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Cookie-bite hearing loss

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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 trickier. Any “been there, tried that” stories out there? Thanks!

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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 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 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!

Edited

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 measured. Ideally, the best thing is to use speech stim.
()

MamaJoy,

Thank you for all the details! I am in the process of getting my first 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 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 ? 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. :wink:

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

Thanks for the help!

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.

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 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! :smiley:

@MaM said:

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 , 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 . 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

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

As for programming the , if there’s alot of residual hearing in the highs, don’t amplify those and program the HA as if the audiogram is sloping.

@Deaf123 said:

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.

@MaM said:

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

Hi. I have a sort-of cookie bite hearing loss, and I’m also new to hearing aids. My experience is a little different, though, in that I’m pretty happy with the “hearing” part of the hearing aids, but having difficulty with actual physical problems with the aids.

I’m wearing Siemens Motion 700 – they’re allegedly , but they’re not quite that small as they have a program button on them and bluetooth ability (which I haven’t tried.) I wanted something in the ear, because I do a lot of dancing and yoga and so am often spinning or standing on my head and I was afraid that behind-the-ear ones wold fall off. They’re my first pair, and my audiologist set them so that the “regular” program is in fact a program for noisy environments. I wore them all of the time for a few weeks, and I could immediately hear pretty well. My main problems are with soft speaking people (like my husband), and the peepy voices of little children. A lot of people I hear perfectly fine. With the hearing aids, I could hear children fine. I could hear the waitress in the restaurant. I could hear in noisy situations. I was pretty astounded at the lack of effort it took to hear people. At first, everything was very loud – I left the audiologist’s office and went straight to the library. I walked in and thought, “You have to be kidding if you think I can tolerate this.” In the library! But within a couple of weeks I was pretty used to it, and the things I hated about the aids, like a tendency for things to sound tinny, and weirdness around the letter ‘s,’ were far less annoying than not hearing what people were saying.

I got the aids adjusted a couple of times to lower high frequencies and to take out the ‘s’ issue. Then I ended up sending them back because they kept wiggling out of my ears, plus the program button was doing random things. They were remade to sit deeper, and the vent was made bigger because I wasn’t crazy about how my voice sounded. When they came back, they were way too big. Plus they sounded terrible. After trying to adjust them for an hour, the audiologist finally tested them and discovered that they weren’t working right. So I sent them back again, and again they came back too big. So now I’m waiting… again.

I asked my audiologist what’s so tricky about cookie bite, and she said it’s that hearing aids are really targeted at high frequency loss, so you have to change them a lot from how they come from the manufacturer, and you have to lower all the high frequency stuff.

I interviewed a bunch of audiologists, by phone, before choosing one. I figured that if they wanted to make a big sale, they’d be willing to answer my questions. I chose the one who seemed (and who can really tell, by questioning) the most knowledgeable about cookie bites. I didn’t think about how often I’d need to go in there, though. I’ve been to the office six times in four weeks. It gets tedious.

If my hearing aids come back and fit properly, I do NOT plan to try multiple aids. After all the adjustments were made, they really sounded quite natural.

The advice I’d offer to you is to be persistent. It’s a hassle, being asked “does that sound better?” and saying “no,” and being asked, “does that sound better?” and saying no… I feel like a giant pain in the you-know-what. But it’s worth it.

Xbulder - Thanks for your suggestions. I will share what you said with my audiologist.

MaM - Music is very important in my life too - I sing, play piano and guitar, and direct a childen’s choir. I’m sure that my love of music has made my acceptance of my hearing aids lower. For many years, I took my aids out when I was making music, but I’m finding that it doesn’t really sound right without them anymore either (as my hearing declines). So, I’m trying to get used to live music with the aids, but its hard.

As for telephone use and bluetooth. . .I use an amplified phone which works very well for me. It has tone control which allows me to boost the lower frequencies. I can use it with or without my aids in pretty succesfully. Let me know if you’re interested in the specific model. As for bluetooth, I am currently trying out Exelia Art with iCom. Before I got my iCom, I was not using my cell phone at all - I just really couldn’t hear on it. But with the iCom - wow! It is really amazing! It is also great for listening to music. I was not sure that bluetooth was going to matter to me with my next purchase, but now it does.

As for wearing traditional molds v. a fitting, well I’m still trying to figure that out myself. I’ve worn skeleton molds for a lot of years, but one of the biggest issues that I deal with regarding music is occusion and how strange (and loud) my own singing voice sounds. Also, I have very tiny ear canals with tortuous bends, and getting molds to fit well and stay in place is challenging (they move when I smile). I tried a pair of Epoq XW RITE aids for about 5 days, and the feel of the receiver in my ear drove me crazy. I’m sure that we could have worked on a way to make them stay in place better and get them more comfortable - they were demo aids that I was not really interested in, so we didn’t go to any effort about it. While rationally it seems to me that with molds would be better, I do want to give a RITE fitting a try and see what I think. I’m trying out the new Passport as soon as my audi can get it in for me - she ordered the BTE and the Moxi 13 (a RITE aid) so that I can try them both.

Oh, and . . .I use mine a lot, but wish they were a better solution. I do not use my telecoils on the telephone - I just find that the buzz is too annoying and distracting, better to just put the phone near the top of the aid. I do use my telecoils for use and other , though as I’m getting a feel for how much better the iCom sounds than the telecoils, I am looking for ways to use iCom with ALDs instead. I guess that’s another thing I should touch on - ALDs. While I know that many people consider FM usage to be for only those with the most severe losses, I have found that FM use has helped me manage situations where my hearing aids alone let me down. You mentioned hearing in noise, and I am afraid that as a cookie biter, you may be disappointed about how you will hear in noisy situations with aids. I find my FM system to be indispensible in noisy environments where I just really have to stay on top of the conversation. I also use FM at church, where we have really lousy acoustics, and when I see live theater. I lead a weekly children’s program that requires me to lead singing along with recorded music in an auditorium-type room. In those conditions, I cannot hear the music well enough to stay with it with my aids alone, so I have the sound guy line my FM transmitter into the soundboard and wear the receiver with my music links (which work with my t-coils). Its a pain, and I look a little like a Borg, but at least I’m still able to manage an activity that is important to me. I hope that at some point I have aids that are functioning for me better so that I’m not needing to lean so hard on FM, but for now its better than not hearing.

It sounds like you are dealing with many challenging environments - I would encourage you to try premium aids. The way I understand it, more channels is better when dealing with a complex loss like a cookie bite. And you are right - you are likely going to find that there are environments in which hearing aids improve things tremendously and othe environments in which you may function better without them. For many years, I had mine in and out constantly - milling around in a noisy party (out) - move aside for a one-on-one coversation (in) - step into the kitchen where the dishwasher is running (out) - child comes to speak to me (in) and on and on. I have finally recognized that my hearing is not going to get better (its gotten somewhat worse over the past two years) and that I need to live with the hearing aids in my ears. That’s where the FM system has come into play for me - so that I can manage in those environments where my aids leave me feeling confused.

Looks like I just wrote another book. Feel free to keep asking questions!

FrastNH: My hearing loss isn’t as significant as yours, but I also could rarely understand lyrics in songs. I could never understand why my friends knew all these song lyrics when I was young while I knew none. I used to feel so dumb! Of course, now I understand why I had that problem.

I like your idea of everyone posting their specific experiences with their dealing with a cookie bite loss. I will post my experiences after I get the first pair to try out.

SortofCookieBiter: You mentioning yoga reminded me of yet another reason to use HAs. I ended up quitting yoga classes because I was a newbie and could not hear a word the instructor said when she was teaching the moves and saying whatever it was that she was saying. …and when my head was down on the ground or twisted one way or another, I was not able to see the other students clearly enough to at least copy what they were doing. I kept breaking pose every other second to look all around me. I must have looked odd. ; )

Your recommendation to be persistent with getting the right HA fit seems to be echoed in so many places on this website. I am sure it’s excellent advice and I will try to be very careful that way. Thanks.

MamaJoy: Thank you for sharing your music experiences with … this is an important area for me. I can see how it must be a struggle for you to get the right HAs. I had read, on other hearing loss websites, that musicians are very particular about the sound quality of HAs because it’s not simply a matter of understanding words better, rather there is also a requirement for natural sound and all the nuances that come with music, being an art form. A poorly digitized version coming through HAs would not cut the mustard in most cases. Just hearing the notes is not enough, in other words.

Also, as a performer, one would like to be able to get some proper feedback of the sound one is making. I am not a singer, but I can imagine that would be one of the most difficult types of performing to deal with while one’s ears are plugged up with HAs. I wish you the best of luck finding a good fit for that. I hope the newer models work out well for you… keep us posted!

I used to teach piano and, generally, the piano is a very loud, resonant instrument, so I haven’t had much trouble hearing it. Only one time, when I was performing at a recital, I could not hear what I was playing and I panicked. It was a grand piano whose lid was totally opened up towards a very high loft ceiling. So the sound went straight up and I got very little sound coming back towards my ears. That was a nerve-wracking experience as I had to perform Chopin on autopilot, hoping it sounded the way it was supposed to. I’m no Beethoven and not a professional… I really need and rely on the aural feedback when I play.

My son plays classical violin and I do have problems with my ears buzzing terribly when he plays certain pitches of double-stops. He plays in perfect pitch, so I don’t mean to imply he is playing something that sounds bad. He isn’t. It’s my ears that are over reacting to certain sounds. I wonder how they will react once I have HAs.

As for phones, right now I also use an amplified phone. I don’t use a cell phone but would like to be able to. I am so happy to hear you are having a great experience with bluetooth in that regard! And that’s also good to know about using the for . That will be a whole new experience for me.

After much research and discussion with my audiologist, the first HAs I picked out to try will be Oticon Epoq XW with a custom-fit mould. It had a high rating for natural sound and has plenty of channels to deal with the cookie-bite… I’m crossing my fingers. I won’t expect miracles and I know it will be tough getting used to, at first. It’s too bad the trial period is only a month. I’ve heard it really takes several months of tweaking to get HAs just right. But I will visit my audi as frequently as needed. Thanks for everyone sharing their thoughts and experiences!

@xbulder said:

Ask your audi for a Speech mapping (rem).

Thanks! I added it to my list of questions and discussion topics that I’m taking for my next visit.

Edited

Hi Deaf123,
I just tried the online piano thud test. My computer speakers are quite loud so I don’t know if I set the levels right. (FYI-- my worst loss is 60 decibels in the mid-frequencies in both ears.)

I can hear all the notes. The mid-frequency ones are a little softer but I can hear them fine. However, I notice that a few of the mid-frequency ones don’t resonate and the one at 1046 Hz sounds like it really gets cut off short. I definitely cannot hear the 4 seconds.

So I moved to my real piano and found that about 4 notes in that range of the piano don’t resonate at all. I hear the note, but they sound cut-off whereas every other note on the piano, higher and lower, resonates. Would you know if that means anything other than that I have a mid-frequency loss?

By the way, my steep decline on my is between 500 and 1K. The loss drops about 30 decibels between the two frequencies, in both ears. Then from the 60 decibel loss, it’s a hill that reaches to a 10 decibel loss at 4K. My audiograms resemble big "V"s more than anything. Don’t know if that info helps. Thanks!

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