Cookie Bite Hearing loss

What is “cookie bite” hearing loss?

Are there other types of loss with names?

I clicked to go to the Hearing Loss Group, then could mor find this question.

It's a rare ( 0.7% - 1 % of people with hearing loss) usually genetic form of hearing loss affecting mid range sounds which is speech, while high and low sounds are normal.

Cookie-bite hearing loss is indicated when an audiogram results are shaped like a bell or the letter “U” and indicates mid-range frequency hearing loss. It is a type of sensorineural hearing loss caused by damage to the inner ear or nerve that transmits auditory information to the brain.

The 'speech banana' diagram at the link below shows where typical sounds fall on an audiogram. An individual's tests will show the types of sounds that are missing with a particular audiogram. The most common audiograms are sloping from the left to the right. Most people lose the higher frequency sounds but are able to hear the lower sounds, thus men's voices are easier to understand than women's and children's. The sounds that exist within 'the speech banana' are the consonant sounds that clarify speech understanding.
https://ohns.ucsf.edu/audiology/education/peds
Do you have a copy of your audiogram?

Yes I do...Attached. Your comments or suggestions for where I see someone who can fit me with hearing aids that specifically address my hearing loss would be greatly appreciated. I don't think mine help me much because they uncomfortably amplify the high and low unless I turn them down in which case I get less benefit I have the Phonak Audéo M. I am in the SF Bay Area and have Kaiser but willing to go outside of Kaiser to get better help.
Thank you!

Your hearing loss is moderate, but it hits right in the 'speech banana' area. I encourage others who are reading this discussion to chime in if you experience 'cookie bite' hearing loss. Most people with sensorineural hearing loss have a sloping audiogram which starts high on the left of the chart and goes down like a staircase as it moves to the right. Regardless, hearing aids must be fit properly to work well. Fitting your type of hearing loss properly would require 'real ear measurement'. Do you know if that test was done by your provider?

Are you familiar with the Hearing Loss Association of America? (HLAA) There are several HLAA chapters in the San Francisco area. People who participate in HLAA experience hearing loss themselves. Chapters bring people together to discuss options, experiences, technology, etc. I encourage you to connect with them. I do not know the geographics of the S.F. area, so am not sure which chapter is nearest you. The information below is from the Penninsula Chapter, which is a very active group. It is likely they will share information that will lead you to help. The national HLAA website is at: http://www.hearingloss.org

Peninsula Chapter
Details: Meet 1st Monday, every month except Jul and Aug, 1 p.m. - 3 p.m.
Location: Veterans Memorial Senior Center (Goldstar Room)
1455 Madison Ave.
Redwood City, California 94061
Contact/s:
Sally Edwards info@hearinglosspen.org
650-365-4848
Robert Hall info@hearinglosspen.org
650-867-5256

Thank you very much for all this very helpful information. I had no idea there was so much help available and I've been struggling for several years. It's very difficult to find information and my Kaiser providers have never given me this kind of information. I have not had a 'real ear measurement' done. I have reached out today to make an appointment with my Audiologist I saw last time. I doubt they can help me, but I need to do this in order to establish that I need to be referred outside of Kaiser to a provider that can help. I used to work for Kaiser and know there is a system for pushing for an outside referral if they can't provide the services I require. In the meantime I will definitely reach out to a local HLAA chapter. Again I had no idea this even existed. I am very grateful for your help. I feel like I can now pursue getting hearing aids that will help me more. I've felt helpless because no-one specifically addresses my loss. It's so disabling to be in a group and miss a lot of the back and forth conversation. The TV isn't so bad because of subtitles. Many thanks Julie.

@powersij Your message gave me goosebumps because it reminded me of how I felt when my hearing loss was deteriorating to the point where it was affecting every piece of my life! HLAA, which was called Self Help for Hard of Hearing People, Inc. (SHHH) then, gave me my life back! None of the healthcare professionals told me about SHHH. I saw a tiny article in a newspaper about this fledgling organization being formed in Bethesda MD and wrote to them for more information. Had no idea what I was getting into, but I jumped in full tilt and started a chapter in my area of Wisconsin. That was in 1983! The chapter continues to be fun and enlightening.

It continues to amaze me how many people who discover HLAA are dumbfounded that their healthcare pros didn't tell them about the organization. It's almost 'standard procedure' to discover HLAA by accident! Seriously. Isn't that a shame?! Self-help gained by meeting other people who understand what you're going through is huge. Of course, that is what makes Mayo Clinic Connect to helpful.

I hope you'll get some help through HLAA out there. If you're a traveler, you may want to consider attending the national HLAA convention this summer. There's information about that on the national website. http://www.hearingloss.org It's like going to summer camp as a kid. Fun! Everybody understands hearing loss, and the programs are geared towards learning more about coping, technology, etc. Worth every penny to go.

Keep us posted!

Julie Olson (julieo4)
Appleton Wisconsin

Hi everyone,
I was recently diagnosed with mild to moderate “cookie bite” hearing loss and am looking for some direction. My mother has profound hearing loss that started in her late 50s (now has one CI), so this is likely genetic for me. While my new diagnosis is not completely out of left field given my family history, it was surprising to know it is happening earlier in life for me than it did for my mother (I am 38). I was also not expecting the diagnosis because my hearing test was more of a rule out situation- I made the appt 3 months earlier when having some fullness related to allergies, and kept the appt only to confirm things were still normal as they were 6 years ago when I had a hearing test for tinnitus at the time (that has mostly gone away). The reality is that I am having some mild hearing issues when I reflect on certain scenarios (particularly group settings like crowded restaurants).

Here are some questions I have for the group:
1) is genetic testing indicated, and how would it be helpful?
2) should I consider hearing aids at this point even though my experience of hearing difficulties is quite mild? Is there a benefit to adjusting to them sooner rather than later (assuming this will progress)
3) any updated recommendations for hearing aids for cookie bite hearing loss (I know this has been asked before but wondering if there are any updated opinions)
4) any recommendations for audiologists in Minnesota?

Thanks for any advice. This is all new to me and a bit overwhelming.

I am 73 and started wearing hearing aids about eight or nine years ago. I was in sales and started having a hard time hearing my clients.
I would encourage you to get them as soon as possible and look in to TruHearing or another discount hearing aid middleman. They will have a list of Audiologists they work with in your area. I would also not be adverse to going to a hospital in your area and make an appointment with someone in their audiology department. It might cost you by going outside the middleman network but it would be money well spent.
My youngest granddaughter was born with very mild hearing loss and my daughter got her fitted with hearing aids. She just started kindergarten and I was worried the kids might make fun of her. Instead because she was just happy to have them all the kids in her class told their parents they wanted hearing aids like hers. The point is start wearing them sooner rather than later and you will be happy you did.
Good luck.

I was diagnosed with cookie bite in 40’s and was told I already had about forty percent permanent hearing loss. I tried hearing aids at that time at the recommendation of my doctor and audiologist but I just couldn’t embrace them. I waited too long to go back. Finally nine years later I got a pair of Oticons and I’ve worn them every day since. It was hard adjusting to the noisy world that my hearing loss had slowly been tuning out. All this to say, I truly believe if I would have gotten hearing aids sooner I would have adjusted much easier and dealt with a lot less frustration. I might also add your family and friends will have a much easier time communicating with you.