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#361 (permalink) | |
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Banned
Join Date: Apr 2008
Posts: 7,202
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No, I won't make my 6 year old sit for hours and hours, doing test after test, to *hope* to improve her score a percent. We'll see if the transposition helps, but no one has high hopes. We believe that whatever took her hearing, took the ability to understand speech. She can hear sounds well, but not speech. Just because YOU can hear well, doesn't mean she can. Her hearing loss is different than yours. You were born deaf, she was born hearing and then given a medication that fried the hair cells in her ears. It is a different cause, so the results are different. That is why a CI works so well for her. Her nerve and brain pathways are fine, just the hair cells are messed up. The CI bypasses the hair cells, and she can understand speech. No, they have never been wrong. They were the ones who helped me push to get her the CI in the first place. |
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#362 (permalink) | ||
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I can just see the meltdowns already!!!
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Queer, Deaf, radical disability theorist, feminist, activist, advocate, and linguist. Fear me! NEW BLOG! Jenny~B ![]() http://fiestydeafanddisabled.wordpress.com |
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#363 (permalink) |
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I have worked with quite a few kids that are fitted with naidas. It is 50/50 I think. If she isn't doing worse with it, and she willingly leaves it in then that is normally a decent enough sign of success. Give it a try. I have MUCH experience with Naidas, and my job is all about working with Deaf kids. PM me any time
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Queer, Deaf, radical disability theorist, feminist, activist, advocate, and linguist. Fear me! NEW BLOG! Jenny~B ![]() http://fiestydeafanddisabled.wordpress.com |
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#364 (permalink) | |||||||
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My reasons for choosing stem cells over CI are numerous. Many thousands have gotten stem cells for all conditions with 90% success rate. I have emailed/contacted stem cell centers, read articles, did my research and know the facts. Chloe got such good results she can hear well without HAs! My hearing loss is the same in both ears. Recent audiogram: 125Hz=55db, 250Hz=70db, 500Hz=90db, 750Hz=110db, 1000Hz-8000Hz=NR at 110db. I discuss my deafness and stem cells in my blog |
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#365 (permalink) | ||||||
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Maybe her cochlea is dead to speech above 500Hz just like mine? But doesn't she hear pretty much flat at 85db from 1000Hz to 8000Hz? Wouldn't this mean she has more surviving hair cells than I do? Maybe the damage done to her hair cells had more effect on clarity rather than loudness. She could have more hair cells than me but the quality of her surviving hair cells are lower than mine. I have fewer hair cells than she does but the quality of my surviving hair cells are better than hers. Therefore she hears louder with more hair cells being stimulated while I don't hear as loud with less hair cells but I hear clearer as my hair cells are less damaged. This could be a plausible theory you could discuss with your audiologists ![]() Quote:
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My reasons for choosing stem cells over CI are numerous. Many thousands have gotten stem cells for all conditions with 90% success rate. I have emailed/contacted stem cell centers, read articles, did my research and know the facts. Chloe got such good results she can hear well without HAs! My hearing loss is the same in both ears. Recent audiogram: 125Hz=55db, 250Hz=70db, 500Hz=90db, 750Hz=110db, 1000Hz-8000Hz=NR at 110db. I discuss my deafness and stem cells in my blog |
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#366 (permalink) | |
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Banned
Join Date: Apr 2008
Posts: 7,202
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Ok, you believe that she (and others) could get more benfit from hearing aids. How do you explain that when she had a moderate loss, she also got very little benefit? She was 15 db sloping to 65 db, and she didn't understand spoken language. Her hearing with hearing aids is NOT useful. What part do you not understand? And no, she is not unique. Miss Kat's SLP says that there are lots of kids who get CI's and it is a total transformation. That they thought they were doing "ok" with their hearing aids but then when they got a CI, the difference was staggering. She said she sees it most often with AN/AD kids. You were born with a hearing loss. Do you know why? The cause often affects outcome. Miss Kat's hair cells were damaged, not just missing or malformed. They used to work, and then, after the meds, they didn't. And they have continued to degrade since then. I want her aided to what a professional believes is correct. A professional, Ph D., audiology professor with 20 years experience with hundreds of children. NOT some guy who fancies hi,self knowlegable because he cranked his hearing aids up to 11 and believes he'll fly to China tommorrow and be cured through risk free magic stem cells. |
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#367 (permalink) | |||||
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Wendy H, see my reply to you above.
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IHC=inner hair cells Many parts, but that's why I am here to learn. I believe you but am still trying to learn more about this. I am surprised there's such a wide range of speech scores for given degrees of hearing loss. This even applies for those who get CI so it's not just due to damaged hair cells. We know that everything else about Miss Kat is normal except her hearing. Phi4sius has a severe hearing loss and he scores as high on speech as Miss Kat's CI. This is another thing I don't understand. Ill have to study this phenomenon. I do know there's IHC and OHC and that OHC accounts for only 5% of speech information while IHC accounts for 95% and that if you have no IHC, you have a cochlear dead region. I do know that OHC usually gets damaged first and that OHC accounts for 50-65db of your hearing(from low to high freq.) and IHC accounts for another 20-30db. It's why that guide on cochlear dead regions say that at 70db HL, the chance of a dead region somewhere is 60% and that at 90db HL, the chance is greater than 90%! I now wonder if her ototoxic medicine(s) destroyed almost all her IHC but spared much of her OHC? Ive read that OHC act basically as an amplifier and that if you had no surviving OHC but all your IHC was intact, youd hear normally with properly programmed/amplified HAs that aid you down to 10db or better. It's unusual for the IHC to be badly damaged or destroyed first while largely sparing the OHC. Ill have to Google articles on this and post them in the speech thread. It's something very interesting I and others can learn. Quote:
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My reasons for choosing stem cells over CI are numerous. Many thousands have gotten stem cells for all conditions with 90% success rate. I have emailed/contacted stem cell centers, read articles, did my research and know the facts. Chloe got such good results she can hear well without HAs! My hearing loss is the same in both ears. Recent audiogram: 125Hz=55db, 250Hz=70db, 500Hz=90db, 750Hz=110db, 1000Hz-8000Hz=NR at 110db. I discuss my deafness and stem cells in my blog |
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#369 (permalink) | |
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Registered User
Join Date: Jul 2009
Location: California
Posts: 19
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Hi All, it seems this thread has moved far and away from the original posting of below, so I'll drop out as I'm unable to be of help now. I thank everyone for all the information you provided me in my ramp-up to being fitted with a set of IX. From my heart I wish all the very best in your search for the "best solution" for you. “Best” is what will work for you as an individual with all the unique challenges and problems found in the implementations and solutions available at this time. As to the IX, for me and my problems it has turned out to be the very best solution I’ve ever had the opportunity to be helped with. I’m happy to talk with anyone about the IX and my limited 2 months of use, just PM me. Warm regards to all!
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#370 (permalink) |
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None of my old audiograms gave me a speech discrimination score. Was that on spondee words? My 1998 audiogram, they tried spondee words but I wasn't getting most of them so they switched to numbers and I got many correct at 95db. My hearing also got worse from 1998, I used to hear at 100db at 1000-6000Hz now it's 120+ db!
The speech discrimination score came from a list of words that the audiologist used. I'm not sure which list it came from but I do know that the most recent test consisted of one syllable words. I know that I score higher on a list of words that consist of double syllable words or compound words (i.e. hot dog, baseball, etc.) Perhaps that's why I scored in the 70's (percentage wise) and that was around 1984 (ok, geez that was 25 years ago and I was thinking it was 15 years ago). I could never understand phones at anytime in my life. So yea im glad for emails Definitely glad for e mails for the most part, too! However, I think for myself and for personal reasons I need to get back into using the phone more often. I used to talk on the phone with friends all the time. Now we all use e mails (maybe because over time our lives have changed since friend's children have been born and less time is spent on the phone). I'm sure some of those things contribute to the reasons I've been on the phone less.How do you know a CI in any ear will give you acceptable speech scores? If I had a dead ear, I would have gotten a CI a few years ago in the dead ear. It would at least let me hear with two ears instead of one. Any results in the dead ear would be an improvement over 0% and if a CI in the dead ear can't even match a HA in my other ear, I will be glad I didn't risk my only good ear! Id be saving the good ear and it's residual hearing for stem cells. Definitely any results in a dead ear would do some good. However, from looking at friends that were born profoundly deaf and got no benefit from hearing aids-- I know at least 2 people that received cochlear implants and they only heard environmental sounds and were not able to recognize any speech sounds. That's likely to happen in my left ear and my brain would not recognize it either. The likelihood of getting much better results would be to implant my right ear. However I feel that I function well enough with hearing aids for now (if I'm repeating myself- forgive me-- I'm having enough trouble trying to figure out how to respond to your posts w/ multiple messages. I'll probably screw up and I post this message as I don't see a "preview button" to check how this will come out! Urgh . . . Sorry for possibly making this confusing to read-- forgive me!) It's a big difference from my old Widex Senso HA I had for 10 years. CI or stem cells would be an even bigger difference and could take 6-12 months to adjust! Egads-- still that's a long time to adjust to new hearing aids. I recently got a Phonak Naida V UP and it's not taking me long to adjust at all. Just may have to go back for some tweaking. I definitely hear more environmental sounds and a few other things but not I don't think it is dramatically different from my one year old Phonak analogs (with the exception of the accessories it comes with). If you read my blog(click on audiogram in my sig) youll notice that stem cells are already being used on a handful of people. Those labs are now able to treat any candidate with major hearing loss today! I am just waiting for the pioneers traveling overseas(China in particular) to report back with their results, then me and Phi4sius are next. Hopefully we can get it together at the same time! However stem cells has been used on over 6000 people for other diseases/conditions, including blindness and they experienced fewer complications than those who got CI. Stem cells is natural and can be inserted by injection/IV that easily! If you wish to discuss this more, feel free to post in my blog or in a stem cell thread. Hey, if you're right and you get the stem cells in an acceptable time period for me and it's successful-- let me know cuz I'll sign myself up. I think that if I were to opt for stem cells on my dead hear, I'd have the same results (my brain still would have difficulty understanding/recognizing speech unlike my right ear connected to my brain). Possibly I'd have stem cells done on my right to get close to normal hearing. That would be incredible. I figure functioning with just one ear that responds to close to normal hearing ranges would be nice! Would you be willing to go at the same time as we go? Call me chicken-- I'd tell you to go first and then see how you do and take things from there. Well, let's hope I get this post up correctly because I do not see any 'preview messages' before posting this reply. If I screw up-- eh well . . . . not the end of the world! |
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#371 (permalink) |
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Sorry!
Deafdude--
The above post was for you . . I tried color coding my answers. Obviously that didn't work! My apologies for making the above post VERY confusing to read. For those reading the above post-- I was responding to Deafdudes' questions and comments. : ) Wendy |
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#372 (permalink) | ||||||
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edit: are you online? I sent you an AIM instant message but says you can't accept offline messages? Id love to share my knowlege of stem cells with you.
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My reasons for choosing stem cells over CI are numerous. Many thousands have gotten stem cells for all conditions with 90% success rate. I have emailed/contacted stem cell centers, read articles, did my research and know the facts. Chloe got such good results she can hear well without HAs! My hearing loss is the same in both ears. Recent audiogram: 125Hz=55db, 250Hz=70db, 500Hz=90db, 750Hz=110db, 1000Hz-8000Hz=NR at 110db. I discuss my deafness and stem cells in my blog |
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#374 (permalink) | |
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Banned
Join Date: Apr 2008
Posts: 7,202
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Her loss was 15 db at 250 hz, and then around 60 at the rest of the frequencies. She would lose about 10 db every 18 months until she became a CI candidate, April 2008. I disagree with you about only 20% of speech being high frequency. The phenom "s" is one of the most important fetures of the English language. It conveys plurals, ownership, and sometimes it is the verb of the sentance. If you leave off just that one sound, you are unable to understand speech. As for stem cells, we'll see. I think you'll still be say "soon, soon" ten years from now. |
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#375 (permalink) |
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Registered User
Join Date: Oct 2006
Posts: 310
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I am getting a Naida 5 UP for my unimplanted ear to replace the Oticon SUMO I lost. (I feel like super glueing the thing to my ear, LOL). I have another mapping coming up after I get the Naida so I will be interested in seeing how I do with both the CI and HA. Does anyone know if the redesigned earhook is out? Any other tips besides removing the filters in the earhook if they are there?
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#378 (permalink) | |
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Registered User
Join Date: Jun 2008
Location: Texas, USA
Posts: 216
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USB Hi-Pro knockoffs - Hearing Aid Forums | Hearing Loss | Hearing Aids Unless someone has the access to Phonak's software, https://eservices.phonakpro.com/Cook...on=2&formdir=5 it also seems to be restricted. The link I had seems to have a login..........so good luck!! |
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#379 (permalink) |
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Registered User
Join Date: Dec 2009
Posts: 1
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Phonak Naida IX accessories
Hi All,
I am new to the forum and I have some questions regarding the Naida IX accessories. A little about myself: I was born deaf with profound hearing loss in both ears. I wore analog (last ones were oticons I think) up to about prolly 10 years ago (I'm 43 now). Approximately 14 years ago my left ear went out almost completely to the point where I can't hear out of it even with a hearing aid. I switched over to Phonak Supero in my right ear and noticed a dramatic improvement in my hearing. It was definitely an ear opening experience for me. My first experience with an all digital hearing aid was a widex (not certain which one) and it was disastrous for me. I absolutely hated it and was quickly frustrated with not being able to control it. It was constantly changing and it would make these obnoxious knocking sounds when it did it.:ugh: Needless to say I immediately switched back to the Supero. So when my current audiologist wanted me to try the naida IX, as you can imagine I was quite leery and skeptical of it. I have had the naida IX for about 2 weeks now and I absolutely love it. I think the audiologist I have is awesome and she seems to understand how to make these work like I want them to. Not an easy task given my history. So now I am trying to figure out what to do from an accessory standpoint. Currently I am using the iCOM which I mainly use with my cell phone as a bluetooth and as an audio headphone to connect through cable to the computer, iPOD, and TV. I do not have FM yet but I am asking for this capability now to try out. I was wondering if anyone out here can tell me how well the current smartlink works as compared to the zoomlink or easy link. My audiologist is telling me to go with the zoomlink and iCOM because it is so much easier to use the iCOM for bluetooth devices since it is more automatic. Also she says that the smartlink has no remote control over the naida IX aid. So if anyone has any experiences with these devices I would greatly appreciate any advice you could give me. Thank-you in advance |
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#381 (permalink) | |
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Registered User
Join Date: Jun 2008
Location: Texas, USA
Posts: 216
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The newest Smartlink, the Smartlink+, has newer bluetooth technology (version2.0) and pairs a lot better that the older Smartlink. (wish I had it) It is supposed to be able to set up to MP3 players and other stereo profile devices. SmartLink+ - Overview | Phonak - life is on Check this out on the Smartlink+ details: http://www.phonak.com/content/dam/ph..._teenagers.pdf The pros I like on Smartlink+ versus iCom is the portability. The cons is the cost, which is about $2500+ versus about $300 for the iCom. If you need to have FM for use in meetings, classrooms, etc., then I would use the Smartlink+ for everyday use... Hope this helps!! |
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#382 (permalink) |
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Registered User
Join Date: Jun 2008
Posts: 1,635
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I've been using my phonak naida. it has been working great for me. i'm understanding things a little bit more clearly ever since i got it. I went to my audiologist last tuesday [i think] and got it adjusted, he forgot to turn on the compressor of my hearing aid oops!!
But i am going to my CI audiologist to get my mapping adjusted as well to make the programmings balanced out so i can hear better. But overall i'm pretty happy right now.
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#383 (permalink) | |
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Joe's Friend
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#384 (permalink) | |
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The link didn't work, how do I get phonic to adjust my new naiad? My audie may take awhile to get to my needs.
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#385 (permalink) |
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Registered User
Join Date: May 2006
Location: Canada
Posts: 3,956
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phonak can't adjust your aid..your audi would have to get a phonak rep to come and help with adjustments and suggestions on how you could maybe make it sound better..but you cannot directly deal with phonak yourself regarding those issues
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#388 (permalink) |
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Registered User
Join Date: May 2006
Location: Canada
Posts: 3,956
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like everyone else said it's all about getting used to the aid...if your transposition is on (soundrecover) than that definitely takes some getting used to as its shifting different sounds into a different frequency that its not normally heard in so that you can hear it...it took a month or so to get used to it..and a few trips to the audi for adjustments as well..
mine are ok..only complaint is I find it too noisy ...picks up a lot of "static" noise..all the stuff i don't wanna hear..but they're the best for now anyway..eventually i wanna get a CI for one ear but I don't qualify right now |
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#389 (permalink) |
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Registered User
Join Date: Feb 2005
Location: Good Ol' KC
Posts: 223
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Hiya Alicia...I got a question for you. I am gonna be getting Naida ix up in a week. My insurance sucks ass big time. They wont cover nothing so that means I will be paying for them out of my own pocket. My audi...who is a "big time" audi here in my town, suggested I get 2 aids. Told her that there was no way I can financially afford 2, so we would have to settle on just 1. FYI, I have always worn 1 ha all my life. The only exception was when I was a lil kid wearing those bra type hearing aid..you know..the body bra strap with a box in the middle of your chest with 2 wired molds to your ears? Yeah..long time ago.
Anyways...question....from your personal experience..is wearing 2 VERY beneficial...or do you think you could get by with wearing 1? I am right now at 90% loss but with my analog hearing aids..I can hear about 55% assisted. Cheers Roland aka Dodge Trucker
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Respect everyone's opinion. Don't like their opinion? LIVE WITH IT!! |
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#390 (permalink) |
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Registered User
Join Date: May 2006
Location: Canada
Posts: 3,956
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you should get two hearing aids and get the naida V instead in my opinion
the IX features compared to the V are only bluetooth for the phone which i dunno if you use the phone or not and it has a "zoom" feature but dunno how great that is either..IMHO i'd get two naida V's instead of two naida IX's |
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