Hearing Loss: Come introduce yourself and connect with others

I found dr thompsons site. Very good and interesting approaches.

Hi Denise! I’m Stephanie. Have you looked into bone conduction hearing devices? I have the Osia 2, and the operation and device were covered by my insurance company even though hearing exams and hearing aids aren’t covered. I used an amplifier while waiting for my implant, so I understand the limitations and frustrations that come with those.

Hi Stephanie,
Thank you for the suggestion. I asked about a Cochlear implant and I was told by the audiologist that my hearing wasn't bad enough. Is what you are describing a Cochlear implant?
Thanks again. Very nice to meet you. - Denise

Nice to meet you too, Denise!

Great question! No, the bone-anchored technologies are different from cochlear implants. That being said, it does get confusing because the brand of many bone-anchored devices is Cochlear and the devices are implants, but they're not cochlear implants.

To my understanding, cochlear implants bypass all of the ear and link directly to the auditory nerve; whereas, bone-anchored hearing devices bypass the middle and outer ear, but create vibrations that the inner ear picks up or "hears." Some popular types of bone-anchored devices are Cochlear's Baha (several versions), Cochlear's Osia, which I have, and Medel's Bonebridge.

I'm deaf in one ear and have moderate hearing loss in the other. I could have gotten/could get a cochlear implant on my deaf side, but I opted to just improve my existing hearing by getting the Osia on the side with moderate hearing loss.

The sound processor portion of the device (the external part) attaches to my head via a magnet (sounds strange, but it's completely comfortable and feels comparable to wearing a barrette) and has microphones on it. These microphones receive sound and send an electronic signal to the implanted portion of the device (under my scalp), which is attached to my skull (again, sounds strange, but is really cool), and causes the transducer portion of the device (under my scalp) to vibrate against my skull. The inner ear picks up these vibrations and allows you to hear. The sound is very natural and indistinguishable from what your ear is picking up itself.

I encourage you to check it out! It's an out-patient surgery that generally takes 1.5 hours, though mine took 3 hours for some reason :). Pics of my device are shown below (showing and behind my hair).

Hi Stephanie,
This is amazing technology that I've never heard of. I'm going to look into this. Thank you for letting me know about the technology and your experience with it.
All my best, Denise

another response to @denisemarys
I have Meniere's, haven't heard anything useful from the right side for nearly 40 years. Three years ago, I bought a hearing aid from Costco for my "good" ear, due to age-related deafness (almost $1,600, but far less than the $3,500 the same aid would have been elsewhere, without the Costco brand name). Two years ago, Meniere's went bilateral, and I spent a year nearly totally deaf, unable to wear my one aid due to recruitment, which is part of the "fun" of true Meniere's. It took a year for me to find a doc willing to prescribe large doses of hormones to someone in their late 70s. Once I did, hearing returned to where it had been before going bilateral, and the hell of recruitment ended. I went to the Vestibular Center at Portland's Good Samaritan Hospital for a brush up on vestibular rehab, which I've done every day since Meniere's became a problem to long ago.

Recently, two things occurred to me. First, I knew that I had heard some slight sounds with my bad ear while nearly deaf. Second, the hormones had reversed the Meniere's recruitment in my good ear, so my useless ear should also have far less recruitment, be aidable. Wednesday I went to Salem Costco for another hearing test. The woman there who prescribes aids (not an audiologist but extremely knowledgeable, more than the two audis I've seen) will have a pair of new aids ready for me to try out in two weeks. She has recently fitted someone else who was nearly deaf in one ear, hadn't heard out of it for years, with some success. My present aid is working at the very top of its usefulness, as age-related deafness has increased further. The new aids, thanks to increasing work to improve them, are not only better/stronger, but the pair will only cost $1,800! In addition, Costco charges NOTHING for hearing tests, adjustments, repairs, maintenance parts like wax filters and extra domes--a clinic with an audi charges for those things. I'll have as much time as I want to spend walking around inside the store for a first try out--I'm taking a woman with me for the in-store trial, since high voices are hardest for me. If the try out works, I'll buy the aids and have a full 30 days to return them for a full refund. Even though I may only wear this older aid for two weeks before buying the new pair of aids, the fitter adjusted them to match the changes she saw in my hearing test--at no charge, of course. All this just as the total warranty on my present aid will come to an end! That warranty includes stupid things I might have done, like yanking off a mask and stepping on the aid while searching for it or forgetting to remove it before washing my hair, which is pretty surprising. Since my present aid will need to be replaced before too long due to my increasing level of HOH in my "good" ear, I don't see that I have a great deal of risk involved in buying the new pair...unless they flat just don't seem to do the job.

She also told me that I'll need to go to a speech pathologist to maximize the benefit of the new aids, to help me understand what I hear. That should be covered by my really great medical insurance.

Even if there's not a Costco in your town, it's well worth driving to one! On top of everything else, they sell batteries in packs of six cards--for less than it costs to buy one card at a drugstore. The nearest Costco to me is 60 miles away, with a half-dozen others within a hundred miles.

Wow, what an amazing journey you have had! I'm pleased you are able to hear now and you are getting the help you need. Also, thank you for the tip about Costco hearing aids. Really good information to know ☺️. Best regards,
Denise

Hi Denise, Welcome to the hearing loss discussion group. You sound a bit like me, measles and noise most likely led to my progressive sensorineural hearing loss. I suspect I'm a bit older than you, so the timeline of progression is longer. 🙂 My HL worsened over time as I was told it would. I am thankful that I learned about assistive technology that goes beyond hearing aids years ago when I became involved in The Hearing Loss Assn, of America, Inc. The organization was in its infancy then, so I had the advantage of growing with it as people with hearing loss started insisting on better products and also on communication access in public places. For all of us with sensorineural hearing loss, background noise is our greatest problem.

My first experience with an assistive listening device (ALD) was with a hearing loop that allowed me to bypass that noise by using the telecoils in my hearing aids. I could hear the presenter at a meeting! Amazing!! Back then, before Bluetooth add ons to hearing aids, the HAs were primarily amplifiers. But, that telecoil option allowed me to connect to hearing loops, FM systems and Infrared systems. Those are wonderful but they have to be available. That's why we advocate.

So what do you do in personal situations where noise is an issue? Well, I soon learned that specific ALDs can connect directly to my hearing aid. Those devices allow me to use a tiny hand held microphone or table mike that brings the desired sound directly to my personal hearing devices. It bypasses the majority of the ambient noise in the room and I can participate.

That personal technology has evolved over the years because the HA industry, in some ways, has recognized that people with hearing loss really do want to hear. Unfortunately, their efforts to make that possible has increased the cost of hearing aids considerably. I was using ALDs with my analog hearing aids that cost about $500 each, a far cry from the BlueTooth models they are selling today for $4,000 apiece or more. The industry has been more focused on making hearing aids less visible than making them better. (My personal opinion.) All the ads market denial. Hide it, don't show it, etc.

It is likely that your hearing loss will progress as mine did. Today I am a 'bimodal' user of both a hearing aid and a cochlear implant. I do very well with these personal devices, but still depend a lot on the ALDs in social settings.

I hope you can get a better pair of hearing aids. Ask the audiologist who tested you for a copy of your audiogram. You are entitled to that record. Insist on it. While I respect the audiology profession, I also realize that many people cannot afford what they choose to sell. I also know that many are kind enough to allow a decent trial period and payment schedule, but not all do that.

I have hard of hearing friends who have been very satisfied with the hearing aids they have purchased at Costco, for example. Those hearing aids are not 'just amplifiers'. They are brand name hearing aids. They have both BlueTooth and telecoils. They cost about $1400 for a pair, which is a big difference from what your audiologist wants to charge you. Costco also allows a 6 month trial period, which is likely 5 months longer than your audiologist offers. Just pointing out that it might be worth it for you to try that option. If they don't work for you, you can return them.

You should know that most of the Costco technicians are NOT clinical audiologists. They are trained technicians called hearing instrument specialists. A clinical audiologist with the letters AuD behind their name, has a doctorate level degree in the field of audiology. They are obviously more proficient in diagnosing other issues related to hearing loss, etc. Since you know what caused your hearing loss, it's unlikely you are dealing with a medical issue other than that.

Disclosure: I use both a cochlear implant processor and a hearing aid. Due to the severity of my hearing loss I see a clinical audiologist whom I trust explicitly. Costs related to the CI are covered by Medicare. Costs related to hearing aids are not. The Widex aid I have now cost $2500.

As always, I encourage people who are frustrated with hearing loss, which is very common, to explore the Hearing Loss Assn. of America (HLAA). This consumer organization does more educating, advocating and information sharing than all the hearing healthcare professionals on the planet put together. I am very thankful for what HLAA has added to the quality of my life.

There is hearing help out there. Look for an HLAA chapter in your area. Many chapters are holding online meetings now due to COVID. It has given people a chance to connect from all over the country to learn, discuss, vent, and share experiences. You can find information at: http://www.hearingloss.org

Hi Julie, Thank you very much all of the information. I have never heard of the telecoil or bluetooth options. I looked up telecoil hearing aids on the HLAA website and was amazed to read that it uses electromagnetic waves for hearing instead of acoustic waves. Fascinating! Thank you for sharing that with me. You are the second person to recommend Costco for hearing aids. When I have the money, I will check them out. I am already a member of HLAA. There is no support group where I live oddly enough. I have been meaning to pursue Zoom meetings in other locations but have yet to make contact. I will eventually. I have other support groups I attend on Zoom and with the state of my hearing, I find it is much easier to hear than in-person meetings. I forgot to mention that I had an Uncle, who passed away, who could not hear. I always used to think he wasn't friendly, now I know it was his lack of hearing. So sad. Anyway, thank you again for the enlightening information. Best wishes to you!
Denise

@julie04 I thought I would give you a "report from the trenches" on our audiology visits this week. In order to persuade Jerry to see a doctor of audiology, I made an appointment for both of us at the doc recommended by my primary.
It was a great visit - she was thorough, not only in her testing, but her interviewing and explanations. She looked him right in the eye and told him he was not the only one affected by his refusal to wear his aids.
The net result - even though my tinnitus is worse, and my hearing is only slightly decreased from 2 years ago, I am not yet quite at the point of benefiting clearly from an hearing aids. Instead I will be trying some apps to mask the tinnitus when it is bothersome, but I have lived with it for so long that I can normally ignore it.
Jerry's hearing is also slightly worse - and he definitely needs aids, but she looked at his and determined they are 4 & 7 years old and old technology, in addition to being uncomfortable. We will be looking at new aids for him, so now I will go to the hearing discussion group and see what people are saying. She is recommending a Phonak with Bluetooth, because service should be widely available with our two homes. The problem is, of course, the 45 day return policy - which won't work with our travel plans.
What do you think of trying Costco aids? They seem to be well-rated, can be serviced near both homes, and have the 6 month guarantee, attractive because he has had such a hard time adjusting in the past. I figure we can do that, and if they don't work out, still have the Phonak option when we come home in the Spring.