Another aid. Very frustrated and nearing my limit trialing

Hearing Aids
#21

Oddly, I had the SAME thing going on after REM fitted Phonak Lumity Life aids a year ago. The sound quality was HORRID: flat, like someone blowing over vellum paper. Harsh, no rich sound, like every word ended in a sharp RAP with a knuckle on metal.

I ended up taking my older Marvel aids in to the audi. She got on the phone with Phonak and was walked through transferring the entire program and settings from those aids into the new Lumity Life aids. That got me 95% to perfection! From there, a few more tweaks and a dedicated “Music” program, and I’ve been happy ever since.

Many people rave about REM and the tone test, word comprehension all that used to SET UP the aids. But the real test is when you put them on. How does your world sound? If it’s not to your liking, you have to shatter the accepted recommendations and articulate what you want boosted. For me, I traded off the sharp higher frequencies for more richness and bass. Personal preference, but it instantly turned my aids from tools that made speech comprehension impossible into ones that made speech EASY to comprehend.

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#22

After reading this thread, im curious… Are you still going to the same audi? Has this been the same audi for 5 aid failures?

#23

If you don’t mind sharing, what exactly was your reaction? Was it obvious or something you gradually figured out? My audi did suggest at one time, trying hypoallergenic material.

Yes, one was shaved down too!

#24

Yes and no.

  1. I’ve seen a few that rejected me outright after seeing my audiogram between telling me I’m crazy and laughing that I wanted to try aid. Current was a bit perplexed at first but was open and confident we could figure something out.
  2. All of these have one main Audi but I’ve consulted with others. I did think my Audi was incompetent after the first couple times but after consulting others, I realize that my case is indeed difficult, I may have a few extra out of the ordinary things going on, and my Audi has actually been right. Even now with my latest Aid, it’s like, wow, we were on the right track to begin with but got too scared because of the severity of my side effects, which is understandable since I basically ended up in emergency situation.
#25

Happy to share! And yes, every time I tried wearing ANY kind of custom mold (back in the day) or tip on receiver that was made of acrylic - clear OR pinkish hypoallergenic - or even the newer softer/firm silicone custom mold I had the same reaction. It came on FAST with acrylic molds: within about 8 hrs I had a combination of itching and burning. By the very next day, ears were swollen and RED as a lobster!

With the silicone custom tips (I had them briefly on these Lumity Life aids to begin with) my ears felt kind of itchy, less of a burning sensation. I could tell they were swollen a bit cuz it took WORK to get the custom molds inside my ear canal in the mornings. After about 10 days, I gave up, went back to the soft, double dome power domes and had the settings adjusted to compensate for that looser fit.

I get a bit of feedback if I hold my hands tight over my ears, but no annoying leakage otherwise, so I’m sticking with the smoke topaz colored soft domes for now. And EVER so grateful they are working out for me.

When my hard, flesh-colored plastic earmolds were shaved down too much, the audi slathered them in clear NAIL POLISH - I kid you not. That’s what caused otitis the first time for me. Bad.

#26

Some soft the UV acrylic finishes across the industry are essentially the same as some types of acrylic finishes used on nails. Usually ours have more certification and are priced accordingly.

#27

Oh LORD! No wonder they cause my ears to flare up! One of my audis used to cake clear nail polish right on the flesh colored custom molds back in the day. He’d have shaved the shape down too much, and had to then build it up to stop the feedback.

Now I get it. I had high hopes for the softer silicone custom molds I got with my Lumity Life aids. I even thought maybe that would protect the receivers if they got dunked in water - due to the tighter fit. But I couldn’t wear them past maybe 10 days - too painful.

Thanks for the insight! :slight_smile:

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#28

What are you word recognition scores? And at what decibel level is the WR at? Also, how is your bone conductivity readings compared to your hearing?

#29

Wow, you’ve had a tough time, sorry to hear that, and thank you for sharing; I really appreciate it! After reading your experience, I’ve been wearing my aid a bit, battery out, just to double check since I do have sensitive skin especially when you mix in sweat. I actually have to return my new glasses because I have a reaction; there’s a giant discolored circle back behind my ear.

#30

I only have bone conduction loss.

Word recognition isn’t a problem. I mean, it is but those tests aren’t designed for people like me so it doesn’t pick it up.

#31

So, surgery or implant isn’t an option?

#32

I found out about my loss ~10yrs ago. Went in for something completely unrelated; they told me it was otosclerosis (perfect timing for onset), to wait a couple years until it got worse, and then surgery. I did not remember my tests were consistently out in elementary school nor all the “strange” difficulties I’ve had throughout my life.

My most recent visit, my hearing has not changes and piecing together my history, I was told it’s closer to exploratory surgery and that I’d have to special request because I don’t meet the threshold. I read congenital issues don’t have as much benefit with surgery. Risk vs benefit doesn’t seem worth it. No one has brought up implant but maybe same thing.

#33

Ah, makes sense to RIDE THIS OUT! If I had your audiogram, I’d be 7 yrs old again and blissfully unaware of ANY hearing issue, LOL. Mine is inherited sensorineural. Bummer it had to drop like a stone, decade after decade to now. If I live to be 127 either I’ll be asking the cinderblock next to me what’s just been said, or … maybe hearing devices will improve to the extent that NO ONE knows I have a prob!

Unless you find your “loss” (call it what you will) affects work or home life, I’d sure do nothing about it for now. :slightly_smiling_face:

#34

Have a look at Bone Anchored Hearing Aids. They are suitable for conductive losses.

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#35

If I never got tested, I could have continued my life thinking I must just be weird. It definitely affects my life, but most of it, is not in ways normal people think of hearing loss (i.e. speech).

I am also particularly worried about the info about dementia since my left ear seemingly doesn’t even work - if I cover my left ear, it makes absolutely no difference. I used to think this was just because I’m right dominant; now I know this is not normal.

#36

Are they for mild losses? I’ve had bone conduction headphones before; they were extremely loud (filled up my whole head) even when very low volume. This was 10 years ago or so, so may be it was poor tech.

#37

Im baffled. My right ear loss makes my ear on that side seem “dead”. Cant imagine why you feel yours is dead with such a low level of loss. Have you had an MRI to find out what going on in your inner ear?

#38

Has your loss improved?

Seems odd that you’re finding things so loud even tho your loss is extremely mild anyway.

Before Chemo took my hearing, I had more conductive loss and some SN loss.

I could not hear out of BC headphones at all. Even on full volume.

With a conductive loss, you actually get 1/2 gain unlike a SN loss where you only get 1/3 gain.

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#39

I think rather than the amount of loss, it’s the difference between the ears? The one person, an ENT, who outright told me to try hearing aid, referenced this, as well as the fact that I’m a musician. while others just see mild loss. I could imagine that it may also have to do with the fact this has been life long so also how my body/brain developed?

With an aid in my Left, when I cover my left ear, there is a difference.

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#40

Maybe perception of hearing things for the first time in my life?

I actually started noticing things when I started learning the violin as an adult. I have to use cushioning or I get bone conduction and it’s unbearable!

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