaks (similar to the initial activation week) and less speech understanding than I was over the last few days.

im surprised that there’s a sudden change this morning.

is this normal? the only logical explanation is that my brain is now noticing sounds it never did before and therefore I’m getting these “new” sounds.

Hello! I'm currently using a 2I magnet with my nucleus 8, and I'm interested in moving down to a 1I (but keeping the 2I for days when I'm more active or want it on the outside of my hair). Is there a way to get a lighter magnet without going to my audiologist? I didn't see an option to purchase a lighter magnet on the website.

My next appointment is in like 6 months but I'd rather not wait that long.

Hi all

Just wondering what the best 3D printed accessories you have seen for the Cochlear Implant?

Most of what turns up are 3D printed CI for dolls or toys.

I probably need to search further or change the search terms, but I am interested if anyone has seen anything useful.

Couple of things I am looking for:

1 for the N8 the Y type battery charger doesn't travel very well with the batteries connected as the batteries can break. So looking for a case to hold the batter Y charger and additional batteries for secure traveling.

2 sometimes I don't wear my CI when it and about, but would like to have it handy, or if my batteries go flat when I am out and about it would be useful to have a secure case to store them safely rather than floating around in my pocket risking damage.

Look forward to seeing other practical things you might have seen.

Two months ago, my cochlear implant (Nucleus 8 Nexa) was activated after five years of single-sided deafness. I also recently retired after 31 years as a Microsoft software engineer.

Getting used to implant sound has been frustrating at times. I listened to audiobooks through my implant alone, but often struggled to understand them. With headphones and both ears, I felt my brain relied almost entirely on natural hearing.

So, given my software background and newfound free time :), I wrote a small Windows prototype to explore ways to help my brain combine implant sound with natural hearing while relying less on natural hearing alone. I liked how it worked for my own practice, so I turned it into a **free** iPhone/iPad app so others could try it too. I called it **HearLift**, and the mods kindly gave me permission to share it here.

HearLift lets you keep natural hearing support at a lower volume and vary it automatically while you listen, keeping it more at a "hint-level" while you practice making sense of implant sound. It’s more than setting balance: the app fades your natural hearing in and out so your brain cannot solely rely on it. All this is customizable by you.

I’ve discussed the approach with a professor emeritus of speech and hearing sciences at Arizona State University whose research includes cochlear implants and speech perception. He said the idea has been discussed in his circles and was worth studying, which we plan to do in the coming months. That definitely encouraged me. We don’t know whether HearLift actually improves outcomes; that needs further study. For now, I’m using it with the support of my audiologist, who also thought it was a very cool idea.

All feedback and suggestions are welcome!

[HearLift on the App Store](https://apps.apple.com/us/app/hearlift/id6809207168) · [Privacy policy](https://hearlift.app/privacy/)

Does anyone have any N7 disposable battery holders with the white cover they would be willing to part ways with or any spare rechargeable batteries if you have those too?

My daughter is a bilateral recipient who is down to her last 2 working rechargeable batteries and one of them only lasts a few hours so she’s often forced to go without a processor for several hours at a time while it charges back up. We are saving money for an upgrade now and hope to get her in the N8 as soon as possible, but now that her N7 devices are obsolete the manufacturer no longer sells the batteries or any other parts for that matter on their website and the Cochlear Impant Awareness Foundation application process we submitted for batteries stated there’s a 2-3 week backlog with no guarantee they will have what we need. A fellow receipt parent suggested I check with Facebook and Reddit communities before trying to find some on eBay, so here I am….thanking you in advance for any and all help.

Best Regards,

Shahn (Me) and Addison Smith

My son just had his CI surgery 3 days ago he got both sides done, and he tends to sleep on his side, i cannot get him to sleep on his back and he doesn’t understand he needs to.. (he’s three) any advice/ is it okay if he sleeps on his side if his head is on a pillow?

Hello all, our one year-old got activated on Wednesday and I’m a little bit confused about the frequency with which we should be using the dryer. Audiologist told us that the technology was safe to wear in the bathtub or shower, and then she also told us that on average the family she works with dries around once a week, but our daughter likes to take a bath almost every night. Should I be putting it through after every bath?
Literally any other tips or things that you think should seem obvious are welcome here if you’re kind, because I’m having a hard time keeping all of the information in my head and feel pretty clueless

Hello fellow CI-borgs!

I wanted to share my experience with everybody. Long time lurker here, first time poster.

I went deaf in my right ear in June of 2024 after what we believe the be a meningitis infection. I never did the spinal tap to test for certain but a week after my illness, I woke up thinking I had an ear infection. Long story short I went mostly deaf in that ear.

Speech recognition went from 36% down to 12% over the course of 2 years. Initially I decided against the CI because I’m stubborn but was eventually persuaded due to many different factors. I can now confidently say this was the right choice for me, and I’m a little irritated former me was so stubborn.

Surgery happened 9/2 and activation on 9/14. This past month has been quite interesting as I adapt to the new device.

I had my one month follow up today and I wanted to express how excited I am after getting my testing done. Before, when I was mostly deaf in that ear, audiologists appointments were depressing because everything was going the wrong direction. Today was the exact opposite.

Pre op my word recognition was 18% and my sentence test results were 29%

Today my word recognition is up to 54% and my sentence recognition is up to 92%!

I say this not to brag, but to say I am so incredibly grateful for this technology. I think this is one of the best decisions I have ever made. I was weary going into this process but now I’m kicking myself for not doing it sooner.

I’m an open book on CI and my story so if anyone has questions, I’m happy to chat. Goodluck everybody!

Hi all,

So I am a lifelong Cochlear user on my left side, was activated in 2001 at around 1yr 3mths old. I wanted to honestly express how not great my N7 to N8 upgrade is going.

So I was due for an upgrade, and at the time I was still on my parents’ REALLY good insurance which covered it 100%, plus I already had issues with the N7 (my fault, not Cochlear 😂😬), so I decided to go through with the 30 minute call (why don’t they have chat? Or why can’t I do it through a form myself???).

I received it sometime last November, and first impressions were great. I loved that I could sync my programming from the N7 to N8 and have it sound similar enough that it wasn’t hard to get used to, but I could also tell the mics were better.

But that initial impression faded fast, the Bluetooth connection to my iPhone kept breaking so I’d have to turn off and on the processor, not even just my Bluetooth.

Then my coil started to randomly disconnect, physically. I’d still have the magnet attached and the processor on my ear, but no sound and when I looked it would just be detached, and this happens weekly at least.

The upgrades in this processor are also not crazy, a bit of a better mic, some more control over certain environment (which still have to be programmed by an audiologist) and just in general once the new feel felt off I was more disappointed than pleased.

After all these issues kept creeping up, I called cochlear again to see what they could do, and all four people I spoke to said basically the same thing, “have a better way to keep the whole device on your head” and “it has to be your phone that is having issues”

My next audiology visit I brought up the issue and he said that he is having the same issues when contacting them on behalf of a patient.

So long story short, kinda stuck with these for 4 more years and not happy about it.

My questions,

1. I already wear a baseball hat at all times basically to keep the processor in place, even before the upgrade, any ideas to keep the coil in place better? I’ve tried a thin sports hair thing that keeps hair out of your face and just position it, but that made it worse due to the could being pushed down. Mind you the coil is at a length where it does a little turn back and then comes to the magnet, so it’s not too long or short.

2. I’m getting older and sweatier, and live in a very humid environment. I’m going through mic covers like no one’s business. Any third party products that may help with that?

3. Just ANY third party products that may be fun to try for a late 20s guy to make my life easier/more fun with the cochlear?

Thanks all!

TLDR: I wouldn’t recommend upgrading to N8 especially if you have an older implant, bunch of issues.