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Cookie Bite Causes?

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Hi everyone,

Well a little bit of background, I discovered I had a hearing loss in my mid-20s and got hearing aids which were awful! They ended up in my drawer and I never looked back. Now, I am in my mid-30s went for a hearing test and was told I have a cookie bite loss and it’s definitely worse from the test in my 20s. My questions are: What causes this kind of loss and is it progressive? Any ideas? Thanks!

250- 500 -1K- 2K -3K -4K -6K -8K
R: 0 10 35 45 35 20 10 10
L: 0 10 45 45 35 25 10 10

Wearing Oticon Ino’s Bilaterally with open dome.

17 people in this conversation14 min readJump to latest

Just a guess here. Graph your numbers and they will start up, curve down then back up.
What does it look like?
A bite out of a cookie.
Little loss at the upper and lower end.

I am 49 and was diagnosed with “cookie bite” sensorineural hearing loss this fall (saw family physician, audiologist, then ). I first noticed problems with my hearing three or so years ago. Thought it was just too much loud rock and roll in the 70’s, but no! Cookie bite, or midrange, hearing loss is usually inherited, so said the ENT and confirmed by my research. Nobody has been able to tell me whether my hearing will worsen or not–most have a “just wait and see” attitude. I just got bilateral hearing aids (Siemens––can hardly see them), and I’ve noticed a huge difference in my hearing in just a few days. As a nurse, I am unable to use my stethoscope with the BTEs. I called the audiologist, and she is planning to set a temporary program that will hopefully allow me to use any ordinary stethoscope (basically turns off/on the hearing aids with the push of a button) at work. L and R lows are in the 50 decibel range at this time.
I would appreciate any suggestions on the use of stethoscopes with hearing aids…thanks much, KTS

Ktangos,
If you do a search of stethoscope and hearing aids you will probably find more posts than you care to read, but if I remember right the consensus usually was to get an electronic stethoscope. I know 2 retired doctors who wear and both used electronic stethoscopes.

I’ve checked out the variety of stethoscopes online—and the prices! :eek: Plus, I really don’t need amplification stethoscope-wise yet as I sill hear low frequencies well with the cookie bite loss. I hope that if my audiologist programs my to turn off/on with a simple touch that I can use my current stethoscope. The tube from the hearing aid into the ear didn’t dislodge or seem bothered at all when I tried things out last week–I just couldn’t hear with the competition of the amplified sound with the hearing aids on. I just don’t want to be taking my hearing aids out all day long–and I really do need them at work otherwise. I am new to all this and have lots to learn…:rolleyes:

Ktangos, can you tell me what model Siemens hearing aids you got?

I also have a cookie bite loss, I was diagnosed at age 41, six years ago. My audiologists think I was born with it and I seemed to have coped fairly well all my life, until more recently. To me it seems to be getting progressively worse, but my stay the same! Age, stress? It’s not just me that senses it, my husband has noticed and so have my colleagues. Because my work involves a lot of verbal communication I have finally decided to investigate hearing aids.

This forum is very interesting, but I know that cookie bite is rare and not as easily treated. I’d appreciate any advice from anybody. Thank you!

I got the Siemens Pure 501s. They are going to take time to get used to caring for and wearing, but the improvement in my hearing is well worth the time, money, and effort this is taking. I had been complaining about my hearing for going on three years, but it finally became apparent that I needed evaluation–plus the nurses I work with let me know it was time to get things checked out! I was surprised with the cookie bite finding, especially that this is usually a hereditary type loss. Interesting that your aren’t reflecting that your loss seems to be getting worse to you…what does your audiologist say about that?

Hey guys would you mind posting your ? It would be fun to compare :slight_smile:

Oh and I am using the Oticon Ino’s with open domes (so far, itch city happening lol) I have fantastic sound happening and really satisfied! Going in for a first follow up soonish.

250- 500 -1K- 2K -3K -4K -6K -8K
R: 0 10 35 45 35 20 10 10
L: 0 10 45 45 35 25 10 10

In reply to @Ktangos

I found that the stethescope wouldn’t fit properly in my ears with the hearing aids () in place, so I ended up getting a Cardionics electronic with foam headphones. I’m hearing heart and lung sounds I’m not sure I ever heard before. Really great and worth the price. It is a little bulky though.

In reply to @Ktangos

@Ktangos said:

I was surprised with the cookie bite finding, especially that this is usually a hereditary type loss. Interesting that your audiograms aren’t reflecting that your loss seems to be getting worse to you…what does your audiologist say about that?

They don’t say much - I actually went to get a second opinion because I didn’t believe it! One of them said that with this kind of loss, the reason it gets discovered late is because our coping mechanisms may be not as strong as when we were younger. So gradually it becomes more obvious that we can’t hear as well as other people. If you’re tired, stressed, distracted, just older, you have a harder time being as focused as when you were younger and with hearing loss you need to work hard to listen, whereas people who can hear just hear without effort. I am under a lot more stress, and I’m certainly less sharp than I was in my 30s.

@smartcookie said:

They don’t say much - I actually went to get a second opinion because I didn’t believe it! One of them said that with this kind of loss, the reason it gets discovered late is because our coping mechanisms may be not as strong as when we were younger. So gradually it becomes more obvious that we can’t hear as well as other people. If you’re tired, stressed, distracted, just older, you have a harder time being as focused as when you were younger and with hearing loss you need to work hard to listen, whereas people who can hear just hear without effort. I am under a lot more stress, and I’m certainly less sharp than I was in my 30s.

I believe this, especially as the brain is such an important factor in helping us to cope with hearing loss. But the brain ages, right along with the rest of us.

DianaS–so the foam headphones fit over the ears/hearing aids? I have the type also. I can still hear, but I do wonder what I might be missing.
smartcookie–one thing my audiologist said was that she tought that I’d been “working hard a long time to hear well.”. All the factors you mention seem to make sense.
Thanks for the responses–I am going to check out the Cardionics if I can’t get anywhere with the audiologist today.

@Ktangos said:

DianaS–so the foam headphones fit over the ears/hearing aids?

They fit over the ears but not the aids. In a noisy environment (I work with screaming children) I mute the aids so the microphones aren’t picking up the extraneous sounds and amplifying them. If I remember right, there was a 30 day return on the Cardionics. Let me know how it works for you. Good luck.

In reply to @Ktangos

@Ktangos said:

I am 49 and was diagnosed with “cookie bite” sensorineural hearing loss this fall (saw family physician, audiologist, then ENT). I first noticed problems with my hearing three or so years ago. Thought it was just too much loud rock and roll in the 70’s, but no! Cookie bite, or midrange, hearing loss is usually inherited, so said the ENT and confirmed by my research.

Exact same thing here. I thought it was loud concerts. I remember seeing The Who at Madison Square Garden when I was 14 and my ears rang for close to a week afterwards. Hearing loss in my family is wide spread and seems to skip a generation. My father’s hearing is pretty good but his father had problems and his 5 aunts were all fairly deaf. I remember that the receiver for their hearing aids were worn in their pearls so when they would talk on the phone they would hold the handset upside down so the listening part was next to the receiver. I thought that was really weird as a child and could never quite understand why.

My mom used to tell a story that she met my dad’s aunts for the first time when they were sitting on rocking chairs on the porch of their large Victorian house in Deal, NJ. They were knitting and complaining that my Aunt Sarah wasn’t taking care of herself. She never spent much time on her hair, didn’t bother to put her teeth in, etc. My mother thought that Sarah was one of them and when she asked my dad, he told her that her hearing aids were off and the others were talking about her but she couldn’t hear them.

The audiologist programmed a temporary shut-off program yesterday, but I wasn’t able to hear nearly well enough with my traditional stethoscope with the receivers still in the canals; she wants to try another thing or two next week when I go back for a recheck, but it’s looking like I may end up with the electronic type stethoscope with headphones as suggested here.
My mother and paternal grandmother both had hearing loss as they got older, but I never spent enough time around other relatives to remember if anyone had apparent loss or wore hearing aids. I let my brothers both know that if they experience any hearing loss issues that they should probably get checked out. My has about the same decibel loss as yours, JeffNJ, but I think mine is shifted slightly to the left (don’t have a copy right now). I, too, remember concerts so loud that I could feel my body shake with the bass and, yes, couldn’t hear a thing after. :eek:

Hey Y’all!
I’m new to the Forum and appreciate being able to connect with others who have this bizarre Cookie-Bite Loss hearing issue. I too have also been told that the cause is almost guaranteed to be Genetic…My Father and Grandmother both had hearing problems. Unfortunately, I never bothered to get their records when they were alive to know for sure if they had a Cookie Bite Loss…It’s been too long since they’ve been gone, so I won’t be able to find someone who has those records.

My feeling is this…Perhaps the Cookie-Bite hearing loss is a symptom of a different issue…They both had Heart Disease. Perhaps the Cookie-Bite Loss was a secondary effect of that.

What do you people think? Can we find a correlation amongst the Forum members of not only family history of the Cookie-Bite Loss, but perhaps some other health factor that’s involved??? Maybe too much dairy in the diet???

I don’t have hearing aids yet, but will be getting them shortly. Within the next 3 months. I would have put down my hearing stats, but I’ll wait when I get tested again. It’s similar to other people with this cookie bite loss.

I’m glad that I’ll be getting hearing aids and be able to hear better, but I’m scared that it will continue to get worse over the years and cause me problems again down the road. I want to find a cause of this cookie bite loss. To simply state that it’s genetic is to almost say that we’re giving up on finding a cure. I want a cure or a prevention.

Those with a cookie bite loss please weigh in and tell me what your family history is with hearing and other health related issues. Maybe also ethnic origin. Perhaps there’s a connection there too.

I’ve spent some time looking this up, and have been meaning to start writing to anyone who researches midfrequency loss. As far as I have found, the actual research says it can be hereditary, idiopathic, or from vestibular schwannomas. What I also found, though, was info on the mutation of the TECTA gene, DFNA 8/12, which talked about issues with proteins and amino acids.

Look up this link: Mid-frequency DFNA8/12 hearing loss caused by a synonymous TECTA mutation that affects an exonic splice enhancer - PubMed54

I don’t really understand any of this, (and if there are any scientists reading this please explain!) but it seems to me that this doesn’t necessarily mean that the hair cells are “dead,” like I’ve always been told.

What I’d like to know from other cookie biters, is what kinds of issues you have that don’t seem to fit with what we’re told about hearing loss. Like, I’m driven absolutely crazy by noises that it seems like I shouldn’t even be able to hear, according to my , like breath noises and very faint mechanical/fan noises. And I swear that, if a noise is left on long enough (as opposed to the short beeps of the audiogram), at some point my brain notices it and starts paying attention to it, and then I just cannot habituate to it. I am constantly bothered (unaided) by noises that, when I mention them to people with normal hearing, I get the response, “oh, I can hear that, but I wouldn’t have noticed it if you hadn’t mentioned it.”

Does anyone else have anything odd like that?

Have cookie bite loss … from birth, been wearing hearing aids since 4 years old. Mother and 5 brothers all wear hearing aids. None of my kids, nieces or nephews wear hearing aids. Will be interesting to see how the next generation fares.
Hearing has been stable over the past 50 years, so good part is that I have not had the constant adjusting to new loss levels that comes with a degenerating loss.
Downside is that it is very hard to find good hearing aids. Most of what is out there seems to be for the old man’s loss of high frequencies. So what works for others does not for me. Find analog hearing aids far superior to digital . That does not seem to be the case for people with other hearing loss curves.
I can hear high sounds almost near normal, but missing the speech range.
Very frustrated with my latest HA search … but that is a topic for another thread.
Would be interesting to hear from the audiologists as to whether those with cookie bite hearing loss are a bigger pain to fit than other types of loss.
I need to find my and post with my signature.

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