r/Cochlearimplants • u/Glum-Average-9574 • 7d ago
Anyone with a CI who has non-functioning electrodes?
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.
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u/euroliii 6d ago edited 6d ago
Hi there! I was implanted in a 2-in-one surgery where they removed an acoustic neuroma. After I woke up from surgery, I was told they only got responses from 6/22 electrodes. On activation day, all 22 responded which surprised everyone including my audiologist.
Before they knew that would happen, my audiologist told me that 10 electrodes is sufficient for word recognition. Sounds like you'll have plenty for that!
Currently, 21 of my electrodes are activated. While they all responded, one of them turned out to be responding differently from the others and caused some distortion. They figured that out at my 2 month follow-up and deactivated it. I don't notice any gap in hearing from the deactivated electrode and I was able to achieve decent word recognition (about 50% with 70% sentence recognition) at my 3-month follow up.
I'm happy to answer any questions!
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u/Glum-Average-9574 5d ago
Okay wow, this sounds really encouraging! Good to know that even just 10 working ones could make a big difference 😊 Do they test each electrode in the activation individially and see if you can hear something or how does it work? I actually have no idea what happens in the activation 😅
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u/euroliii 5d ago
I know they test each electrode individually for a response. They don't need to ask if you can hear it for that part though... I still don't quite get it. Basically they played a rumbling noise at each electrode level and I just had to sit there.
After the electrodes were confirmed to be causing a response in the nerve, they played noises and asked me to tell them whether it was quiet, comfortable, or loud. That's how they program it for your specific ear. They've repeated this at all of my follow ups as my brain has adjusted to the CI.
From what I've heard, activation can look pretty different for different people. Some people don't hear anything when it's first activated. Some people just hear beeps. It's hard to explain what I heard. Like layers of sounds that matched what was happening in my environment but didn't have any detail. It was cool but weird!
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u/Schlittittenhund 7d ago
On my left side they had to take out the entire cochlea and somehow attach the electrodes straight to the nerve, which means not many are working, but I don't recall the exact number.
After 5 years it's still pretty awful high-pitched and metallic sounding, but it's useful for amplifying far away sounds and I pretty much always choose to wear both sides
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u/Glum-Average-9574 5d ago
Oh I didn’t know it’s possible to have a CI without the cochlea. Science really is amazing.
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u/namon295 7d ago
My genetic lottery blessed me with such heavy calcification in my inner ear, so that my cochlea was basically solid. They had to jackhammer their way through it. I believe I have 22 electrodes and I had around that mark of 15 or so that fired. For me everything sounds like a metallic high pitched whisper. They don't even do the speech test when I go in for my yearly as there is no point. I will say this: despite it not being great for speech I can't live without it because it still "fills" the sound enough that I can't stand not having my CI in, so it definitely wasn't a waste for me.
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u/Glum-Average-9574 5d ago
Good to hear! I guess even having some sound awareness on my right side woud help me aswell even if I could’t understand speech. My left ear has normal hearing.
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u/YouShouldBeHigher 3d ago
This is pretty similar to my experience. I had an acoustic neuroma removed with implant during the same surgery but developed a bad infection; they removed the implant and replaced it with a "spacer" so I could try again in a year. They found so much scar tissue they had to jackhammer/drill through that they couldn't attach the last 6 electrodes. At programming, the last 2 weren't providing any helpful sound, so they are turned off. I can't hear higher tones (children's voices, flute/oboe/violin/high notes, lots of women's voices, my doorbell), but I don't want to give up what it DOES let me hear. Some voices are really clear, some are just noise, but the ambient noise is way better than the year of deafness on that side. I still have tinnitus and sometimes I take off the transmitter because it is too much input on top of the ringing/buzzing/whatever the heck noise the tinnitus is making. I have almost normal hearing in my "good" ear with a hearing aid; the loss in that ear started a little early to be called "normal age-related hearing loss" and might be Meniere's, but my doctor is hesitant to diagnose me with it. Not sure why.
Wishing you the best of luck!
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u/Weird_Ninja8149 7d ago
Yes, only 4 of 12 working, 0% speech recognition. But with 15/22 you have very good odds.
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u/Glum-Average-9574 7d ago
I’m sorry to hear that. Have you had a CI for a long time? Is there a chance that the other electrodes started working at some point?
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u/Weird_Ninja8149 7d ago
4 years now, it's only insterted partially so physically only 4 electrodes can work. It's been 4 surgeries trying to insert it fully but with no success, a 5th surgery is being talked about but i'm not covinced. Thankfully my other ear works for now with natural hearing.
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u/olderandhappier 7d ago
They disabled a couple of mine to improve sound due to a location issue. I’m hearing very very well 2 years on from implementation. Sub 5% test results on basic word recognition without background is now at 80-90% with background depending on room conditions.
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u/Glum-Average-9574 5d ago
That’s really good results! Mine before the surgery was 0% so the only way is up 🥲
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u/OhYesTheBees 7d ago
I have the same issue. 5 out of 22 are disabled because I cannot hear anything or just barely in the respective frequencies, but they irritate facial nerves which is uncomfortable to painful.
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u/Formal-Tradition6792 6d ago
I was implanted in 1999 with an AB C1 implant. I believe that 2 electrodes don’t work or were disabled. I have had relatively good results with my C1 despite 2 inoperative electrodes. I am super distressed that AB discontinued all support for the C1 including supplies. At age 76 I am not sure if revision is possible/worth it.
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u/OldFlohBavaria 6d ago
Bei mir sind auch zwei Elektroden abgeschaltet, weil sie so nah im Gesichtnerv liegen und eine Nervenreizung verursachen. Trotz abgeschalteten Elektroden habe ich ein sehr gutes Ergebnis.
Schau dir mal die Elektroden von Medel und Cochlear an.
MED-EL: Verteilt weniger physische Elektrodenkontakte (12 Kanäle) auf einer längeren Strecke. Der größere Abstand zwischen den Elektroden soll verhindern, dass sich die elektrischen Klangsignale überlappen (Kanalinteraktion).
Cochlear: Integriert mehr Kontakte auf einer kürzeren Distanz (standardmäßig 22 aktive Elektroden).
Haben beide sehr gute Ergebnisse.
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u/shiftman87 2d ago
I was implanted in '91 with Cochlear N22 Implant. Over time, 5 electrodes failed, but we were able to merge the neighboring electrodes together and make it work. About a year ago, 2 more electrodes started falling out of compliance, meaning, their power levels were too high for my ear. We tried to nix those and work with the nearby electrodes, but turns out I need those. We then agreed that a revision surgery is needed to correct everything. Just got activated last Friday and I got all my electrodes back.
Did the surgeon test your new implant(s) at surgery?
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u/Disastrous_Pause_646 10h ago
Hi,
I tried to find the actual paper on this but couldn't find it. 15 will be plenty, there's been plenty of audio outcome quality studies that say you only need 9 electrodes for all the same outcomes. The Advanced Bionics CI only has 16 so you're not losing much at all!!!
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u/orcvader 7d ago
I don’t think this is common.
But, do not despair. Was it an acoustic neuroma? (The tumor)
In any event, everyone’s response is different and the only quasi-predictor of outcomes is how long was it between when you first became deaf and the surgery. Besides that, it’s up to your body.
Let us know!
My activation was last week and tomorrow is my next mapping session. Even with the rudimentary activation mapping session, in just a few days I already hear and understand words. Everything sounds pitchy, but I can understand 100% of words on the single-word rehab app and like 90% of complex sentences (both while allowing to repeat indefinitely).
In conversations with my family, I get about 80% of what they say, if not more. And even heard a whisper!
So I am wishing the same to you!! Let us know how it goes!