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10044RE: [Loops_and_Telecoils] a hearing loss story

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  • Cynthia Moynihan
    May 18, 2017
      In my particular cookie bite loss, the CCI is not an option for now. They requested a balance test and the results indicated a potential risk due to imbalance issues. So they opted to pass on the CI at that time. 

      On May 17, 2017 17:34, "'John Woodgate' jmw1937@... [Loops_and_Telecoils]" <Loops_and_Telecoils@yahoogroups.com> wrote:
       

      I don't see why a CI couldn't cope with cookie bite, if the trouble is in the cochlea or middle ear. But there might be a neurological reason that I don't know about.

       

      With best wishes DESIGN IT IN! OOO – Own Opinions Only

      www.jmwa.demon.co.uk J M Woodgate and Associates Rayleigh England

       

      Sylvae in aeternum manent.

       

      From: Loops_and_Telecoils@ yahoogroups.com [mailto:Loops_and_Telecoils@ yahoogroups.com]
      Sent: Wednesday, 17 May 2017 21:53
      To: Loops_and_Telecoils@ yahoogroups.com
      Subject: RE: [Loops_and_Telecoils] a hearing loss story

       

       

      I’m curious. Won’t cochlear implants help people with cookie bite audiograms?  

       

      Also, I can’t help sharing this from the 2nd national SHHH convention held at Stanford University in 1986. Rocky arranged to have a panel of hearing aid manufacturers present to us. They definitely did not now their audience! By then, thanks to the first convention (Chicago 1984), many of us were using telecoils and assistive devices.  The manufacturers were blown away by the people’s questions and comments.  They were offended by the challenges presented at that presentation. It took several years after that to get any of the hearing aid manufacturers to participate in our convention exhibits.  They had never listened to their own customers.  It was obvious they were taken aback.  We’ve come a long, long way since then.  SHHH deserves a huge applause.  So much of what we have now is taken for granted, but it took tons of educating and advocating by volunteers to get things started.  Back then, people with audiology degrees were diagnosticians. They were not licensed to sell hearing aids. Only hearing instrument technicians could sell them. I believe that was nationwide.  Changes came in the late 80s or early 90s.  There’s lots of interesting history, and those of us who have worn hearing aids since the 70s have had a lot of interesting experiences.

       

      Julie Olson

       

      From: Loops_and_Telecoils@ yahoogroups.com [mailto:Loops_and_Telecoils@ yahoogroups.com]
      Sent: Wednesday, May 17, 2017 1:19 PM
      To: Loops_and_Telecoils@ yahoogroups.com
      Subject: Re: [Loops_and_Telecoils] a hearing loss story

       

       

      I cannot speak for others, but share what my personal situation was in the early 70's.  When my U shaped hearing loss was discovered, despite nationwide search for assistance, there were no hearing aids which focused on the mid range loss. Hearing aids at that time amplified low and high sounds with greater ease. However, they did not have the means by which to turn off the low and high range sounds and focus on amplification in mid range only.  So despite the search, the options were simply not there until around the late 70's/early 80's.  

       

      It did appear the hearing aid manufacturers were limited in what they were willing to offer others.  The focus was on profits and what they felt would serve hearing loss users best, as opposed to listening to the consumer.  This thankfully changed over time thanks to increased competition among hearing aid/cochlear implant manufacturers, introduction of HLAA (originally SHHH), the baby boomer generation which forced the hand for manufacturers listen to the consumer, in addition to a variety of other factors.  Today, my hearing is basically gone in low, mid and high.  There is no more U shape loss and I am now considered deaf.  The silence I wake to each morning, minus the wondrous tinnitus that seems to grow with each passing day, is short lived.  Every day, I can wear hearing aids and use ALD's  which allow me to function in a limited capacity in the hearing world.  May the future continue to provide additional technological advancement for those who desire to participate in the hearing world!

       

       

       

        

       

      On Wed, May 17, 2017 at 11:56 AM, 'John Woodgate' jmw1937@... [Loops_and_Telecoils] <Loops_and_Telecoils@ yahoogroups.com> wrote:

       

      It has been perfectly possible to compensate cookie-bite (and reverse-slope) from the earliest days of electronic hearing aids, but no-one was motivated to make aids for minority users. In fact, the most difficult technically is compensating ski-slope.

       

      With best wishes DESIGN IT IN! OOO – Own Opinions Only

      www.jmwa.demon.co.uk J M Woodgate and Associates Rayleigh England

       

      Sylvae in aeternum manent.

       

      From: Loops_and_Telecoils@ yahoogroups.com [mailto:Loops_and_Telecoils@ yahoogroups.com]
      Sent: Wednesday, 17 May 2017 16:30
      To: Loops_and_Telecoils@ yahoogroups.com
      Subject: Re: [Loops_and_Telecoils] a hearing loss story

       

       

      Cookie bite loss is thankfully not the norm!  But welcome hearing from others with a similar diagnosis.  I was informed the cookie bite is genetic and hits every other generations.  In my family, only females have been diagnosed with this genetic disorder.

       

      My loss was discovered in 3rd grade which reflected strong hearing in the low and high range but a dip in the mid range (thus the essence of the term cookie bite on the audiogram).  The original thought was I would be deaf by age 21.  My hearing loss doubled at that time, but I did not become what is considered deaf until years later.  The complexity at the time was the inability to amplify mid range sounds by way of hearing aids until years later (until I was close to age 21). Thankfully, today's technology allows for a wide variety of options, even for cookie bite loss individuals.  For which I am very thankful!  

       

      On Tue, May 16, 2017 at 2:48 PM, 'Mike Langner' mlangner@... [Loops_and_Telecoils] <Loops_and_Telecoils@ yahoogroups.com> wrote:

       

      According to my audiologist, my “cookie byte” hearing loss is absolutely genetic !!

      Just a quick, corroborating, very short story !

      Mike/
      ______________________________ _________

       

      Mike Langner
      929 Alameda Road NW
      Albuquerque, NM 87114-1901

      (505) 898-3212 home/home office
      (505) 238-8810 cell
      mlangner@...

       

      From: Loops_and_Telecoils@ yahoogroups.com [mailto:Loops_and_Telecoils@ yahoogroups.com]
      Sent: Tuesday, May 16, 2017 11:53 AM
      To: Loops_and_Telecoils@ yahoogroups.com
      Subject: RE: [Loops_and_Telecoils] a hearing loss story

       

       

      Thank you for sharing this Dave. So very interesting.  I also have hearing loss history in my family, but it skipped a few generations before hitting me. My great grandmother was deafened in her 20s. My grandmother did not have hearing loss, but both of her daughters became hard of hearing in their 60s. My only first cousin and one of my two sisters, now in their 60s both have adult onset hearing loss. My progressive hearing loss was diagnosed when I was 22.    The medical community that diagnosed me, and that which has treated all of us more recently, has never seemed to think there is a genetic connection.  I realize this is highly complex, but I wonder.

       

      I am so thankful for my cochlear implant!

       

      Julie Olson

       

       

       

      From: Loops_and_Telecoils@ yahoogroups.com [mailto:Loops_and_Telecoils@ yahoogroups.com]
      Sent: Tuesday, May 16, 2017 10:22 AM
      To: Loops_and_Telecoils@ yahoogroups.com
      Subject: [Loops_and_Telecoils] a hearing loss story

       

       

      In case it would be of any interest, I tell a story of my mother's--and my--hearing loss, the identification of the precise gene that has caused it, and exciting prospects for gene therapy that may spare others our experience . . .  here

       

      Dave Myers

      www.davidmyers.org

      www.hearingloop.org

       



       

      --

      Respectfully,

       

      Cynthia Moynihan,

      President, HLAA- Florida State Association Board

       

      Join us in our 2017 Let's Make Hearing Loss Visible Campaign!

      Visit our website and facebook page today!

      website:   hlaa-fl.org 

        

                                                         

       



       

      --

      Respectfully,

       

      Cynthia Moynihan,

      President, HLAA- Florida State Association Board

       

      Join us in our 2017 Let's Make Hearing Loss Visible Campaign!

      Visit our website and facebook page today!

      website:   hlaa-fl.org 

        

                                                         

       

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