Comments on: C.I.: My Love and Hate Relationship with Cochlear Implant http://www.mishkazena.com/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/ Just another WordPress weblog Sun, 15 Jan 2012 09:35:46 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: huggyangels http://www.mishkazena.com/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/comment-page-1/#comment-6248 huggyangels Thu, 13 Mar 2008 23:12:11 +0000 http://blog.deafread.com/mishkazena/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/#comment-6248 Wow! I am glad I turned down the offer at the hearing aid center several times. I was born hearing but lost hearing while ongoing child abuses. My mom kept trying to find the cure on me TWICE then 3rd time, she tried again, the doctor told her I couldn't have anymore ear operations. I grew up suffering headaches/migraines after wearing hearing aids then I learned that ear mold held air inside that caused infections so I am wearing on and off hearing aids today. I am glad I am deaf! I am glad I am wearing on and off hearing aids, but no fun spending on batteries! Thank you for your share of experiencing CI Whew! SC Wow! I am glad I turned down the offer at the hearing aid center several times. I was born hearing but lost hearing while ongoing child abuses. My mom kept trying to find the cure on me TWICE then 3rd time, she tried again, the doctor told her I couldn’t have anymore ear operations. I grew up suffering headaches/migraines after wearing hearing aids then I learned that ear mold held air inside that caused infections so I am wearing on and off hearing aids today. I am glad I am deaf! I am glad I am wearing on and off hearing aids, but no fun spending on batteries! Thank you for your share of experiencing CI Whew! SC

]]> By: jodi http://www.mishkazena.com/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/comment-page-1/#comment-6247 jodi Sun, 10 Feb 2008 10:10:56 +0000 http://blog.deafread.com/mishkazena/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/#comment-6247 Tory, I don't know how to say all this stuff in English...ironies of life- our experience has been in Italian, but I guess the translation would be something like this...when you are re-tested for your audiometric exam without the ci, compare the results of the test with your prior results of the ear implanted. We decided to implant Jordan's "worse ear" and with that ear before being implanted, he could hear sound at 105 decibels, this remained unaltered after the surgery. If you want to get in touch with me, you can email me at jodi@rallycaps.net Thanks again, Tory...Jodi btw. love that name! Tory,
I don’t know how to say all this stuff in English…ironies of life- our experience has been in Italian, but I guess the translation would be something like this…when you are re-tested for your audiometric exam without the ci, compare the results of the test with your prior results of the ear implanted. We decided to implant Jordan’s “worse ear” and with that ear before being implanted, he could hear sound at 105 decibels, this remained unaltered after the surgery. If you want to get in touch with me, you can email me at jodi@rallycaps.net Thanks again, Tory…Jodi btw. love that name!

]]> By: Tory http://www.mishkazena.com/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/comment-page-1/#comment-6246 Tory Fri, 08 Feb 2008 16:24:37 +0000 http://blog.deafread.com/mishkazena/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/#comment-6246 Jodi, I have N24 but I was told by my surgeon that I will lose my hearing permanently after the surgery. I am confused... i could ask my surgeon and see what he says. This is an interesting information. Ill get back to you once i hear from the dr. Thanks! Jodi,
I have N24 but I was told by my surgeon that I will lose my hearing permanently after the surgery. I am confused… i could ask my surgeon and see what he says. This is an interesting information. Ill get back to you once i hear from the dr.
Thanks!

]]> By: Jodi http://www.mishkazena.com/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/comment-page-1/#comment-6245 Jodi Thu, 07 Feb 2008 21:06:15 +0000 http://blog.deafread.com/mishkazena/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/#comment-6245 Mishka, I'm late checking back here...just wanted to let you know that Jordan did not lose his residual hearing after his ci surgery as evidenced in his audiogram. We were totally expecting him to lose it and it was a major concern for us, but we obviously went ahead with it anyway. Actually, the piece inserted in the cochlea is now swirled in the shape of the cochlea (in the Nucleus 24 and Freedom)so that it is easier for the surgeon to insert the wire with the electrodes in the cochlea without destroying the residual hearing. I have been hearing about a number of successful surgeries lately, the technology and surgeons are improving. We were very fortunate. Jodi Mishka,
I’m late checking back here…just wanted to let you know that Jordan did not lose his residual hearing after his ci surgery as evidenced in his audiogram. We were totally expecting him to lose it and it was a major concern for us, but we obviously went ahead with it anyway. Actually, the piece inserted in the cochlea is now swirled in the shape of the cochlea (in the Nucleus 24 and Freedom)so that it is easier for the surgeon to insert the wire with the electrodes in the cochlea without destroying the residual hearing. I have been hearing about a number of successful surgeries lately, the technology and surgeons are improving. We were very fortunate. Jodi

]]> By: Jean Boutcher http://www.mishkazena.com/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/comment-page-1/#comment-6244 Jean Boutcher Thu, 07 Feb 2008 17:13:12 +0000 http://blog.deafread.com/mishkazena/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/#comment-6244 Tory writes: <blockquote>I had a thought earlier that the surgery procedure probably has improved greatly and when a baby is implanted how would the dr know if the baby has lost balance if the baby has not yet walked or just started to walk?</blockquote> I agree with you. That is one of the reasons I am against aboutthe cochlea implantion in babies and toddlers before two of age. Babies are frustrated with their parents who do not know how to communicate with them in sign language. See Amy Cohen-Efron's vlog, "The Greatest Irony," (audio available). Tory writes:

I had a thought earlier that the surgery procedure probably has improved greatly and when a baby is implanted how would the dr know if the baby has lost balance if the baby has not yet walked or just started to walk?

I agree with you. That is one of the reasons I am against aboutthe cochlea implantion in babies and toddlers before two of age. Babies are frustrated with their parents who do not know how to communicate with them in sign language. See Amy Cohen-Efron’s vlog, “The Greatest Irony,” (audio available).

]]> By: Tory http://www.mishkazena.com/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/comment-page-1/#comment-6243 Tory Wed, 06 Feb 2008 15:33:31 +0000 http://blog.deafread.com/mishkazena/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/#comment-6243 Jean Boucher, I have a question to ask you. If any hearing parent consults you in regard to cochlear implant for her child, what advice you would provide to her? I would be honest with the parent; pros and cons of CI. I would not omit any important information from anyone. Everyone should know the side effects of the surgery. I had a thought earlier that the surgery procedure probably has improved greatly and when a baby is implanted how would the dr know if the baby has lost balance if the baby has not yet walked or just started to walk? Thats a new thought for us to ponder. When adults go through the surgery, i suspect its much more invasive than a baby. I could be wrong. The hearing parents, whether we like it or not, have rights to decide what to do with their babies. Please dont shoot me down LOL for saying that but it is true and I'm being honest. By the way, wow you really experienced negative side effects, whew! It sounds pretty bad to me. Im sorry youre going through this. Jean Boucher,

I have a question to ask you. If any hearing parent consults you in regard to cochlear implant for her child, what advice you would provide to her?

I would be honest with the parent; pros and cons of CI. I would not omit any important information from anyone. Everyone should know the side effects of the surgery. I had a thought earlier that the surgery procedure probably has improved greatly and when a baby is implanted how would the dr know if the baby has lost balance if the baby has not yet walked or just started to walk? Thats a new thought for us to ponder. When adults go through the surgery, i suspect its much more invasive than a baby. I could be wrong.

The hearing parents, whether we like it or not, have rights to decide what to do with their babies. Please dont shoot me down LOL for saying that but it is true and I’m being honest.

By the way, wow you really experienced negative side effects, whew! It sounds pretty bad to me. Im sorry youre going through this.

]]> By: Look on the other side of the coin http://www.mishkazena.com/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/comment-page-1/#comment-6218 Look on the other side of the coin Wed, 06 Feb 2008 06:38:41 +0000 http://blog.deafread.com/mishkazena/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/#comment-6218 I got the implant in the 1980's (was one of these "experiments"), suffered no adverse side effects (except headaches that happen if I suddenly turn on my implant after months of not using it), my parents were not misinformed, my speech and hearing levels paid off as a direct result of my implantation, hearing aids were proven not to work well on me. I was not a "failure". So why did I stop wearing implants? I transferred to a deaf high school. There, the deaf students, faculty and staff all got on my case about it, and as a result my self-esteem suffered greatly. I became ashamed of the CI. Unfortunately, I see similar movements happening throughout DeafRead. I got the implant in the 1980′s (was one of these “experiments”), suffered no adverse side effects (except headaches that happen if I suddenly turn on my implant after months of not using it), my parents were not misinformed, my speech and hearing levels paid off as a direct result of my implantation, hearing aids were proven not to work well on me. I was not a “failure”.

So why did I stop wearing implants? I transferred to a deaf high school. There, the deaf students, faculty and staff all got on my case about it, and as a result my self-esteem suffered greatly. I became ashamed of the CI. Unfortunately, I see similar movements happening throughout DeafRead.

]]> By: deb ann http://www.mishkazena.com/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/comment-page-1/#comment-6232 deb ann Wed, 06 Feb 2008 04:46:07 +0000 http://blog.deafread.com/mishkazena/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/#comment-6232 Thank you for giving me the answers! Be peace Thank you for giving me the answers! Be peace

]]> By: Ann_C http://www.mishkazena.com/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/comment-page-1/#comment-6221 Ann_C Wed, 06 Feb 2008 03:09:13 +0000 http://blog.deafread.com/mishkazena/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/#comment-6221 Thanks, Tory, for sharing your CI experience with DR readers. I'm sorry to hear you still experience vertigo attacks. Michele, it is possible to hear with just one hearing aid, provided one has enough residual hearing that, if aided, one can hear the human voice. The only problems would be trying to locate the source of the sound and less "stereo" quality. I know, I've worn only one aid as my other ear has been "zip" ever since when. Thanks, Tory, for sharing your CI experience with DR readers. I’m sorry to hear you still experience vertigo attacks.

Michele, it is possible to hear with just one hearing aid, provided one has enough residual hearing that, if aided, one can hear the human voice. The only problems would be trying to locate the source of the sound and less “stereo” quality. I know, I’ve worn only one aid as my other ear has been “zip” ever since when.

]]> By: Anne Marie http://www.mishkazena.com/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/comment-page-1/#comment-6233 Anne Marie Wed, 06 Feb 2008 02:33:28 +0000 http://blog.deafread.com/mishkazena/2008/02/05/ci-my-love-and-hate-relationship-with-cochlear-implant/#comment-6233 I am a survivor of vertigo trips caused by viral inflammation. it practically kept me in bed for two days every week for three years of my life, the worst part when I started my Ph.d. taking classes and nursing my 6 mos to 3 yr old son during that time. That is why when I see or ever "hear" anything ever going into the inner ear, the real innermost of sanity, I shut my eyes and..think oh please I rather be d e a d..! I learned that more surgeons are able to insert wire into the cochlear without damaging hair cells, the surgical skills have improved to some extent. I WON'T take that chance with my son Noam, F%$#@*!KING h*** no way. His last audio test showed that at 12 mos, he responded to sounds at 80 db instead of 95 db tested when he was 6 mos old. I have friends at 80 db chatting endlessly on cellphone. His audiogram is from 80 db to slow drop to around 90's so with digital..to be tested this Friday can show as much as around 45 db just enough for good laughs on cellphone. There is a research showing that for many case, digital aids will do well enough so no need for re-surgeries, remapping, fighting with insurances, etc. Tory, I do not want to tell that you made a poor judgment, it was hard to know how bad side effect could really rock you like this. I fully understand your desire for opportunities you could have enjoyed if it is not for real lousy vertigo problems. I thank you very much for sharing your truth with us. It is important that CI corporates be H O N E S T about medical risks, I do not believe their research saying at least 1% I think it is more than that. Anne Marie I am a survivor of vertigo trips caused by viral inflammation. it practically kept me in bed for two days every week for three years of my life, the worst part when I started my Ph.d. taking classes and nursing my 6 mos to 3 yr old son during that time. That is why when I see or ever “hear” anything ever going into the inner ear, the real innermost of sanity, I shut my eyes and..think oh please I rather be d e a d..!

I learned that more surgeons are able to insert wire into the cochlear without damaging hair cells, the surgical skills have improved to some extent.

I WON’T take that chance with my son Noam, F%$#@*!KING h*** no way. His last audio test showed that at 12 mos, he responded to sounds at 80 db instead of 95 db tested when he was 6 mos old. I have friends at 80 db chatting endlessly on cellphone. His audiogram is from 80 db to slow drop to around 90′s so with digital..to be tested this Friday can show as much as around 45 db just enough for good laughs on cellphone.

There is a research showing that for many case, digital aids will do well enough so no need for re-surgeries, remapping, fighting with insurances, etc.

Tory, I do not want to tell that you made a poor judgment, it was hard to know how bad side effect could really rock you like this. I fully understand your desire for opportunities you could have enjoyed if it is not for real lousy vertigo problems. I thank you very much for sharing your truth with us. It is important that CI corporates be H O N E S T about medical risks, I do not believe their research saying at least 1% I think it is more than that.

Anne Marie

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