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Hello from a new(ish) cookie-bite-er!

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Hi everyone! I’ve been ‘lurking’ (ie: reading) for the last two days and thought I would drop a line to say hello.

At age 28, after developing a spot of tinnitus and getting my ears checked, I was diagnosed with a moderate bilateral cookie-bite hearing loss that I was told had likely been present since birth or childhood (very symmetrical and with no obvious rapid progression). At the time I was working as a professional classical musician and it was suggested that my high-level training, which started at a young age (10), was part of the reason I’d not been diagnosed - the good ol’ brain being so plastic and adaptive! Not long after my diagnosis (but NOT because of it), I made a big career change and am now a PhD qualified biomedical research scientist working on understanding and treating genetic diseases. This career transition has offered me a different lens with which to view my experience! I also have Ehlers-Danlos Syndrome (collagen disorder - think double-jointedness but it’s pathogenic, haha), was born without one of my draining tear-ducts on the left, and have “congenitally narrow external auditory canals”.

I had a tinnitus flare recently (which has calmed, thankfully) which inspired me to get my hearing checked again, as it’s been >6 years (denial is not a river in Egypt, haha). I’ve lost another 10% or so, still symmetrical bilaterally, and have decided it’s time to consider some assistance. As hearing voices in noise (e.g. at restaurants, at conferences etc.) is a primary concern, my audiologist has recommended I trial the new Oticon Intent 1 aids. I’m in Australia and they’re certainly not cheap (almost fell off my chair!), but I have access to a 60 day free trial AND can pay them off over 3 years interest free courtesy of a payment plan offered by the audiologist.

This is all very new and frankly quite intimidating, but it has been SO comforting to read through the forum here and see the breadth of experience being shared amongst the community. I’m really grateful to have access to such a great network and am sure I will be asking questions as I go through the trial, especially as I don’t know anyone who wears hearing aids!

Thank you for indulging my long intro post if you’ve read this far! And hello (waves enthusiastically) to any fellow cookie-bite-ers in particular :cookie:! I understand that we’re a relatively rare bunch.

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Hello from Scotland. Yes, I gather us cookie-biters are fairly rare and from what my audiologist says, an interesting challenge to prescribe for. Certainly my hearing loss is genetic as I can trace it in my family. Happily not passed on to my daughter who hears like a bat.

Nice to “meet” another cookie-biter! Can I ask if you’ve tried/had much success with hearing aids?

Glad to know you’ve not passed on the trait to your daughter. As far as I know, I am the only one in my family with this pattern of loss - but then again, I’m the only one with Ehlers Danlos (or at least the only one with symptoms) so I am sure it is connected.

I began using hearing aids about 25 years ago with a succession of NHS devices, mainly from Phonak. Currently I have Marvel Bolero 70 (NHS Nathos Nova). I went private a few years ago via Costco and have the late, lamented KS10 (aka Phonak Paradise 90). Hearing aids are a help for me - I can function in the workplace and socially. Are they perfect? No, not by a good margin, but enough to feel confident to want to be in social settings. I do avoid some things because I know the limits of my devices. I also use a remote mic (Phonak Roger) to boost speech comprehension in busy situations (conferences, meetings etc).

@Myrtle said:

denial is not a river in Egypt

Hello! I started losing my hearing in my early 20s, but held off until I was almost 60. The first few years I probably wasn’t bad enough to need aids yet, but I wasn’t tested. (Because I certainly didn’t have a problem!)

If you’ve been reading here, you’ve certainly seen the message about costco. I would check it out if it is at all available to you proximity-wise. Best wishes as you begin treatment!

WH

My hearing loss started at a classic cookie bite but i am now losing my high frequencies to boot. It pays to find an audiologist that is willing to go the extra miles to get a correct fitting for your hearing loss.

In reply to @cvkemp

Thank you, and yes, from what I’ve read finding the right audiologist seems to be one of the most important factors. I’m speaking to a second person today (one who is not affiliated with a particular provider) and am interested to see if their opinion is different.

From what I hear, the Oticon VAC+ proprietary fitting rationale is designed with cookie bite type of loss built in as well as the other types of loss. I watched a presentation online from an Oticon VP about their research on cookie bite loss and how they applied what they learned into the VAC+ rationale for it. So make sure your default program in the Intent is the VAC+ rationale so that you can take advantage of this

I had a very audigram as you. After several trails at different brands . I think the most important is choose formula . adult is suitable for this hearing loss than others.

Welcome. My two cents is I started with hearing aids late in life and had mixed results as I went from cheap to expensive brands. I would just say that it takes 30 days to try out a pair to see if they will work for you. I tried $4,000 Signia aids and they were awful for me, but they work for others. Don’t be reluctant to trade your trial aids for a different company’s product. Good luck!

Thank you for the advice! Have you managed to find something that works for you?

I have reverse cookie bite and am so grateful for hearing aids that let me hear those low and high frequencies I miss out on. Try out if you can, and once you decide, trust your audiologist to help you tweak them as needed. I found that I have to go back about occasionally - 6 months or so - to get something tweaked so make sure you can do that without trouble. They are worth the trouble and have definitely helped me. Good luck!

Well, I had a fitting appointment today - was going well, and then part way through the audiologist got an urgent call from his son’s school: he’d been knocked out and needed to be picked up…! So I am going back on Friday :laughing: Nothing like a bit of extra anticipation, haha.

Hello!
I periodically get on here just to see if any more cookie bite discussions come up. I was diagnosed with a cookie bite loss at 9. I’m now 44. I have the Oticon More. Before that I had Widex. Based on what I’ve gathered and tried Widex and Oticon are best for this U shaped loss. I have had an awful time finding an audiologist who has experience fitting this loss. Part of the reason I got on here is because I’ll go to my annual audiology exam in about a week. Curious if technology has improved at all to trial anything new. My audiology office carries Oticon but not Widex. My loss is nearly symmetrical on both sides. I think on my last visit I had a slight drop on my right side.

Hi fellow cookie-biter! :wave:t2:

I am very lucky that I have found an audiologist who is experienced with this kind of loss and who is also independent (not tied to a particular brand of hearing aid), meaning I am feeling pretty confident with the advice I am getting.

I picked up a demo pair of Oticon Intent 1 on Friday and so far am very impressed! Hearing things I never knew made so much noise, haha. After 48 hours I was struggling with lots of extraneous noise (hair against the microphones, which would even be triggered when I smiled/spoke/ate due to jaw/ear movement, for example) and a decent amount of pain in my left ear - so I just dropped by my audiologist and we’ve fitted larger domes. I have really small ear canals so we started on almost the smallest size, but yesterday I eventually worked out they were going in too far and also moving around (hence some of the noise). Switching to larger domes has given me immediate relief and the sound has improved astronomically, I almost can’t believe it.

Obviously I do not have a point of comparison, but from what I have read and discussed with my audiologist it seems as though the Oticon Intents may offer a decent technological advantage for people like us with slightly harder to fit loss that tends to be most ‘symptomatic’ when trying to understand speech in noise. Certainly, I found a cafe environment much easier over the weekend, and that was without the improved fit! Couldn’t hurt to try them if you have access to a trial, I guess? There are a few discussions on this forum regarding these HAs too, which I have found useful to read :slight_smile:

So glad you found someone experienced in cookie bite! And that your trial is going well.

As for the fit, I went with domes to let high and low frequencies enter naturally. Also, the wire length might be too long if you feel they are inserted too deep.

I’ll be visiting my audiologist this week. I’m curious if there’s much of a difference between the Oticon More and Oticon Intent.

Hiya, fellow Aussie cookie biter here. It’s great that you are getting hearing aids sooner rather than later. My only suggestion would be to have a look at Specsavers. I ended up saving $3000 by buying my ’s there (after doing a trial elsewhere) and I’m really happy with them. If you check out my posts there’s more detail there. Best of luck and I hope the audologist’s son is ok!

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