to cure or not to cure?

cdmeggers

cdmeggers

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So mom and I discussed my working to get back on the cochlear implant track again, and she had the nerve to bring up "nerve cell regeneration". She thinks I should wait longer, wait until this treatment is available. I've told her several times in the last few years, I DO NOT WANT TO CURE MY DEAFNESS! "So then what do you call the cochlear implant?" Um, a cochlear implant will not cure my deafness.. Take the processor off, I'm deaf again yay! (I'm basically feeling offended that she would bother to bring up the regeneration subject yet AGAIN).

And besides, would the hair cell regeneration (which is what, regrowing the hair cells in the cochlea, right?) even work for someone who might have ossified cochleas (I have to wait until the surgeon oks the CT scans, waiting for all of my medical records to be sent to the center). I can see it working in a cochlea that is NOT ossified, but what if it's ossified? (if you know of sources that covers this, please do share).


Anyway... I can't be the only deaf person not wanting to do the hair cell regeneration (or similar treatment/cure) if it's ever available. Would any of you guys go for the regeneration, or stick with your hearing aids/cochlear implant/total deafness and proud of it? I'm just curious.
 
When I had my CI surgery, I asked my surgeon about bilateral and he said he would prefer to wait on a second surgery due to advancements in medicine. IF those advancements were not viable in say, 10 years, he would consider the second surgery. So, compromise. Go for CI in one ear and save the other for whatever medical science brings. Best of both. :giggle:
 
In my case the nerve cell regeneration in which they have been saying for a long time may not even work well for me since my cochlea's are small. If I could get a bilateral inplant I would but medical science has to find a way to reach the other cochlea and that may never happen but I am happy that my ear with the hearing aid found a way to work with the other CI ear. I learn that nothing in life is perfect and I learn to celebrate my own individual uniqueness. :wave:
 
I know what you mean. I don't think nerve cell regeneration will be 100% effective for ALL deaf people. Sadly, that would even bring the debate about "hearing people curing the deaf" all over again.

I got one, and really thought I could save my other one just in case, but there was no way. I felt so one sided. I wasn't going to wait until I'm in my 40's or 50's just to see if it works.

Regardless, your mom has no right to decide on what you want to do. It seems that she still hasn't accepted your deafness 100%.

I actually love to turn off my ears once in a while! The world is loud and even hearing people complain that it's too noisy.
 
john57 said:
In my case the nerve cell regeneration in which they have been saying for a long time may not even work well for me since my cochlea's are small. If I could get a bilateral inplant I would but medical science has to find a way to reach the other cochlea and that may never happen but I am happy that my ear with the hearing aid found a way to work with the other CI ear. I learn that nothing in life is perfect and I learn to celebrate my own individual uniqueness. :wave:
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I doubt it would work for me either. They found ossification in my cochlea and assume there is the same, if not more, in the other ear. But, there are advancements being done in CI as well with laser and fiber optics.
 
Good to know I'm not the only one. My mom also thinks it's not right/fair that we can choose to be deaf, while hearing people technically can't (unless they REALLY plug up their ears, but earplugs don't really block out all sounds, so then they'd have to find an absolutely quiet room for total silence).

At least, with the implants, they can work for ossified cochleas, since Med-El and Cochlear both have split-arrays available just for the ossified cochleas. But, will there ever be any chances of hair cell regeneration working for those with ossified cochleas?

My mom is still trying to understand, trying to get me to explain it to her, but I don't think I can. She may have experienced temporary deafness in one ear for a short while, but that's nothing compared to what we have to deal with, and I just don't think she can truly understand my opting for the implant over regeneration. I tell her I don't want to be cured, I don't want to be hearing full-time (as seems to be the aim for the regeneration). Yes, I've had difficulties with being deaf at times, but that's part of my life, I've accepted that. If I can hear better with the implant than I currently can with the hearing aid, great. But forget the "cure", I just don't want it.

I was hearing for only 26 months of my life, deaf for 21 years. I'm used to my deafness, it's part of me. Why get rid of that with the regeneration? Bah. I don't know, mom's are confusing sometimes. I just don't know how to really explain it to my mom so that she can actually UNDERSTAND. I've tried, time and time again and she never gets it.
 
cdmeggers said:
Good to know I'm not the only one. My mom also thinks it's not right/fair that we can choose to be deaf, while hearing people technically can't (unless they REALLY plug up their ears, but earplugs don't really block out all sounds, so then they'd have to find an absolutely quiet room for total silence).

At least, with the implants, they can work for ossified cochleas, since Med-El and Cochlear both have split-arrays available just for the ossified cochleas. But, will there ever be any chances of hair cell regeneration working for those with ossified cochleas?

My mom is still trying to understand, trying to get me to explain it to her, but I don't think I can. She may have experienced temporary deafness in one ear for a short while, but that's nothing compared to what we have to deal with, and I just don't think she can truly understand my opting for the implant over regeneration. I tell her I don't want to be cured, I don't want to be hearing full-time (as seems to be the aim for the regeneration). Yes, I've had difficulties with being deaf at times, but that's part of my life, I've accepted that. If I can hear better with the implant than I currently can with the hearing aid, great. But forget the "cure", I just don't want it.

I was hearing for only 26 months of my life, deaf for 21 years. I'm used to my deafness, it's part of me. Why get rid of that with the regeneration? Bah. I don't know, mom's are confusing sometimes. I just don't know how to really explain it to my mom so that she can actually UNDERSTAND. I've tried, time and time again and she never gets it.
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I had a harder time adjusting. Hearing normally for 49 of my 52 years. Rapid loss during the last three. I accepted the fact that I am not "hearing" and actually have adjusted ok. I get up in the morning and the CI is not the first thing I think of. There have been many times I have walked out the door, gotten in my car and only then realized I wasn't wearing my processor. I enjoy the quiet, knowing the rest of my day will be full of noise. I don't think anyone in my family would understand that either.
That being said, if they offered me a way to have a total cure, I would take it if it brought me back to where I was before. The brain of most "normal" hearing people learns to block out a lot of sounds that can't be blocked out with CI, or at least, have not been by me, yet. If the offer was less than what I once had, I would have to say, no..I will stay with my CI where I can turn the world off if I choose.
 
Even if you got that nerve regeneration thing, it wouldn't make you hearing again. You would still have a lot to get used to. You wouldn't immediately understand every person that talked to you. Even if you could hear as well as everyone else, it would still be a struggle for you.
 
I think that people should be accepted the way they are. We can't all be the same.
 
I chose to have bilateral CIs only because I could no longer benefit from using a hearing aid in my nonimplanted ear. My CI surgeon recommended that I have the second CI surgery done given the fact that I had run out of options as far as my hearing aid is concerned. I'm *very* happy with the decision I've made and if I had to go back and do it all over again, I wouldn't change a thing!
 
When we were looking into the ci for our daughter in 88/89 there was a lot of talk about hair cell regeration then too. I do not think they are any closer 20 years later and cannot begin to describe all that she would have missed if we waited for it at that time.
 
Funny you should mention this because just today I had a news paper about this thrust at me by my mother.

I would never do it. I am proud to be Deaf. I also don't like sound very much. I wear my hearing aids about 4-6 hours a day Monday-Friday and occasionally on weekends. I haven't even looked at them in a week as of today. I am quite happy in my silent world and I don't feel like I am being held back because of it in anyway.

To me Deaf is who I am. It is one of my primary identities and I don't want that taken away from me. I don't want to be "cured' of my culture or of my identity.
 
As a hearie I can only say: it's your ear, it's your health, it's your life and your decision - not your mother's! ;)

It seems that she still hasn't accepted your deafness 100%.
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That's about right!

The world is loud and even hearing people complain that it's too noisy.
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Especially when living in a big city... Ever since I travelled back into this little village lost in France, I have hard times sleeping while on vacation in LA. There's always some kind of noise out on the street. All I want to do is go back home so I can have a peaceful sleep :giggle:

Anyway.... if CI is what you want - whether one sided or both sides - you should go for it! ;) And if you want you can always turn it off when the noise is getting too much!

JamieLynn
 
Same reason for totally implanted ha, I don't want to hear sound constantly without having capable of turning it off.
So cell regeneration *tossed in the trash* no thanks
Plus it probably will be lame like few out of 100 million cilias grow back and only hear disorted weird sound. Too much unpredictable risks and outcome.
 
I wouldn't go for it either..we talked about that in the avt office , and I was asked if I would do that..I said..nope..I don't believe in that so much , not to mention that I love the ability to be in silence when I want to...my mom neither understands that and is pressuring me sometimes..because I wore the HA all the time I was awake , but the cards have changed with CI...

the only thing I would want is to be bilateral..lately , I feel too one sided..which is weird as I was unilateral HA user and I implanted my good ear.
 
my mom seems to think the regeneration would be a magic fix. I kind of figured it'd be too much for a deaf person at first, having to deal with all the sounds hitting at them and having to put up with that with basically no breaks. Makes me glad my dad doesn't try to toss this stuff in my face like my mom does. He's the one that says "it's your ears, do what you want, I'll support you in anyway I can." Mom, she says she'll support whatever decision I make, but she still hints and suggests and bah. I know she WONT be happy if I do have the right ear implanted (it's my "good" ear, and she's all scared the implant won't work and I may be DEAF for life, but I know and understand the risks and I'm willing to take those risks if there is absolutely no way the left ear can be implanted).
 
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