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Thread: Cookie-bite hearing loss

  1. Default Cookie-bite hearing loss

    How many of you have a mid-frequency cookie bite pattern hearing loss? I have one that I was born with and my doctor says it's somewhat rare. Does anyone know how rare it is? I've also learned it makes fitting and wearing HAs trickier. Any "been there, tried that" stories out there? Thanks!

  2. #2

    Default

    I'm a cookie biter, and yes, we are a rare breed. I read somewhere that reverse slope and cookie bite losses combined make up less than five percent of the hearing loss population (but don't quote me - don't know how accurate that is). I do know that my loss is rare enough that I have never worked with a professional who had experience fitting a cookie bite loss.

    I'm hesitant to share my experiences with you as I am afraid you would find it discouraging. I come from a family with lots of hearing loss (though I'm the only cookie biter); mine was first detected at age eight and first aided at fourteen (I'm thirty six). I wore analog aids until about eight years ago, then switched to digitals. I have always struggled with handling loud sounds when aided, and like you, my communication skills unaided have been really quite good. So, I've gone through periods of months and even years of devotedly wearing my aids all the time hoping that I'll learn to cope with the loud sounds, and then I've gone through periods of hardly wearing them at all. At other times, I have not worn them at home, but use them when away from home. I meant to post to your earlier thread about this, but my experience has been that my unaided communication skills decline significantly when I am wearing my aids full-time or part-time. When I go unaided for long periods, my unaided communication improves somewhat. I think my brain just has to figure out what to do and that my speech-reading skills get sharper when I go unaided for long periods. If you can get aids that are programmed correctly to help your loss, I think you will find the most benfit from wearing them as often as possible, but you will feel deafer when you don't have them on.

    My oldest digital aids were Oticon Digifocus, and they made me truly miserable. I don't believe that the audiologist had a clue about how to adjust them properly. Also, I lived nearly an hour from her office and had a baby and a toddler, so I just couldn't come in for all the adjustments I needed. I was chronically overwhelmed by kid noise, so those aids mostly lived in my pockets. A little more than a year ago, I bought new aids from America Hears. I believe that they might have been an improvement for me except they are unable to handle my recruitment issues (recruitment means that loud noises are perceived to be extremely, uncomfortably loud). The AH aids are slow (can't cope with sudden loud noises), so while they made speech clearer than it had been with my older aids, I have been constantly jumping at loud noises. Its made me very edgey, and I feel awful when my children are apologizing for firmly closing a cabinet door because they see me jump - they didn't do anything wrong! So, I'm trialing new aids again. Currently I'm wearing Phonak Exelia Art micro BTEs with earmolds (I wanted Exelia Art M, but my audi ordered the wrong thing. If I decide to pursue these, we'll get the M). I'm waiting to try out the new Unitron Passport. So far, the Exelia Arts are handling loud noises better than anything else I've tried, but other than that, I am underwhelmed. I know that they need adjustment, and I think there is lots of room for improvement. Unfortunately, my audi (a different one) is still an hour away, and I have four kids to tote along for appointments, three of whom get carsick. So I'm not able to just stop in whenever I want a tweak.

    I guess as far as advice goes, I'd say put all your energy into finding a fitter who knows what they are doing. Any dispenser or audiologist can sell you hearing aids, but getting them adjusted properly is another story. Read up on hearing loss and hearing aid technology and ask intelligent questions. Make sure your fitter is comfortable with your trying out multiple hearing aids before you settle on one. With a cookie bite loss, I would advise you not to buy the first aids you try - do some comparing before you make your (very expensive) choice. If you start to get the feeling that the fitter really doesn't know how to help you, return your aids before your trial period expires and move on to someone else. The fitter is going to be the key to whether you will experience satisfaction with your aids.

    Sorry if my experiences are not encouraging. The audiologist I am currently seeing is not a fitting genius, but she is the best I've been able to find, and she is treating my fitting as a partnership. She turns the computer monitor toward me and asks me what I want her to do. I would rather that she knew herself what to do, but this is the next best thing. She is also supportive of my trying out several hearing aids before I decide, and she has equipment to perform REM testing. She seems to lack confidence that REM will be of any help, but I want her to do it anyway - am hoping we will get closer to getting it right.

    Best of luck to you as you navigate this new terrain!
    mamajoy Hidden Content
    250 - 25
    500 - 50
    750 - 55
    1k - 60
    1.5k - 70
    2k - 60
    3k - 35
    4k - 30
    6k - 30
    8k - 15
    (L and R almost identical)
    WRS 88% at 80db/ 84% at 75 db

  3. #3

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    Quote Originally Posted by mamajoy View Post
    I'm a cookie biter, and yes, we are a rare breed. I read somewhere that reverse slope and cookie bite losses combined make up less than five percent of the hearing loss population (but don't quote me - don't know how accurate that is). I do know that my loss is rare enough that I have never worked with a professional who had experience fitting a cookie bite loss.

    I'm hesitant to share my experiences with you as I am afraid you would find it discouraging. I come from a family with lots of hearing loss (though I'm the only cookie biter); mine was first detected at age eight and first aided at fourteen (I'm thirty six). I wore analog aids until about eight years ago, then switched to digitals. I have always struggled with handling loud sounds when aided, and like you, my communication skills unaided have been really quite good. So, I've gone through periods of months and even years of devotedly wearing my aids all the time hoping that I'll learn to cope with the loud sounds, and then I've gone through periods of hardly wearing them at all. At other times, I have not worn them at home, but use them when away from home. I meant to post to your earlier thread about this, but my experience has been that my unaided communication skills decline significantly when I am wearing my aids full-time or part-time. When I go unaided for long periods, my unaided communication improves somewhat. I think my brain just has to figure out what to do and that my speech-reading skills get sharper when I go unaided for long periods. If you can get aids that are programmed correctly to help your loss, I think you will find the most benfit from wearing them as often as possible, but you will feel deafer when you don't have them on.

    My oldest digital aids were Oticon Digifocus, and they made me truly miserable. I don't believe that the audiologist had a clue about how to adjust them properly. Also, I lived nearly an hour from her office and had a baby and a toddler, so I just couldn't come in for all the adjustments I needed. I was chronically overwhelmed by kid noise, so those aids mostly lived in my pockets. A little more than a year ago, I bought new aids from America Hears. I believe that they might have been an improvement for me except they are unable to handle my recruitment issues (recruitment means that loud noises are perceived to be extremely, uncomfortably loud). The AH aids are slow (can't cope with sudden loud noises), so while they made speech clearer than it had been with my older aids, I have been constantly jumping at loud noises. Its made me very edgey, and I feel awful when my children are apologizing for firmly closing a cabinet door because they see me jump - they didn't do anything wrong! So, I'm trialing new aids again. Currently I'm wearing Phonak Exelia Art micro BTEs with earmolds (I wanted Exelia Art M, but my audi ordered the wrong thing. If I decide to pursue these, we'll get the M). I'm waiting to try out the new Unitron Passport. So far, the Exelia Arts are handling loud noises better than anything else I've tried, but other than that, I am underwhelmed. I know that they need adjustment, and I think there is lots of room for improvement. Unfortunately, my audi (a different one) is still an hour away, and I have four kids to tote along for appointments, three of whom get carsick. So I'm not able to just stop in whenever I want a tweak.

    I guess as far as advice goes, I'd say put all your energy into finding a fitter who knows what they are doing. Any dispenser or audiologist can sell you hearing aids, but getting them adjusted properly is another story. Read up on hearing loss and hearing aid technology and ask intelligent questions. Make sure your fitter is comfortable with your trying out multiple hearing aids before you settle on one. With a cookie bite loss, I would advise you not to buy the first aids you try - do some comparing before you make your (very expensive) choice. If you start to get the feeling that the fitter really doesn't know how to help you, return your aids before your trial period expires and move on to someone else. The fitter is going to be the key to whether you will experience satisfaction with your aids.

    Sorry if my experiences are not encouraging. The audiologist I am currently seeing is not a fitting genius, but she is the best I've been able to find, and she is treating my fitting as a partnership. She turns the computer monitor toward me and asks me what I want her to do. I would rather that she knew herself what to do, but this is the next best thing. She is also supportive of my trying out several hearing aids before I decide, and she has equipment to perform REM testing. She seems to lack confidence that REM will be of any help, but I want her to do it anyway - am hoping we will get closer to getting it right.

    Best of luck to you as you navigate this new terrain!
    MamaJoy;

    I think if she measures your Ucl she can input those data on the Rem machine along with your thresh. data. The she could also verify audibility, she could also verify that the HI do not exceed the UCL measured. Ideally, the best thing is to use speech stim.
    (speech mapping)

  4. Default

    MamaJoy,

    Thank you for all the details! I am in the process of getting my first HAs and am trying to read up, as much as possible, on it. I have a list of questions and thoughts to go over with my audiologist. So far, I've had two appointments with her, plus my regular ENT appointment in conjunction with the testing. I keep reading, in various sources, that cookie-bite hearing losses are among the most difficult to fit, for HAs. So I do want to be prepared.

    Also, music is very important in my life (with live classical violin and piano, as well as listening to recordings and attending concerts) so I am extremely picky about sound. I know there is no such thing as a perfect fit. However, I plan to work with my audiologist to do the best we can in fine tuning... she says she is up for it.

    Like you, I also have severe recruitment. That has been a big pain for me, all my life, even with no HAs.

    My life is so varied as far as environment-- I'm around kids a lot, I'm outdoors, in public areas, concerts, classrooms... it changes frequently. I will be curious to see which environments truly benefit from HAs and which are still problematic.

    By the way, have you tried anything with bluetooth sound? Or have you used the telecoil? Telephones are a big problem for me so I am very curious about how these devices really work. I do really well, face to face, with communication. But put me on a phone and it's just sad.

    Ok, actually one last question: my audiologist says cookie-biters often do better with snug, custom ear moulds and not generic open-fit RITEs. Have you found that to be true, for yourself?

    Thanks for the help!

  5. Default

    I am in the process of getting new hearing aids myself, and I thought I would share my experiences as well (if it would help).

    Like mamajoy, I have a reverse slope and cookie bite (looks kind of like the Nike insignia). My hearing aid specialist mentioned that someone else had the same type of chart, but had less difficulty than me when it came to hearing. There is another factor involved, which I failed to consider--epilepsy. I have it (which contributed to my hearing loss to begin with), and the other individual does not. It may (but does not necessarily have to) have an impact on how one interprets sounds. Part of the brain needs to breack down sounds in a way which they can be processed as information (words or language). I don't do it quite as well, because of both the epilepsy and the hearing loss (where some sounds get lost).

    While hearing aids help, they are not cure-alls.

    I am currently looking into my fourth set. My specialist says there have been advances since 2006 (which I missed out on, as I got my last ones in 2005). Obviously the key is trying to have a hearing aid that lifts the frequencies you are missing out on, without raising the other frequencies. However, in doing that (if it does it successfully), you will be hearing things "different" than you are accustomed for two reasons:
    1) the sound is being filtered and played through a mini-microphone
    2) if you are hearing sound as it should be heard (and hearing aids are not perfect, but improving), then you are not hearing as you USED to hear.

    Analogy: imagine a colorblind person who could not recognize the color green finally having his/her vision "corrected." Trees look different, and so does the grass. It alters one's perception.

    I have never been fully comfortable with hearing aids, because, like mamajoy, I do not like having too much amplification. I just want to have the lost sound restored, so I can carry a basic conversation. I am still a bit cynical, because each time there is a new advance, I am urged to remain cautious, because again, nothing will give me perfect hearing.

    HOWEVER. A friend who is deaf gave me a link to an article on nerve implants. They are about 5 years away, but they promise to boost sounds on all frequences (unlike the implants out there now). This would be advantageous to those of us who are in the silent minority.

  6. Default

    Hi Loudhands,

    Every bit of information helps, thanks. I had often thought about the effect of hearing something for the first time... that is, how would I recognize what is normal. I don't know what having better mid-frequency hearing is like, unless it is just like when I use my stereo's equalizer to bump up all the middle frequencies when listening to music. If it's anything like that, then I am happy to say that I recognize the improvement when I boost those frequencies. : )

    But I know that real-life scenarios will be very different from a stereo's music. I expect to have to take some time to get used to "new" background noises. And like MamyJoy and you, I do have some concerns about my HAs over-amplifying anything. My audiologist said she would be very careful about how she programs, though.

    My main goal, with HAs, is to continue good communication where it is still good (i.e. keep my brain trained), and to improve it where I have troubles: in noisy places, outdoors, on the phone, and with soft speaking people who don't move their lips much or emote when they speak. Ok... just a little teasing there. I know the issue is equally mine for having ears that don't hear what other ears can hear (hence, getting HAs). I know that people don't always understand how to speak to someone with a hearing loss... and that's a whole other topic!

  7. #7

    Default

    Quote Originally Posted by MaM View Post
    How many of you have a mid-frequency cookie bite pattern hearing loss? I have one that I was born with and my doctor says it's somewhat rare. Does anyone know how rare it is? I've also learned it makes fitting and wearing HAs trickier. Any "been there, tried that" stories out there? Thanks!
    The audiologist referred to my hearing loss as a cookie bite too. right now I wear analog hearing aid for 5 years and it's my first hearing aid. I always been HOH, but I really don't know how much should I expect from top digital hearing aid. The hearing aid I have now just rises all frequencies all together I have trouble understanding speech in music since I was young I mean the lyrics of the song, speech in noise, soft noise/voices, and of course can't hear someone a couple of meters away. when my tv is not loud enough all I heard is the sounds of s/th/zzz, very sad. I am interested in the exelia art H/S or F/S with blue tooth connectivity my other option is the pure 700 CIC. it will be great if everyone of you cookie bites as well as audiologist posted reviews and helpful tricks and tactics about programming technics.

    R/L
    250 = 40/45
    500 = 50/55
    1000 = 70/65
    2000 = 60/55
    4000 = 60/50
    6000 = 50/55
    8000 = 45/25

  8. #8

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    Id be checking for cochlear dead regions! Some cookie bite audiograms may have dead regions at a band before the rise or where the worst thresholds are.

    As for programming the HA, if there's alot of residual hearing in the highs, don't amplify those and program the HA as if the audiogram is sloping.
    My Hidden Content 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. Getting stem cells soon. Hidden Content got such good results she can hear well without HAs! My hearing loss is the same in both ears. Recent audiogram: 125Hz=65db, 250Hz=75db, 500Hz=95db, 750Hz=110db, 1000Hz-8000Hz=NR at 110db. I discuss my deafness and stem cells in my Hidden Content

  9. Default

    Quote Originally Posted by Deaf123 View Post
    Id be checking for cochlear dead regions! Some cookie bite audiograms may have dead regions at a band before the rise or where the worst thresholds are.
    Please forgive my ignorance: what are cochlear dead regions and how do audiologists check for those? Thanks.

  10. #10

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    Quote Originally Posted by MaM View Post
    Please forgive my ignorance: what are cochlear dead regions and how do audiologists check for those? Thanks.
    the only way is through a test call ten, it was desing by Dr Moore,
    it requieres a 2 channel audiometer and a special CD

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