It might be the condition I have, otosclerosis, where the bones of the middle ear fuse. The surgery, a stapedectomy, involves removing the bones and replacing them with a metallic prosthesis. Unfortunately, in my case, the calcification is also happening in my cochlea which means that at some indeterminate time in the future, I will end up losing all hearing. Not to mention that even with the prosthetic, my hearing isn’t 100% so I have a difficult time understanding speech. There might be some gene therapy that can remedy things, but I think what I may be hoping to see is the ability to grow a new inner and middle ear from stem cells and transplant them into my head, but I suspect that at age 55, I won’t see this happen in time for me.

I had no idea that was possible. If you'd asked me, I would have guessed that it wasn't.

Astonishing. Sorry it's not a permanent fix for you, but it's impressive as hell that they could do anything.

I was recently diagnosed with otosclerosis, have you found a hearing aid that works best for otosclerosis, my Doctor mentioned that most hearing aids don't work well for low frequency loss.

I have moderate to severe hearing loss mostly in the low frequency region from otosclerosis...I use Widex Moment 440s BTE with custom ear moulds. They sound fantastic. My only complaint is that require a necklace pendant to get Bluetooth connectivity but other than that I love them. They're expensive but worth every penny IMO.

Thank you to share about your personal experience. Will a cochlear implant help for your condition?

It will, but with the caveat that hearing with a cochlear implant is (at least at current technology levels), inferior to hearing with an actual cochlea. So there’s a balancing act where they want to continue having me hear with my cochlea as long as possible. The other problem is that with a CI, I have no hearing at all without the receiver which means that I would be completely deaf while swimming, showering, etc. while I have at least some hearing without my hearing aids right now (although I had an ear infection in December which left me completely deaf for a week. It was a bit startling how much people were unwilling to engage in the smallest adaptations for me—I found how to set up live transcriptions on my phone and I remember the cashier at the grocery store being unwilling to use that so I could see what she was saying).

(With the live transcription feature, I was actually able to engage in normal-ish telephone conversations, maybe even a little more effective than I can with using the audio.)

Those torps are pretty cool but they can get dislodged. I got one in college but I think the benefits for me didn't last more than a year or two. I'll try again someday because my nerve hearing is excellent, it's only my conductive that is poor.

Another viable future tech for this might be neural implants similar to Neuralink. Not sure how viable it would be.

They already have those - called cochlear implants (CI user here)

Hello fellow CI user!

Did your sense of taste change after your surgery? My sister is considering a similar procedure and is concerned that everything could start tasting like hot garbage.

No, I had a bit of dizziness for the first day or so, but otherwise there were no side effects. Absolutely no impact on my sense of taste.

>> so excited because future kids won't have to endure the same.

When cochlear implants became routine there was a brief protest by the deaf and hard-of-hearing community. The line between people with a disability and a person who is simply different is a longstanding debate. How and when medicine should intervene is a hot button issue.

I had a relative born with a malformed ear canal. The doctors rushed to get her the surgery needed so that she could hear equally in both ears, before her developing brain started ignoring the "bad" ear. A few years in and her hearing is now better than mine.

The deaf community is incredibly proud. I have a lot of respect for that. But at the same time, I don't understand it. I'm extremely visually impaired, and I've never seen the same "It's not a disability!" sentiment mirrored in the blind community. Does anyone have any insight why this might be?

The Deaf (capital D) community has its own special language. There's a lot of culture that comes out of that. On the other hand, the blind community has the same languages as the rest of us.

Plus in a motor vehicle driver's world, blindness presents a much more serious problem for mobility, which makes 'the blind community' more diffuse. Blind people are, unfortunately, often relatively socially isolated.

I do suppose that makes a lot of sense. I imagine it's twofold, too: having your own language probably instills a sense of community, which is heightened by the isolation one feels from being so disconnected from so many other communities (including society at large)

Probably because in humans sight is the primary sense and hearing secondary. Deaf people face a lot of challenges, but not nearly as many as blind people (amd I say this as someone with -10 prescriptions, which is close to legal blindness without my glasses)

I think some of this is just a matter of adapting to the bodies we have (we've never had great vision), but my sister and I, who are slowly losing our sight, both agree that we'd rather go blind than go deaf.

For us, it's about the ease with which oral communication connects to others, and a deep love of music. Both of us have an easier time recognizing voices than faces, and this was true even when we were younger and our vision was mostly normal.

This isn't to say one bodily sense or one way of engaging with the world is objectively 'better' than another. I don't think that's true. I'm sure there are many people for whom their vision (or some other sense or mode of engaging with the world) is much more dear to them for their hearing, and that's not wrong, either.

> I say this as someone with -10 prescriptions, which is close to legal blindness without my glasses

Given that much of the point of the designation 'legally blind' is that the impairment is uncorrectable, this is a pretty unfortunate phrase imo, common as it is. (I have about the same level of myopia, fwiw.)

> Given that much of the point of the designation 'legally blind' is that the impairment is uncorrectable, this is a pretty unfortunate phrase imo, common as it is

Why is this unfortunate? The designation also very much refers to the severity of the impairment, not just whether it's correctable. Perhaps this depends on the country?

Because the experience of someone whose impaired vision is fully corrected gives little to no special insight into what it is like to be blind.

(If you spend years where the best vision you get is worse than, 20/200 or whatever, because you don't actually have access to adequate correction, that is actually relevant to discussions of blindness even if your vision is in principle correctable, sure.)

Blind people have to adapt their lives in ways that are just not reflected in taking off one's glasses for a moment or wearing a blindfold for a bit. And when you're as myopic as a -10, the times when you go without correction are typically momentary because not having correction is not optional for you.

At the same time, the anxiety (terror, even) of suddenly trying to navigate the world sightlessly, whether because you're a visually impaired person whose glasses have been lost or crushed or because you're a signted person wearing a blindfold for a day as an exercise, isn't really representative of everyday blind life, either.

'Legally blind without my glasses' is a phrase that at best invites inapt comparisons, and in other cases falsely suggests the authority of highly relevant firsthand experience.

It's not the biggest deal in the world. I wouldn't say it's offensive. But it's just not a very clueful thing to say when talking about blindness or talking to blind people.

I misunderstood you - you were referring to GP's specific use of the phrase ("legally blind without my glasses") not just the phrase "legally blind"

As someone (actually) legally blind, I appreciate the reply :)

Yep! 'Legally blind' itself is often a pretty useful phrase, of course. :)

Deaf ASL users have much less need to hear since their language doesn't require it. For that reason I suspect deaf folks generally find hearing less important than blind folks find seeing.

There are blind people like Daniel Kish who use echolocation to replace sight; I get the sense they're more on the difference side of the fence.

> there was a brief protest by the deaf and hard-of-hearing community

As someone hard-of-hearing myself, let me clear up a couple mistakes in this:

1. The Deaf and the hard-of-hearing are not one community. Most HoH people who have sufficient augmented hearing (from CIs, hearing aids, etc) are uninvolved with the Deaf community. (Also, the community is capitalized, like "Deaf".) 2. The protests are still sorta ongoing in the Deaf community. Since most deaf children are born to non-Deaf parents, the parents typically choose treatments to give their infants some hearing (CIs, surgeries, and now genetic treatments), and many of those kids never enter the Deaf community as they grow. Thus, as a culture, the Deaf will slowly age up and die out for lack of replenishment.

I personally think the different/disabled argument mixes two concerns. To the extent that being "different" affords you the same level of dignity as anyone else, and "disabled" doesn't, I'm in agreement. Historically, we have frequently treated deaf/mute/disabled people very poorly until the modern era.

But to the extent that it denies the reality that most people have reasonable hearing, most of the world relies on it, and there exist interventions that can enable hearing, or asserts those interventions are immoral, I'm against it.

And I suspect a lot of this is driven by anxiety of the loss of Deaf culture. Are the limbless criticizing prosthetics? No, because there's not really a separate culture for that.

Brief? Many are still strongly against it, especially doing this very invasive surgery on babies.

It's a fair enough point, it being invasive, but at what point do the benefits outweigh the negatives?

Don't people who loose their hearing generally choose operations to regain it if they can? Who would know better than people who have tried both.

The impact of medical advancements on individuals and families, the hope they bring for future generations...