Cookie Bite Hearing Loss: What is the best hearing aid?

Have you gone back to your provider to see if there is something not working right with your hearing aids?

I've been looking for a support group after struggling with this for a few years now. I've been told by audiologists that my hearing loss has probably been there for many years; is probably genetic and not impacted with loud music/sounds. At 66, it all makes more sense now that I have unknowingly used many visual and contextual "clues" previously but in the last few years they weren't helping enough hence my pursuit of help from audiologists. It was good to read and relate to the postings here but still a bit in the "dark" of the next steps. I've tried Costco with Rexton, 6 months and gave up and returned...albeit the staffing was not helpful in adjustments. Lived with it for another year and went to a local audiologist with certifications and experience. Of course, most of their clients are typical hearing loss patients not reverse cookie-bite loss. I've been working through the second go around with hearing aids since November of '24. First aids were Phonak Audeo L30-R RITE, now on Starkey Al 16 mRIC. I've had a great experience with this staff....and yet feel so dissatisfied with results. My conversations are mostly all “tinny and reverb” with the aids in and many times I just find myself working hard to tolerate all the other amplified sounds so I could try to hear or separate out the sounds I want/need to hear. I also experience tinnitus which disappears for the most part when I use the hearing aids BUT when I remove for sleeping, the tinnitus comes right back sometimes disrupting my sleep. I'm aware that isolation is not helpful, something which I struggle with since I'm a communicator at heart, yet work from home. I've seen the self-isolation creeping in since in a group setting of any kind the words just mush together or disappear completely, especially in smaller places like a car, or an enclosed room with all my kids and grandkids around or a classroom or Dr/Dentist offices. Music while driving (especially with others in the car is definitely not enjoyable anymore). Is there a place in this community to post your audiograms and find others who have a similar one to share their progress or enlighten my next steps? I'm thinking about returning the Starkeys and starting over again. I’ve had Real Ear measurements, tried domes, open domes, no domes (which seem to be the closest since my ear canals are a bit narrow) and multiple visits adjustments. Even though this office and staff are stellar I'm just not sure I can find an audiologist that specializes in reverse cookie bite hearing loss since it is not typical. I’m open to any input.

A 'cookie bite' hearing loss isn't common, but there are many people who have it. In most cases of sensorineural hearing loss, the audiogram is sloping from higher on the left to lower on the right. This shows that a person is hearing better in low frequencies than in higher ones. A reverse slope shows just the opposite. With 'cookie bite' the graph looks a bite out of a cookie as it goes down and comes back up. Severity is determined by how far down it goes. Those lines define the hearing loss. (The first diagram below looks more like a V than a bite, but it shows the loss goes up and down and would be called a 'cookie bite' loss.) The second diagram is more common as it starts high and goes down for the most part. With more serious hearing loss the lines will go farther down.

The yellow piece in the graphic is often referred to as 'the speech banana' as it shows where most of the sounds in speech are heard. It's worth googling that term as it will show you different sounds, types of sounds, etc. that relate to loss indicated on your personal audiogram.

'Cookie bite' hearing loss isn't 'typical' It varies in frequencies from more common types of sensorineural hearing loss. It affects different frequencies. Because of this it is more challenging to fit hearing aids to it.

Today's hearing aids, compared to those of even a decade ago, are more capable of being set to help different types of hearing loss. However, they are like programming complex computers. It's not just a matter of putting on hearing aids that amplify. They must amplify and clarify in specific frequencies. In this case, some that are not typical.

If I knew I had this type of hearing loss I would ask a provider if they had experience with 'cookie bite' fittings. You're obviously asking that question now and are looking for that kind of expertise.

I am wondering if the hearing aids you are using have BlueTooth and Telecoils? Have you tried using any assistive technology that goes beyond the hearing aids? Example: A hearing loop system in a performing arts center, worship center, meeting room, etc. There are also many smaller personal devices that will connect with BT that can help in noisy social settings. Did your audiologist mention of demonstrate any of them?

Is there a university school of audiology anywhere in your area? You might want to seek information there if that's possible. Your experience could be a teaching moment for them.

I hope you find help and encourage others with this type of hearing loss to share their experiences.