Cookie Bite Hearing Loss Suggestions and Experiences.

Hello @betsays, I can relate, I also have cookie bite hearing loss and it's an extremely frustrating hearing loss. I find my hearing aids are insufficient in many situations. The moderator Julie here has made some very helpful suggestions for me and I expect she will respond to you also. I haven't got very far yet but I'm waiting for another appointment with Kaiser and I plan to push for them to refer me to an outside specialist if they can't provide the service I need. I know exactly what you mean because I feel they don't understand 'cookie bite' and I want to see someone with experience in this rare hearing loss. I find the hearing aids I have when turned up drive me crazy with the magnification of other sounds which don't need magnification. I have Phonak hearing aids.
Good luck and I'll share any progress I make.
Ingrid

My audiologist also told me that I have cookie bite hearing loss but never explained what that is. He did fit me with very expensive hearing aids ($4000) that were no more than amplifiers. Two years later he told me that he had adjusted them as much as he could and that I would need new ones ($5500 - $6800) I could not afford this and so I do without them. You really do miss so much when you can't hear!
Good luck to you and I will keep you in my prayers.

This is exactly my issue, I was shown new hearing aids at Kaiser for $6,000, they said there was more adjustability in them to turn down the annoying unwanted amplified sounds leaving the improved the speech range sound. But as you said that's a lot of money and I want to find someone who actually has experience with specifically cookie bite hearing loss before I think about a new pair.

Thank you all for the feedback. I will be due for new hearing aids in about a year. I’ve had my current ones for almost a year. They are rechargeable but unfortunately they run out after 12 hours so if I have a long day….they shut off. Im wondering if cochlear implants are considered for a color bite hearing loss. An audiologist mentioned this to me early on but my diagnosis was still new to consider it. Thanks again. Betsy
PS I really enjoy talking to those who can relate!

Hello Betsy. It's good to ask questions. People who share your experiences can offer a lot of help, sometimes the kind of help and support we expect from the hearing healthcare professionals who serve us but who don't provide the supportive help we need. We need to have our feelings validated rather than minimized! Not just by those healthcare professionals, but also by our friends and family members. Moderate hearing loss is a challenge.

Hearing loss can affect every facet of our lives, and it hits us hard in social settings. Adult-onset hearing loss is complicated. It's a major life loss, not a mere inconvenience.

Do your hearing aids have telecoils or BlueTooth? Did your audiologist explain telecoils and the wonderful technology they can connect with to you? Accessory devices that can be used with our hearing instruments can make a huge difference in noisy social settings. Special phones can help in work settings, as can other hearing assistive technology. Unfortunately, audiologists don't always tell us about what is available.

A cookie bite diagnosis affects a different range of sound than a more typical loss does. The skill of the person who is fitting and setting your hearing aids is always important, but possibly a bit more challenging with the 'cookie bite diagnosis. Is your audiologist using 'real ear measurement' when fitting? Here's a bit of information about REM. https://www.healthyhearing.com/report/53319-Real-ear-measurement-hearing-aid-fitting

I always encourage people with hearing loss to check out The Hearing Loss Association of America (HLAA) for information and support. See if there is a chapter in your region. Learning from other people who are going through the same experiences you are is a positive approach to adjustment. http://www.hearingloss.org

Thank you for the encouragement. It’s definitely a work in progress. I don’t know how to use telecoils or Bluetooth so o think I need to research that. I still use my phone on speaker phone. I have visited the hlaa website. Thank you! Also again - cochlear implants for cookie bite? Is that a good match. Thanks.

Hi Betsys,

Be sure to ask your doctor about bone conduction hearing devices when you ask them about cochlear implants. They utilize a different technology than cochlear implants (sound is transferred and "heard" via skull vibrations whereas cochlear implants tap right into the auditory nerve) and they might be what you need to catch those mid-range sounds. Additionally, you don't have to train your brain to interpret the sounds as you might have to do with a cochlear implant; with bone conduction devices, the sound is more akin to natural hearing.
I have the Osia 2 bone conduction implant, which is a device from the Cochlear brand of hearing devices. I couldn't be more pleased with it. There are other devices from other brands as well--be sure to check out your options.
Best of luck,
Stephanie

Hi again. Happy March! Regarding cochlear implants, I strongly recommend that you go to a cochlear implant center for testing and candidacy determination. While the criteria for candidacy has been lowered recently, CIs are still primarily for people whose hearing loss is severe enough that hearing aids are not working for them. You will want to find out more about what your hearing aids can do.

I do not understand audiologists or hearing instrument dispensers who don't share, explain and demonstrate how telecoils work. Same for BlueTooth. Sad to say, but it's kind of like not selling you the 'whole package'. We pay a lot for quality hearing instruments. If we don't know all they are capable of doing, we're not getting our money's worth. FYI, a telecoil in a hearing aid adds little or no cost. $15 at the most. Bluetooth (BT) adds substantially more ($1000) and is a more recent technology. A lot of providers diss telecoils and push BT. That validates the high price, right? I highly recommend having both.

Telecoils work in venues that have installed hearing loops, FM systems or infrared systems. They also work well with laptop computers, iPads, tablets, portable radios and any audio device that a headset can be plugged into. You use a device that goes around your neck (neckloop), plug it in and turn on the telecoil. Eurika you hear only the sound you want to hear very clearly. If a hearing loop is installed in a venue, all you have to do is turn on the telecoil to get sound right from the sound source you want to hear. While hearing loops are not installed everywhere, they are in many place. And, will be installed in many more if people will get out and advocate for them. Telecoils were developed originally for phone use. They still work with phones, but have so many other possibilities. Those who learn can also become 'teachers'.

Your provider needs education on this. Are you willing to ask questions of him/her?