My younger brother lost virtually all of his hearing (and nearly his life; the attending neurologist later said that my brother was his sickest patient who lived) after contracting bacterial meningitis when he was 2 years old. This was in the mid-90s and I was in middle school at the time.
He received a cochlear implant and extensive speech therapy throughout his early education, but since he had only just begun speaking when he lost his hearing it was an arduous struggle for him. He clearly was more comfortable among the deaf, and ultimately attended high school and college for deaf/blind students rather than integrating into normal schools. His wife is (congenitally) deaf, as are most of his friends, and he hasn’t turned on his cochlear implant in years.
One of his friends is also a childhood cochlear implant recipient, and he has reached the point where you almost can’t tell that he has a hearing problem. I’ve had some interesting conversations with him about the cultural divide, since he is able to bridge it, and in the process gained a greater appreciation for the challenges my brother has faced. At the very least, I can understand why he would choose to turn off his implant despite all the time and money spent to support it in the past.
edit: as an interesting coda, my brother and his wife just welcomed their first child, and she has normal hearing. This has prompted him to look into options for turning his implant back on and restarting speech therapy.
Great read. I'm a cochlear implant recipient. I live in Melbourne and had my operation at the Eye and Ear Hospital where Graeme Clark did his research, which I thought was pretty neat.
For unknown reasons my normal hearing deteriorated rapidly in my late 30s to the point where my right ear became "profoundly deaf". (My left ear only hears up to 1500 Hz or so.) I got the implant in my right ear in late 2015 and it was literally life changing.
With the combination of the implant and the residual low frequency hearing in my left ear, in most situations my hearing is almost normal. I can understand speech fine and appreciate music.
That is amazing, thank you for sharing. Given you had experienced sound before your hearing deteriorated, is it possible to describe the difference in sound with a cochlear implant? I always thought with the limited number of electrodes in an implant, the sound would be "buzzy" (less rich), but the brain is quite malleable and maybe adapts to the new sounds.
Yes, "buzzy" or "tinny" is a good way to describe the sound I have in my implant ear. But I don't usually notice it with my other ear which has almost normal hearing up to 1500 Hz.
Definitely agree that the brain is quite malleable. I think it was an unexpected result at just how malleable the brain is in adult implant recipients.
FWIW I participated in a post-op research study and IIRC was told that more electrodes wouldn't necessarily improve the quality of the sound. I think what's much more important is the algorithms in the over-the-ear processor. (I have the Nucleus 7: https://www.cochlear.com/au/en/home/products-and-accessories...)
> in most situations my hearing is almost normal ... I can appreciate music.
Is this still true when you block your good ear as well?
There's a chance I'll need a cochlear implant at roughly the same age you received yours - I'd be really keen to understand what the noticeable differences are, particularly regarding music.
I just did a music test with & without my cochlear, using Postmodern Jukebox. ;)
Here's the reference song and timestamp: https://www.youtube.com/watch?v=GI1cGPfL-Bw&t=130s Without my implant I can barely hear anything the drummer does for the next 10 seconds, so it must be > 1500 Hz, which is the upper limit of my "good" ear. With my cochlear alone (i.e., plugging my "good" left ear) I can hear all the frequencies, but the song sounds "tinny" and lacks clarity. With both ears I'm not consciously missing much in terms of clarity if I had normal hearing, so the brain does a very good job at creating almost normal sound from my two very imperfect ears.
However, please note that outcomes for cochlear implant recipients vary. I've been told that my result is unusually good given that I scored 90%+ on standard audiology speech tests post-implant.
I have normal hearing in my left ear, but have had two bouts of sudden sensorineural hearing loss in my right ear that left me deaf on that side. I was given a range of options after the initial steroid injections didn't work and, since my bone conduction still works, I've chosen the new Osia bone conducting implant. It looks pretty similar to a full-on cochlear implant, since it has a magnetically attached external processor (no open port!), but the only internal gear is a stud implanted in the mastoid that takes the sound from the processor and sends it over to my good ear. I still won't have stereo hearing, but it does give "true" sound, which is a priority for me since I play several instruments.
Really appreciate you sharing your experience - I have no idea how these work and sound like science fiction! Can you "echolocate" or know where your phone is when it rings with the implant?
One of the most surprising thing I remember is when I was a student, I met a lot of students in the deaf community (I was an exchange student at RIT which has interpreters in classes) and a few of them felt that the Cochlear implant was a threat to their culture. They were worried that it would signify the extinction of deaf culture.
It's similar to the worries of deaf parents having a hearing child and not being able to connect with them and have less shared experiences.
It's very strange to me. People can and do bond and form a sense of community by overcoming struggles together, but that shouldn't mean preserving the struggle. Communities can also evolve and grow and tackle new types of struggles. It doesn't matter if you have a disability, a disease, or some other condition that requires you to overcome challenges most people never have to deal with, it's a risky thing to make those challenges into an identity or to define yourself or your limits on those terms.
I think you simplify the problem: cochlear implants are far from perfect and many users suffer from headaches while their hearing doesn't improve to the point that they can function like any other hearing person (eg typically they will have trouble discerning multiple voices speaking at the same time, hear anything in high background noise situations). So the choice for then is between being a disabled person in the hearing world, or a normal person in the smaller signing world. That's a hard choice, I'm glad I haven't had to make it.
Sources: My linguist partner cooperates with many sign language researchers, so might be biased. But also, an acquaintance (also linguist) decided to not give their congenial deaf daughter a CI for this reason after considerable deliberation (please don't judge).
That's fair, cochlear implants may not be for everyone. I'd think it'd be worth a shot at least, but people should be still be free do decide against it or do whatever works best for them.
Think you meant to say "extinction of deaf culture."
Speaking for my family, my normal-hearing brother connected just fine with our very deaf parents. He learned sign language and what he had to do to communicate well.
Cochlear implants are amazing, but at the same time still quite primitive. I'm sure if the same budget, talent and manpower was devoted to them as for example to the development of AirPods, we could restore close to natural hearing when implanted early enough.
Even hearing aids should be much cheaper and better.
I read in 2008 that a Stanford Professor Stefan Heller aimed to convert stem cells to hair cells in inner ear by 2020 and restore natural hearing. It sounded quite futuristic and unbelievable at the time, I presume the approach did not work. I wish as much innovation happens on the biology side of things as the technology.
There are some very interesting approaches to Cochlea-Implants[0]. In Göttingen (Germany) a research group tries to stimulate the Cochlea via Light. That would allow for a lot better frequenzy bandwith and therefore better hearing quality.
There was recently an interesting movie called "The Sound of Metal" [1] about a drummer who lost his hearing. He tried to live with it and eventually decided to get a cochlear implant. I don't think it was based on a true story, but I had the impression that the filmmakers tried to accurately show what life with a cochlear implant is like.
My Mum was deaf (totally in one ear, hearing aid in the other), but sadly she died in 1992 before these were widespread.
A few years ago my daughter had a play date with another young girl wearing one, and apart from the fact it was visible, you wouldn't have know she was deaf. I wish my Mum had lived long enough to have the option.
On a side note, any news of semi-permanently implanted headphones? On a daily basis, I use both wired and wireless, IEM/monitors/bone conducting and none of these are ergonomically c enough, they all interfere with headwear, clothing and pillows. If my Aftershokz were not band on but clipped into skull slots, that would be a major quality of life improvement.
Inspirational story, and instructive of crucial it is to have people use your product - in this case for two years, before discovering a major design flaw.
He received a cochlear implant and extensive speech therapy throughout his early education, but since he had only just begun speaking when he lost his hearing it was an arduous struggle for him. He clearly was more comfortable among the deaf, and ultimately attended high school and college for deaf/blind students rather than integrating into normal schools. His wife is (congenitally) deaf, as are most of his friends, and he hasn’t turned on his cochlear implant in years.
One of his friends is also a childhood cochlear implant recipient, and he has reached the point where you almost can’t tell that he has a hearing problem. I’ve had some interesting conversations with him about the cultural divide, since he is able to bridge it, and in the process gained a greater appreciation for the challenges my brother has faced. At the very least, I can understand why he would choose to turn off his implant despite all the time and money spent to support it in the past.
edit: as an interesting coda, my brother and his wife just welcomed their first child, and she has normal hearing. This has prompted him to look into options for turning his implant back on and restarting speech therapy.