I'm sad and missed CI-user members at AD

etalton said:
Interesting...this is exactly why I left alldeaf..it became an argumentative place. One that I could no longer enjoy.
It is always someone bashing someone else..first it was over "CI's are done to quickly" or..there are better ha's out there to try. And now I see that since I left it is stem cell discussion. All choices to improve hearing are great if they work for you. If they don't, that doesn't make them wrong. If I thought stem cell would work for me, then hell yeah I would go for it same for a ha. But for some..CI is the only option.
They have finally found out what took my hearing..it is an autoimmune disease called Cogan syndrome. Since there is ossification as a result, stem cells would not work. With every attack, the ossification gets a bit worse. I am going for my second CI surgery in February and though it won't make me hear any better, it will allow me to hear in stereo.
BTW...I do pretty well in quiet situations...95% comprehension and in noise testing I scored 85%. Of course, their idea of noise and mine are two different things. The real world is a lot louder.
I have missed many of you, so, decided to come by for a visit. Not sure I will stick around after reading this first post. Will read a few more though before making a decision. To those of you that remember me, I send you a fond Merry Christmas and hope the new year brings you peace and contentment.
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Merry Christmas Etalton. I am surprised to see you back at all. Most late deafened people who get CI are gone as soon as they realize they can hear.

We no longer hold much interest for them. But at any rate it is nice to see you today.
 
Bottesini said:
Merry Christmas Etalton. I am surprised to see you back at all. Most late deafened people who get CI are gone as soon as they realize they can hear.

We no longer hold much interest for them. But at any rate it is nice to see you today.
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Hear? Yes, I guess I do okay. But, I am still in between the hearing world and the deaf world. Like those wearing ha's are. I will never hear "normally" again. I can hold my own in a one on one conversation quite well but hate being in crowed, noisy places. In that atmosphere there is just too MUCH sound and I am so tempted to take my processor off just to get so relief (okay..so I have actually done that).
It is a shame so many of us have left. This was a great place to chat and make friends because I found people that had gone through similar things.
 
etalton, I totally agree.

I have stayed out of most of the arguments and I post less nowdays. I still think people should put more effort into HAs before rushing into CI. FDA requires a maximum of 50% sentence speech, yet I see some with over 70% speech somehow qualifying for CI. I wish I had their hearing and heard this good with HAs! Stem cells should easily give me over 70% of speech which they have!

You will notice that people consider me "anti-CI" but I consider them anti stem cells. I honestly think stem cells is way better, I have seen Chloe's amazing stem cell success and she can hear without HAs! They also say stem cells are 20 years away but ive been in contact with stem cell centers and they are successfully treating deafness and they can treat me anytime im ready. I am impressed at your exceptional CI result(someone who was truly anti-CI would not say this) considering you have ossification. Did they have to drill in your cochlea? If yes, wouldn't this also make room for the stem cells?
 
Etalton, merry xmas and glad to see that you are doing well, I had thought about you and wondering if you are OK, hope you contiune so, to happy and healthy new year *clinks* tea cup (it's boxing morning today in UK)
 
overthepond said:
Etalton, merry xmas and glad to see that you are doing well, I had thought about you and wondering if you are OK, hope you contiune so, to happy and healthy new year *clinks* tea cup (it's boxing morning today in UK)
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Charlotte!! you are one of the ones that I have missed the most. How are you doing? *clinks* coffee mug
 
deafdude1 said:
................ Did they have to drill in your cochlea? If yes, wouldn't this also make room for the stem cells?
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WOW! And all this time I thought you knew what you were talking about. Dude you better educate yourself much further before committing to stem cell therapy. I will say the same thing to you that I say to anyone that is considering a CI. Educate yourself. Make sure you understand how it works, what the risks are and set realistic expectations for the outcome and understand what it will take to be sucessful. Also I would not jump on the bandwagon for something that is still emerging even though it is portrayed as promising. Let the guinea pigs be the guinea pigs.
 
etalton said:
Charlotte!! you are one of the ones that I have missed the most. How are you doing? *clinks* coffee mug
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Hey, I am surprised you still remember my name!! LOL... I am doing well thanks, will send you a PM later in the week OK, Have good weekend.
 
I am part of both deaf and hearing world because I have plenty of deaf, hoh and hearing friends.

DD never understand about deaf world as a deaf community because he don't know sign language nor ASL in his own life. He suppose not bias about deaf community. He posted a negative title toward to public poeple how is embarrass of deaf community look stupid because deaf community don't believe in Stem cell nor CI.

Hey guys, What is your opinion about Stem cell to cure for deafness whom don't want to be deaf and hoh anymore? They are not accept being deafness and not want to learn sign language to communicate with deaf, hoh and ASL interpreter. I seem that DD is unsocial with deaf and hoh people through sign language and ASL.
 
I think the point has been made enough times to cease the harrassing, don't you?
 
Seems that one of my posts has been removed from this thread , I guess it is against the rule to put someone in their place. :hmm:
 
It's interesting how the demographics here have changed over time. I get the sense, as Bottesini mentions below, that late deafened who get CIs seem to come here briefly while making their decisions and then not stick around much after. Obviously this forum is made up primarily of those who are not eligible or opt not to get CIs for themselves (or their children), so we get that majority perspective. But I'm also glad we still have a handful with direct experience in getting CIs -- as children and as adults -- as well as those whose children have gotten CIs. Wish some of these who posted so thoughtfully on their experiences were still here sometimes.


Pinky said:
I noticed the CI-user members have no longer go to AllDeaf anymore. I was suspicious why they lost the interesting into AD. :umm: They used to help people whom consider to get CI. ....
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rockdrummer said:
WOW! And all this time I thought you knew what you were talking about. Dude you better educate yourself much further before committing to stem cell therapy. I will say the same thing to you that I say to anyone that is considering a CI. Educate yourself. Make sure you understand how it works, what the risks are and set realistic expectations for the outcome and understand what it will take to be sucessful. Also I would not jump on the bandwagon for something that is still emerging even though it is portrayed as promising. Let the guinea pigs be the guinea pigs.
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:laugh2: I forget how RockDrummer is. He sure has an effed up sense of humor in a good way.
 
Pinky said:
I noticed the CI-user members have no longer go to AllDeaf anymore. I was suspicious why they lost the interesting into AD. :umm: They used to help people whom consider to get CI. I notice that forum of Hearing aids and Cochlear implants get screwed up by one member whom obsessive with a stem cell to cure for deafness. He think all Pro-CI is biased. That is not true! He is biased and negative toward cochlear implant. Other members are not happy with him. He made many threads to get everyone's attention and argmenet all the times. The CI-user members get tired of hear negative about cochlear implants and the dude think Stem Cell is the best cure for deafness and even a hearing loss. That is no evidence yet. The members and I are interesting into Hearing aids & Cochlear implants forum only no stem cell discussion. The stem cell need to be belong to Open topic debate or lifestyle.

I talked with several MOD about situation with one member on PM.
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Well, some of you know that CI does not work for everyone. Several aders do not seem satisfied from my opinion. By the way, stem cell has been posted all over on ad forum this past two days already. :ugh3:
 
I was wondering about Pinky too. She got married and had a baby, I believe, so maybe that's part of it. But yeah, I don't think she was happy here.
 
I reading to comments it is pretty sound! It is pretty sound look likes long times 2009!

she want to leaving it AD
 
Well I have a CI and never plan on leaving as ASL needs to be a big part of my life. I have met terrific people here and have never been put down for getting my CI. I really didn't have a choice like maybe some others did. My CI journey has been difficult to say the least I definitely spend more time in the deaf world then hearing and I appreciate that all of you have accepted me. So now I will say a BIG thank you!!!!
 
Angel1989 said:
Well I have a CI and never plan on leaving as ASL needs to be a big part of my life. I have met terrific people here and have never been put down for getting my CI. I really didn't have a choice like maybe some others did. My CI journey has been difficult to say the least I definitely spend more time in the deaf world then hearing and I appreciate that all of you have accepted me. So now I will say a BIG thank you!!!!
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I haven't posted much on your threads, but I've really appreciated all that you've shared (and felt for you during the hard times). I think it's important for newcomers with similar situations who are interested in CIs to read what you've experienced, both good and bad things. That's why I miss some of these people who've gone off to FB and blogs, too -- they each gave a unique perspective to their journeys. But why do you say you didn't have a choice, Angel -- that seems terrible, I thought you made the decision under your own free will?
 
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