Cookie Bite Causes?

[seb]

mmystery man,
Sounds like a good case for heredity and it sounds like it comes from your mom’s side with her and all 5 of your brothers all wearing HA’s and none of your kids or their kids needing aids. From what I’ve read on the HA Forum over the last couple years those with cookie bite loss seem to have a lot more problems with today’s HA’s and getting them to work right for them.

[sortofcookiebiter]

I’ve had my HAs programmed by four different audiologists. I actually wrote to a hearing aid research scientist, who said that, as far as he knew, there’s been little to no research on fitting cookie bites. So that’s the problem. Everyone is so well meaning, but they’re just guessing. There’s certainly not a disciplined approach to making changes.

I have been thinking that we all should get printouts of our settings and share them so that we can see if certain settings seem to correlate with better hearing.

[TBallgame]

Don Schum at Oticon has written some notable articles on fitting special configurations of hearing loss. Not of ton of evidence included or magic answers, but you might find it to be an interesting read.

Hearing aids, information on hearing loss and tinnitus | Oticon

[sortofcookiebiter]

Do you know what that means, though? I know my UCLs drop hugely in the higher frequencies – from 98 at 300 to 81 at 7K. I’ve fought and fought and fought to not be in pain from high pitched noises. My audiogram only appears to have one MCL on it, not a range across frequencies.

[Caronis]

@sortofcookiebiter

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.

link shown

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.

I looked up the link you posted and found it exceedingly difficult to understand…I have wondered the same thing; that maybe the cookie bite hearing loss is not related to the hair cells, but perhaps within the auditory mechanism in the brain…Unfortunately, this link is too difficult to understand if that is what is being said…

It’s a shame that important research, like this, is not well-communicated to the larger community…

[ybowman]

@Carl77

Thanks for the reply but I know what it looks like already

My questions were if it was progressive and what are the potential causes? Thanks!

I was just recently diagnosed with cookie bite hearing loss. What my Dr. told me is that yes it is progressive, but the good thing about this type of hearing loss is that I will never go completely def. Now I didn’t think to ask what percentage my hearing would go down to. It is a inherited hearing loss, that doing some other research found that if your mother had German measles the child can end up with cookie bite. I then found out that my mom did have German Measles. My big issue right now, is that my insurance does not cover hearing aids.

[cvkemp]

My hearing loss started out to be pure cookie bite but over the years as my hearing has gotten worse it is still a cookie bite but now I am losing my high frequencies too. My loss start as mild to moderate and has gone to moderately severe to severe and have been told that it will be profound at least in my right ear before too long. My worse issue is understanding speech. And I am getting to where if there is any noise I can forget understanding what anyone says.

[jeanettedove1]

Can anyone on this thread share what hearing aids they currently use to correct their cookie bite loss? Are you happy with them?

[cvkemp]

First off there is no cure for any form hearing loss. I myself wear Oticon OPN1 ITE hearing aids.

[jeanettedove1]

I wasn’t implying there’s a cure. I’m asking which hearing aids are being used for it?

[jeanettedove1]

Are you satisfied with your hearing aids?

[cvkemp]

I love them, even with it taking also 16 months to really get them the way I want them. But let me say this we are all different and we all are use to different hearing environments. So what I find the best others with the same hearing loss my not be able to stand. I have been wearing Oticon aids for over 10 years so I am use to the sound.

[Lorjoh]

I use Phonak Marvel 90R - when I don’t have them in I can’t hear much of anything (the TV, husband, birds, dishwasher, the cat meowing for food etc). It’s a real relief to put them in and be able to hear everything in the mornings. I have had them since they first came out last year. I trialed lots of other brands and all sorts of tips and in the end it came down to Resound or Phonak - I chose Phonak because they made better fitting custom moulds. The Audio is still tweaking them but I don’t need anything else (as in Roger devices) to assist. It makes a huge difference if the person programming them is knowledgable with cookie bite hearing loss.