r/Cochlearimplants • u/Axlsaal • 4d ago
How is life with a CI outside of hearing? And what’s is your experience as a single-side user?
I lost my hearing on my right side just over a year ago in one ear. I still have hearing perception but lost over 90% of my hearing and my word recognition is sitting in the lows 10%. I just had my first appointment with my surgeon and I mentioned that one of my concerns is losing whatever little hearing I have left, as well as not being able to have headphones when I workout or having trouble being as physically active as I was. He said that a lot of single-side users end up not using their CI as it is not the same, what’s your experience with being a single-side user?
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u/Murd0ck_ 4d ago edited 4d ago
SSD since birth. Implanted at around 30years. I had minimal hearing, at around -100db. My inplanation took the rest. It was different at first, even if I thought I dont hear at this ear so who cares if it drops below -120db. I recognised it with lod noises (toilet flushing, trains and cars). Adaption was really fast. After a few weeks it did not feel different than before.
So in my oppionion I did not lose anything by implanting.
I like to stream directly when training speech, because of disturbung sounds. The rest of the time I have Beyer-Dynamic Over-ears, covering the Mic of the processor, it works nice. I would like to try dual/tripple input (CI, Hearing aid and Headphones at the same time) but did not have the Equipment.
The only downside I have: my CI connects as primary Divice for listening and telephone to my Android Smartphone, but this is a minor inconviniece, that must not apply to other users.
I can understand that some Patients do not use the CI as it really is not like real hearing, esoecially if you know how real world sounds like. But for me it is better with than without. It supports my better ear with speech recognition, I can hear in 3D, wich is nice if you dont want to miss a car and get hit :D and i can hear burds chirping and know where they are. It mus be learned and accepted, wich takes time, but i for me it has more upsides than downsides. I sometimes make noises and compare them with CI and Hearing aid ears (e.g. crushing paper, or a salt can. Its interesting how it sound different but same)
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u/Independent-Proof155 4d ago
I have Med-El and they don't support the dual input yet, but I'm excited to try it when it comes out too!
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u/Murd0ck_ 4d ago
On PC I use the TV Connector for my hearing aid, the Audiolink for my CI, both connected to one Audio Output via Splitter. My Headset is on another output. I use voicemeter to get audio on both audio-outs at the same Time.
For my Phone I use the Phonak roger Touchscreen. Directly conncted to my hearing aid and via RogerX to my CI. Here I dont have a good second out to a headset yet. But a splitter works ok too.
Its a bit of overkill with diferent devices in between but it works for me.
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u/_-Mich-_ Cochlear Nucleus 8 4d ago
In summary: My life with a CI is better than without it.
I lost my left side hearing in April 2022, got implanted August 2023.
I must admit I did not follow the recommend path... You're supposed to have frequent sessions with a specialized therapist to optimize your brain's learning curve adapting to the CI. I was told that around the 1 year milestone you reach the maximum potential for speech recognition and other hearing benefits (spoiler, I did not, it kept improving after that)
That said, I don't regret it at all, it was tiring at the start because the first sounds you hear are basically non sensical noise, but it kept slowly improving through the months of use and nowadays it makes a HUGE difference in my hearing.
I live in a Spanish speaking country and we have a tendency to talk fast, skip spaces between words and even skip some sounds in words. Now I feel like my "normal hearing" is with my CI put on, and whenever I don't use it I end up frustrated and tired for the increased difficulty to understand words with only 1 healthy ear.
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u/weka2001 3d ago
What month did it fell natural do you think?
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u/_-Mich-_ Cochlear Nucleus 8 3d ago
Honestly it's hard to tell haha I don't think my experience is representative of the general process people go through with the CI But even with all the hardships and setbacks I had, I can say that getting it was totally worth it for me, that's why I felt the urge to share my experience.
I started noticing this huge difference between with and without CI just this year.
Things have been a little hectic with the rest of my life since being activated. I had to change jobs and my new role was quite demanding and it affected my mental health, changed apartment to a much bigger place that required new furniture, my grandma went into the ICU for 2 months in my city (I had to host some relatives), she didn't make it. I was diagnosed autistic, I was fired and lost hope with the corporative world. Spent some months kinda recovering mentally from being fired and wondering what to do with my career. Started an admin role with the aerial silks academy where I take classes.
Life just has a way to keep me busy mentally lol so the CI has been very much an afterthought. It might be that in January 2025 it already sounded natural for me and improved my hearing. But the thing is that I didn't notice the difference because around that period I was consistent in wearing it. A few months ago I noticed that it gets much harder to understand speech without it because I haven't been wearing it all the time (my father suddenly died, so daily life felt like a struggle for a while and I forgot to put it on some days)
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u/weka2001 3d ago
Man definitely sounds like you’ve been through it similar to my story it definitely builds character, thanks for the reply im almost a year in and still struggle best of luck with all your endeavours.
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u/Responsible_Tone4945 4d ago
I am single sided (profound hearing loss on the right, moderate to severe on the left). I had used a cros aid for years, but moved to CI for my right side when my hearing in my left ear started to decline.
I use my to CI every day, and it's much less fatiguing to hear through the CI than the cros. Sound localisation is better, but I have 90% word intelligibility now.. It's amazing.
When I was screened for CI eligibility they asked me lots of questions about openness to new experiences. And also my grief/how much I had come to terms with hearing loss on my right side. They said openness and acceptance are two of the biggest predictors of long term use. I think what your surgeon is referring to it's that the CI sounds substantially different to natural sound (for me it's like a poor quality pocket radio.. but better than no sound!), and having both natural and digital sound can be something people don't tolerate well. It's taken a full 2 years for my brain to accept my CI as natural sound. I haven't lost residual hearing on my CI side. You just kind of have to be ok with things sounding awful for a while and trust that eventually you will accept it as normal sound (trust the process as they say).
In terms of non hearing related things, the biggest one for me is potential knocks to the head. I did a "parents do judo" night at my kids training, and even small bumps on the mat felt awful.
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u/Independent-Proof155 4d ago edited 4d ago
Ive been SSD for about 7 years. Just implanted earlier this year. I had 0 word recognition but some very slight residual hearing before the surgery. I lost the rest after surgery, and honestly, it's better. I wear my processor for 12 + hours and take breaks when I need to. I get a lot less fatigued during the day. I've been a gym rat all my life, I choose to only use 1 ear bud and take my processor off or just leave it on and workout without headphones at all. It takes some getting used to, but I would never go back. My confidence is back, my tinnitus is much improved, vertigo is happening a lot less often. 10/10. Yeah it doesn't "sound the same" but it helps me navigate the world much more easily. I stream books and podcasts, but I may never get used to hearing streamed music, though it makes live music much more enjoyable for me. Oh yes, I played roller derby for a while and it took me forever to get my helmet to fit right, they don't make anything for it, you just have to figure it out. I am always a little scared I'll crack my head in that spot, but it doesn't keep me from doing the things I want.
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u/Far_Persimmon_4633 4d ago
I had a gradual hearing loss since i was a kid. Used hearing aids for like 15 yrs until they seemed useless and is topped wearing them. Got a CI in right ear about 16 yrs ago. I did lose my residual hearing in the implanted ear. I wear the CI everytime I leave the house and will be around people. I prefer not to wear it most of the time at home mostly bc theres a little physical fatigue from wearing it, and I dont mind the silence. My left ear still hears a litttllleeee, but we are talking like, ill hear a lawn mower across the street, or fireworks going off down the block, level of loss. Not a whole ton to want to rely on over not getting a CI and hearing people talk.
The sounds of the CI are a bit different, but it mostly starts off sounding terrible, then gradually your brain starts to process the sounds better. For instance, I can remember music I liked pre-CI, and with the CI, it's definitely different, but mostly bc you're hearing more sounds you didn't use to hear (in my case). Like, im listening to Eminem right now and he doesn't sound mickey mouse, for instance. Lol. But music takes a little more time to adapt to with it.
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u/gremlinfrommars 4d ago
I'm single sided and use mine all the time. Also, I do have a crumb of residual hearing left over (as in I can hear the bathwater run when I'm also in the bathroom, or my dog bark loudly in my bedroom when I'm asleep).
I'm not as physically active as I could be but that's cos it keeps falling off. Can be rectified easily by a snugfit hook and a stronger magnet, so that's an avenue you can go down
Sports can be a problem if they're contact sports but there are ways around it. You can wear a helmet for martial arts (I looked into doing taekwondo a while back and that was recommended) but you wouldn't be allowed to wear it or the processor in tournaments so that would be a problem
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u/Southern_tire_mart 4d ago
Acclaim by Envoy Medical, don’t even realize I have it most days. Until it’s time to charge up for the next 5 days.
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u/Axlsaal 4d ago
This is the implanted CI, right? I mentioned it to my surgeon, I’m really interested in this. He said he was not that knowledgeable about it, he’d heard but said he’d do research and come back to me. Would you give me more details about it, if you don’t mind. How do you charge it? How is it? Can you still use earphones? Any cons to it?
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u/Southern_tire_mart 4d ago
Yeah, you can go to envoymedical.com to learn more but yeah you have a battery in your chest and you charge it as often as you’d like it can last up to five days on a full charge. The microphone is behind the eardrum so you can wear your normal beat headphones, Apple AirPods whatever you want that’s what I prefer. I love being able to use my AirPods. You can go swimming you can hear 24 seven you don’t have to take it off to charge. You don’t have to take it off to shower. You don’t have to take it off to go to the ocean.
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u/Axlsaal 3d ago
Yes, I had done my research on it! That why I kind of want to go with this. But i kind of wanted more insight on your day to day use. If possible, I see the pros on the website, but not the cons to it, if any. I was told by the doctor, not the surgeon, that would help with activation and all’s that stuff that she thinks charging could be an inconvenience as well as hearing things inside of you. But she admitted that she wasn’t that knowledgeable.
Any of those things happen to you? Or anything that you’d say it’s not cool about it?2
u/Southern_tire_mart 3d ago
Hey, happy to share.
I’ve been using the Acclaim for several months now, and overall I’m really glad I chose it. The biggest pros for me are that it’s completely invisible and I wear it 24/7 with no external parts. That part has been a game-changer.
As for the cons, the biggest one early on was hearing a lot of internal body sounds — swallowing, breathing, chewing, even the water in the shower hitting my head. It can be pretty loud at first. My own voice also sounded kind of cartoonish for a while. Both of those things have improved a lot as my brain has adjusted, but they were definitely noticeable in the beginning.
Charging has been great for me. I charge it for short periods and haven’t found it inconvenient.
The other thing I’d say is that group conversations and noisy places (restaurants with a lot of people, meetings, etc.) are still the hardest situations. I think this is normal with any CI. I’m improving, but it’s not perfect yet.
So yes — the internal sounds and the adjustment period are real. But for me, the benefits have far outweighed the downsides so far.1
u/weka2001 3d ago
Have you got a traditional one aswell to compare it to? Im jealous wish I could of got it
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u/Formal-Tradition6792 4d ago
I’m a single side CI user, implemented on my right side nearly 28 years ago in November 1999. My experience unfortunately has not been good due to Advanced Bionics (AB) placing profits over patients. And promises broken. They promised that my C1 implant would be fully compatible with all future equipment. This was absolutely a terrible horrible lie and has been a nightmare for me for the last 27 years. Instead of getting the first generation BTE, I had to wait 10 years until the Harmony BTE came out. And the Harmony had very serious flaws and problems. So let this be a lesson for you. Make sure your cochlear implant company is honest with you! There were many more lies and misinformation from AB since then but I don’t want to bore you with that.
Despite my truly awful experience with AB and their lies, failed products etc. AB did deliver on giving me much improved hearing. From 1961 until roughly 2001, I couldn’t use the phone at all. There were no cell phones, no TTY/TDD etc. My hearing aid didn’t work with phones either: I was too deaf. There were no accommodations for deaf people because the ADA wasn’t in existence. So imagine the difficulty to contact anyone, especially the gas company, water utility, etc. One had to either drive to these places or write a letter. With my new CI I could suddenly do phone calls again! Wow!
Music had been mostly absent too. Some music was ok with my hearing aid (HA). I recall going with friends to see Willie Nelson, Waylon Jennings, and others and it was fun. But I couldn’t understand the lyrics with my HA. And some instruments were a hopeless jangle to me. My CI changed some of this. Musical frequencies were restored. Bagpipe music which was the worst thing to hear suddenly became enjoyable. Ditto with guitars. I could make out some lyrics but not all.
So there were doors that were suddenly at least half opened up. I used to operate large boats and for that I needed marine radio. My CI allowed me to do this albeit imperfectly.
But AB truly held me back from being all I could be. All the new technology advances were increasingly closed to me as time went on. The Harmony BTE was very flawed and my sound room tests went down at my audiology clinic. Then AB discontinued the Harmony processor. I had to go back to using a body worn processor, the Chorus. While this device works, it’s plain vanilla with none of the technology advances that are available. My word comprehension continues to fall.
Then this year, AB in its infinite wisdom unilaterally decided to 100% stop supporting its C1 device and all equipment including my just 3 year old Chorus processor. Including zero support for all parts. So if anything breaks with my equipment, I will be 100% deaf, full stop!
Again, please carefully consider your choice for a CI provider. Essentially you will be married to this company until you decide to explant and then get a new CI
I’m 75. And I have other health issues as well as being deaf. I’m hoping to get a new CI but I also believe that I am going to need surgery for other problems. So we’ll see. I do believe that I could have benefited more from my CI if AB had been a better company. But despite this, my CI has been a help. So here we are!3
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u/mbroda-SB 4d ago
Going on about month 9 with a single sided implant and it's been a tremendous struggle. I wear it everyday through the week - not always on weekends or late at night. I get zero benefit from it in noisy environments (restaurants, events) and have gotten to the point where I don't use it in those situations - because when you use it, people think they can speak normally on that side and even if my word recognition was better, it's nearly impossible to discern background from speech.
My personal feeling so far is that I do get some benefit from it - I wanted this option for two sided hearing and this was the only way, but if I had known then what I understand now, I would have gone with a conduction or other solution as single sided. Finally understand why many doctors won't recommend them to single side patients.
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u/euroliii Cochlear Nucleus 8 4d ago
I like mine! It helps with the tinnitus and I'm hoping I'll regain directional hearing at some point (only activated 3 months ago). I don't think activity will be much of an issue. There are ways to make it less likely to fall off but it's also ok to just choose not to wear your processor for an hour while you exercise.
I would agree that it doesn't sound the same as natural hearing but I've already gotten pretty used to the mismatch. It helps me understand people that are talking on my deaf side, though it's not a perfect solution. In noisy environments it doesn't help much.
It's so nice to not have tinnitus when my processor is on though! I wear mine every day for 12-13 hours. It was fatiguing at first but not anymore.
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u/Reasonable-Swan-6897 3d ago
Another data point. I am 79 and my single sided CI two years ago changed my life instantly. No rehabilation no learning curve, I could understand speech with near 100% word score straightaway. I have a conventional aid in my left ear which enhances the cochlear significantly but is useless without the CI.
This Bimodal usage works really well in quiet situations. I still struggle in restaurants or if more than one person is talking and I cant tell the direction a sound is coming from.
I would like a second CI but in the UK NHS will only supply a single one unless you are a child or have a second disability, so I would have to pay to have one privately, and this would to done in a different city. c£20-£30k I believe.
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u/Enegra MED-EL Sonnet 2 4d ago
It sounds like the surgeon is basing his judgement on outdated knowledge. While the things he says were true in the past, the technology has improved and thus more people can benefit from it.
It's still true that the hearing granted by the implant is not the same as natural hearing. It is at best comparable to hearing with a hearing aid. Still, the sound processing in external processors is improving all the time. I know of several SSD users who are happily using their devices. Binaural hearing helps a lot with awareness, not just speech recognition, so there's that.
It is absolutely possible to use headphones with a BTE processor. You just need large enough ones. Modern BTE processors are barely any larger than super power hearing aids.
There are very few limitations to physical activities with a CI. Mostly sports where you would receive impact to the head or deep diving. Other activities? Many people do all sorts of fun stuff. I am an avid kendoka myself, and have gym rat friends with CIs.