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My Mom was born with less than half of her hearing in left ear and barely anything at all in right ear. She had surgery as an adult and it slightly improved, es

My Mom was born with less than half of her hearing in left ear and barely anything at all in right ear. She had surgery as an adult and it slightly improved, especially on the right side. Pretty sure this little girl and my Mom don't share the same disability at all but she saw these news today and texted me so excited because future kids won't have to endure the same. Brings tears to my eyes, I'm so grateful for modern medicine and its stupendous advances.

dhosek 2y ago
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.
- jfengel 2y ago
  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.
- throwaway2037 2y ago
  Thank you to share about your personal experience. Will a cochlear implant help for your condition?
  - dhosek 2y ago
    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).
    - dhosek 2y ago
      (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.)
- shirleyquirk 2y ago
  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.
  - dhosek 2y ago
    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.
- Geee 2y ago
  Another viable future tech for this might be neural implants similar to Neuralink. Not sure how viable it would be.
  - SJC_Hacker 2y ago
    They already have those - called cochlear implants (CI user here)
    - mariebks 2y ago
      Hello fellow CI user!
- izend 2y ago
  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.
  - randlet 2y ago
    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.
- tunesmith 2y ago
  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.
sandworm101 2y ago
>> 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.
- squigz 2y ago
  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?
  - adinisom 2y ago
    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.
  - wl 2y ago
    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.
    - squigz 2y ago
      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)
deleted 2y ago
[deleted]
Xeyz0r 2y ago
The impact of medical advancements on individuals and families, the hope they bring for future generations...

dhosek 2y ago

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.

jfengel 2y ago
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.
throwaway2037 2y ago
Thank you to share about your personal experience. Will a cochlear implant help for your condition?
- dhosek 2y ago
  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).
  - dhosek 2y ago
    (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.)
shirleyquirk 2y ago
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.
- dhosek 2y ago
  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.
Geee 2y ago
Another viable future tech for this might be neural implants similar to Neuralink. Not sure how viable it would be.
- SJC_Hacker 2y ago
  They already have those - called cochlear implants (CI user here)
  - mariebks 2y ago
    Hello fellow CI user!
izend 2y ago
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.
- randlet 2y ago
  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.
tunesmith 2y ago
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.

sandworm101 2y ago

>> 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.

squigz 2y ago
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?
- adinisom 2y ago
  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.
- wl 2y ago
  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.
  - squigz 2y ago
    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)

deleted 2y ago

[deleted]

Xeyz0r 2y ago

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