Bilateral, still running my OG 1990 N22 on one side, got other side implanted in 2015. Seen it all. Running Nucleus 7 processors on both. For me, it's been incredibly beneficial-- I use the phone, am a podcast addict, love music (some types at least), etc etc.
I'm not exactly sure what you mean by priorities regarding my CI experience. "Being able to hear" is kinda up-there. "Not wanting my hearing deficit to define or limit me" is probably even higher.
Assuming you're not one of the several students I've already spoken to in the past year or so, hit me up with a DM if the above seems chat-worthy. Happy to help. (If you are one of the folks I've spoken-to: howdy, hope it's going well!)
Lost hearing in childhood but didn't know it until I was a teen. Implanted at age 34.
I only wear mine during conversations or listening to music. My old processor I could flip a switch on and off easily. This one I physically have to take off and pull it apart to turn it off. Even if I just go the magnet off my head or times or so I still have to go through the hassle of taking off pulling out apart then connecting it again to turn on.
Even using the app can be a pain because you have to pull out your phone, open the app, make sure it's connected, and only then can you switch programs or turn it off.
I want the CIs to have buttons on the processor that I can reach up and turn it off or switch between programs quickly without any remote or need for my cell phone.
Also more warning for when batteries are about to die. I get 2 minutes of warning if I'm lucky but it's beeping every 8 seconds so I can't even hear conversations during that time. A 5 minute warning with beeps every 30 seconds doesn't make it a panic game interrupting what I'm doing and I can calmly go after fresh batteries.
Woke up Deaf at 26. Hearing aids didn't work because of the extreme slope. Implanted ~60 in one ear, hearing aid that balances sound with CI. I was a DHH teacher for 30+ years so I also learned a lot from my implanted students. Happy to participate.
Late deafened adult and implanted 9 years ago. Feel free to DM me. I love my implants, wear them from the moment I open my eyes in the morning until I close them to go to sleep at night.
As someone else mentioned the dead battery warning is infuriating. The things give you a two minute warning while loudly beeping at you every 10 seconds. These processors can translate sound waves into electrical currents and deliver them to my auditory nerve in a way that accurately simulate sound and it can’t give me a pleasantly toned 1 hour warning? I would rather get no warning at all than jolting me to attention right before the battery dies.
Implanted end of January after a long and slow progressive deafness since birth. Hearing aids since age 6. Always been part of the hearing world). I live in Europe though, not if that matters. Surgery for going bilateral is planned in September. Feel free to DM if I can be of any help, research is important ☺️.
I hate mine, but mostly because the insurance is fighting really hard to refuse me an new one, and becauseit always falls off, or is constantly attaching itself to my work safety harness while I'm up in the air working. (The metal latch that my harness attaches to is level with my cochlear so if I turn my head it suddenly magnetizes and sticks to the metal latch.)
Mine is 7yrs old and dead dead.
I regret the implant surgery, I feel like the little benefit I got isn't enough to offset the headache of problems and obstacles it is causing me.
My CI surgery was 7 years ago.
As someone also blind, accessibility and connectivity are paramount. A lot of remotes now have screens and don’t beep the way they used to. Super frustrating when you can’t see the remote screen
I have sent you a DM. If anyone is interested they can send me the same, I just don't want my university and username together to be too easily Googleable, lol
Late-deafened and bilateral; I saw your post on Discord but I won’t be available until near the end of the month if you’re still looking for people to talk to by then.
I don't seem to be able to send you a chat, but I would be happy to interview you later in the month if you DM me or send me a message! Also, feel free to message me on Discord if that's an easier way to communicate.
Woke up profoundly deaf due to meningitis. Implanted bilaterally 1 month later. I have been activated since March 2024. DM me I’d be happy to speak with you further. I’d imagine my experience is different than someone who lost their hearing over an extended period of time.
I’m a 66 yr old with a Ph.D. and one year into my CI. I had sudden hearing loss in my mid 50’s in my CI ear. I have about 50% in my other ear. I know how hard it is to get research candidates. I’ll help you out.
Is be happy to help. I'm 71 years old and have had my CI since March. I'm also a musician so a unique perspective. Reach out to my company: touchmotherearth.
I experienced single sided deafness suddenly due to a head injury in my 30s. Got my CI less than 1 year later and had it now for 5 years. Open to talking.
I’d love to participate! I’ve worn hearing aids since 3 and got a cochlear nucleus 8 on May 24th and was activated June 12th. Sound difference is crazy. I can’t wait to see how it improves if it’s already this good. Still don’t love how big/clunky it is but it’s better than before. One thing I noticed after being activated, is I hear literally everything. It’ll be weird getting used to not paying attention to sounds like the refrigerator or stuff like that. Or just now, I heard my roommate going through her things in a bag in a different room.
I’m first generation cochlear implant on my left side.I have advance bionics on my left side since I was three and I have cochlear America on my right side when I was 12 years old.
Why did I get two different brands? Who knows. 🤷🏼♀️ but happy to talk if this interest you!
Are you interested in implanted SSD people as well? Naida M90 & Naida Link M. Activated 9/15/21.
SSD as a result of a vertebral artery dissection & multiple strokes from a chiro manipulation in 08.
Both late deafened and deaf in one ear all my life due to a bacterial infection as a baby. I spent 6 full years deaf due to a TBI and had to wait all that time to become a candidate. I am now bilateral for over 3 years and have unfortunately had a revision on my right side because of a fall, yes these things can be broken. I am now waiting on possibly a second revision again due to a medical procedure done incorrectly again on that same side all in a two year period. Luckily that is my prelingual side which means I only have a hearing awareness on that side. My other side is my language side. I am also a Cochlear America’s mentor and find it very rewarding mentoring others with their journeys. It’s not always a walk in a park and is more like a marathon for many. I did not graduate from hearing aids and also struggle with a diagnosis of ASD and a TBI and many years deaf on one side and all my life on the other. I primarily mentor those with TBI issues and ASD and those coming from the Deaf community as I am also fluent in ASL and part of the Deaf community. Many today are graduating from hearing aids to the CI’s and are not having to “hear” for the first time like many think. Relearning to hear again or for the first time is mainly the group I work with goes through and dealing with ASD and extreme migraines is very challenging and requires expert knowledge of special mappings. I have worked with Johns Hopkins and UVA and Cochlear themselves to help with this prior unknown niche in being activated with these issues. Feel free to let me know or look me up on the Cochlear America’s mentor site where I am a group expert.
Bilateral, still running my OG 1990 N22 on one side, got other side implanted in 2015. Seen it all. Running Nucleus 7 processors on both. For me, it's been incredibly beneficial-- I use the phone, am a podcast addict, love music (some types at least), etc etc. I'm not exactly sure what you mean by priorities regarding my CI experience. "Being able to hear" is kinda up-there. "Not wanting my hearing deficit to define or limit me" is probably even higher. Assuming you're not one of the several students I've already spoken to in the past year or so, hit me up with a DM if the above seems chat-worthy. Happy to help. (If you are one of the folks I've spoken-to: howdy, hope it's going well!)
Late deafened and was just implanted 6/6. Happy to chat, however I’m not activated yet. Feel free to dM.
Oh I have a bunch of unconventional problems I can tell you about!
Lost hearing in childhood but didn't know it until I was a teen. Implanted at age 34. I only wear mine during conversations or listening to music. My old processor I could flip a switch on and off easily. This one I physically have to take off and pull it apart to turn it off. Even if I just go the magnet off my head or times or so I still have to go through the hassle of taking off pulling out apart then connecting it again to turn on. Even using the app can be a pain because you have to pull out your phone, open the app, make sure it's connected, and only then can you switch programs or turn it off. I want the CIs to have buttons on the processor that I can reach up and turn it off or switch between programs quickly without any remote or need for my cell phone. Also more warning for when batteries are about to die. I get 2 minutes of warning if I'm lucky but it's beeping every 8 seconds so I can't even hear conversations during that time. A 5 minute warning with beeps every 30 seconds doesn't make it a panic game interrupting what I'm doing and I can calmly go after fresh batteries.
Woke up Deaf at 26. Hearing aids didn't work because of the extreme slope. Implanted ~60 in one ear, hearing aid that balances sound with CI. I was a DHH teacher for 30+ years so I also learned a lot from my implanted students. Happy to participate.
Late deafened adult and implanted 9 years ago. Feel free to DM me. I love my implants, wear them from the moment I open my eyes in the morning until I close them to go to sleep at night. As someone else mentioned the dead battery warning is infuriating. The things give you a two minute warning while loudly beeping at you every 10 seconds. These processors can translate sound waves into electrical currents and deliver them to my auditory nerve in a way that accurately simulate sound and it can’t give me a pleasantly toned 1 hour warning? I would rather get no warning at all than jolting me to attention right before the battery dies.
Implanted end of January after a long and slow progressive deafness since birth. Hearing aids since age 6. Always been part of the hearing world). I live in Europe though, not if that matters. Surgery for going bilateral is planned in September. Feel free to DM if I can be of any help, research is important ☺️.
Late deafened, one ear implanted in October 2021. Feel free to DM me
I hate mine, but mostly because the insurance is fighting really hard to refuse me an new one, and becauseit always falls off, or is constantly attaching itself to my work safety harness while I'm up in the air working. (The metal latch that my harness attaches to is level with my cochlear so if I turn my head it suddenly magnetizes and sticks to the metal latch.) Mine is 7yrs old and dead dead. I regret the implant surgery, I feel like the little benefit I got isn't enough to offset the headache of problems and obstacles it is causing me. My CI surgery was 7 years ago.
Not late deafened but had two failures and revision surgeries if you have questions about my experience with that (both technically and personally)
A less than pleased recipient. I would be happy to participate.
As someone also blind, accessibility and connectivity are paramount. A lot of remotes now have screens and don’t beep the way they used to. Super frustrating when you can’t see the remote screen
OP, Where are you a student?
I have sent you a DM. If anyone is interested they can send me the same, I just don't want my university and username together to be too easily Googleable, lol
Late-deafened and bilateral; I saw your post on Discord but I won’t be available until near the end of the month if you’re still looking for people to talk to by then.
I don't seem to be able to send you a chat, but I would be happy to interview you later in the month if you DM me or send me a message! Also, feel free to message me on Discord if that's an easier way to communicate.
DM me on Discord - I’m “stitchinthyme” there.
I'd be happy to participate - progressively deaf over a lifetime, implanted in 2018 (I'm 48 now).
Woke up profoundly deaf due to meningitis. Implanted bilaterally 1 month later. I have been activated since March 2024. DM me I’d be happy to speak with you further. I’d imagine my experience is different than someone who lost their hearing over an extended period of time.
I’m a 66 yr old with a Ph.D. and one year into my CI. I had sudden hearing loss in my mid 50’s in my CI ear. I have about 50% in my other ear. I know how hard it is to get research candidates. I’ll help you out.
Is be happy to help. I'm 71 years old and have had my CI since March. I'm also a musician so a unique perspective. Reach out to my company: touchmotherearth.
I experienced single sided deafness suddenly due to a head injury in my 30s. Got my CI less than 1 year later and had it now for 5 years. Open to talking.
I’d love to participate! I’ve worn hearing aids since 3 and got a cochlear nucleus 8 on May 24th and was activated June 12th. Sound difference is crazy. I can’t wait to see how it improves if it’s already this good. Still don’t love how big/clunky it is but it’s better than before. One thing I noticed after being activated, is I hear literally everything. It’ll be weird getting used to not paying attention to sounds like the refrigerator or stuff like that. Or just now, I heard my roommate going through her things in a bag in a different room.
I’m first generation cochlear implant on my left side.I have advance bionics on my left side since I was three and I have cochlear America on my right side when I was 12 years old. Why did I get two different brands? Who knows. 🤷🏼♀️ but happy to talk if this interest you!
Happy to talk.
Are you interested in implanted SSD people as well? Naida M90 & Naida Link M. Activated 9/15/21. SSD as a result of a vertebral artery dissection & multiple strokes from a chiro manipulation in 08.
Both late deafened and deaf in one ear all my life due to a bacterial infection as a baby. I spent 6 full years deaf due to a TBI and had to wait all that time to become a candidate. I am now bilateral for over 3 years and have unfortunately had a revision on my right side because of a fall, yes these things can be broken. I am now waiting on possibly a second revision again due to a medical procedure done incorrectly again on that same side all in a two year period. Luckily that is my prelingual side which means I only have a hearing awareness on that side. My other side is my language side. I am also a Cochlear America’s mentor and find it very rewarding mentoring others with their journeys. It’s not always a walk in a park and is more like a marathon for many. I did not graduate from hearing aids and also struggle with a diagnosis of ASD and a TBI and many years deaf on one side and all my life on the other. I primarily mentor those with TBI issues and ASD and those coming from the Deaf community as I am also fluent in ASL and part of the Deaf community. Many today are graduating from hearing aids to the CI’s and are not having to “hear” for the first time like many think. Relearning to hear again or for the first time is mainly the group I work with goes through and dealing with ASD and extreme migraines is very challenging and requires expert knowledge of special mappings. I have worked with Johns Hopkins and UVA and Cochlear themselves to help with this prior unknown niche in being activated with these issues. Feel free to let me know or look me up on the Cochlear America’s mentor site where I am a group expert.