Progression of Unique Audiogram

Hearing Loss
1

Here’s my progression from 2020-2023. I’m 35 yrs old and terrified to see what will happen in the future. My WRS was worse this year and that was without any background noise added. During the testing I kept hearing “say the word” and then my brain turns to mush. I had an mri in 2022 that came back clear and the opinion was it was a virus and just move on.

With a new ENT in 2023, she suspected autoimmune but the tests she requested show as normal, so the specialist she referred me to denied me an appt.

My mother does have a hyperparathyroid and was positive for a connective tissue panel. I’m still trying to get those tests done. We both have Raynaud’s and I also have a severe reaction to my hormones every cycle. I have an appt coming up where I’m requesting to have my levels tested when I normally get chills and night sweats.

Can someone explain to me what it might mean to have tympanometry results change from A to As? No one discussed that with me at my appt and I’m still waiting to hear back after taking the time to compare audiograms. My left ear is still A, but the peak has gone done a lot in that as well from last year.

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Is there anything in particular that makes a drop at 500, 2k and 8k? I’m grasping at straws, I’ve been to 3 ENTS and 4 audiologists and none of them have seen anything like mine.

ANSD was brought up but after the MRI, they never talked about it again. What is the likelihood that something didn’t show up and that is still a possibility? I did not get an ABR test done.

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2

Very interesting audiogram.

@Um_bongo or @Neville might know.

Can’t think who else is a professional.

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3

Very difficult to say what’s going on. Sensorineural losses of such variation aren’t easily measured: they could be dead spots that are being recorded by the overlap of adjacent frequencies

My guess would be some form Cochlear deformity or one ‘wedge’/section through the cochlear that has either ossified or lacks a blood supply/neural activity.

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Thank you for the suggestions! Should the potential issues with the cochlea show up on an mri or is there something else recommended for that? I tried to see if I could find it on my mri to compare to google examples but too confusing lol.

Edited to add I do have multiple forms of tinnitus and sometimes it seems to be pulsing with my heartbeat. Would that be a potential blood flow issue symptom?

5

No, this kind of detail isn’t visible. Your whole cochlear is only a few mm across. MRI don’t have that kind of resolution; plus it’s a bony structure anyway so you wouldn’t see internal defects, even if you could scan at that resolution.

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6

Thank you! I will bring this up and if I get any answers will update!

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7

WOW, that is indeed the most unusual audiogram I’ve ever seen as well. It’s like mountain peaks and valleys. Have you consulted with an endocrinologist if you have hormone issues (which may not even be related to the audiogram)? A dense article on ANSD sheds some light on the topic.

DO NOT PANIC about the word recognition score. Just know that is but ONE of many tests used to assess one’s total hearing challenge. How are you with normal conversations? Understanding speech in LOUD places? The range of your hearing doesn’t seem terrible to me (but, um, check out my snake-belly’s audiogram). Even so, at 35 I can see why you’d wonder about the DECADES to come.

I’m fascinated by the story here. Autoimmune runs in my family, but I’ve never heard about that affecting one’s hearing. Did you ever get tests as a child? Or was your first one in 2020?

Please keep us informed about any likely cause or solution.

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8

Thanks for the link, I will definitely read it! I’m curious after looking at your audiogram, what can you hear with and without hearing aids? That is definitely low!

I have not been to an endocrinologist, but I’m definitely going to try to get there. I’ve been so miserable I’m over it, it’s definitely progressed the last few years.

For conversation in my daily life, I can hear 4 out of 6 kids pretty well if we are in a quiet room. The other two talk quietly and are unable to raise their voice for some reason :roll_eyes: If we are driving in the car, the tv is on, water running, a fan, etc it’s not going to go well. A restaurant or large family functions are so bad, I’ve been avoiding them. It’s just a sea of voices and I get nothing from it. Phone calls are horrible unless I use my AirPods. I get listening fatigue pretty easily.

I think my main problem is that I hear some things VERY well and that takes over speech. Isolating myself probably isn’t helping, luckily I have kids to talk to. At their sporting events I just smile and wave at the other parents and go take videos.

I had no tests as a child, the first one was in 2020. My loss started before that, although I’m not sure when exactly. I never had issues hearing until I was in college and had already had a few kids.

9

No idea. If I were to take a guess, I’d say genetic progressive loss. ANSD seems unlikely to me given present OAEs at 35, but it’s a pretty quick test to run.

Treatment pathway seems like: Hearing aid trial (consider remote mic options for noise), cochlear implant eval if hearing aids do not benefit and/or there is progression of loss.

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10

Thank you for the suggestions! Curious for the genetic component, is there typically other family members that would have hearing loss? My dad has some from the military but his is the typical/normal. I have six siblings and none of them have any issues. Nothing with cousins or aunts/uncles.

I didn’t have much success last year with hearing aids in real life but when I could change things on my own when streaming I heard nearly perfectly. The audiologist couldn’t recreate that unfortunately, but I feel like I’m ready to try again so hoping now that my expectations are realistic it’ll go better.

11

OK. I’m just pondering , if YOU were able to “change things on your own” but audi couldn’t, I’d ask WHY out loud. I had a challenge getting my Phonak Lumity Life aids set up initially, but once my audi called Phonak Tech Support and they walked her through how to “copy and paste” the setup on my older Marvel aids to the new Lumity Lifes … well, I was about 95% to NIRVANA!

This Friday I will go in and have my audi play around with maximum power output (MPO) and gain, to see if I can juice a bit more performance out of my Life aids. It’s trial and error, but definitely DO NOT GIVE UP.

And never stop socializing. Get a new pair of aids to trial. As Neville suggests, deffinitely look into some kind of remote mic accessory. Not sure what your budget is, but my Phonak Lumity Life aids + Roger ON iN V2 mic stick really IS as good as it gets! :grinning:

Oh, without aids in? LOL! The first night I moved in to our current house, our “friendly” neighbor fired off a salvo of welcome M-80s at 11:30pm. He must’ve had a good belly laugh. While I barely heard them (I was in the shower) I sure as HE!! felt them in my sternum. So, we learn to adjust. I even say that I “hear” with my eyes! I use any sense I can to compensate for being hysterically DEAF when the aids come out at day’s end.

In fact, my hubs can only even attempt to get me to hear if he speaks SUPER loud in a VERY HIGH-pitched SQUEAK! Like some kind of cartoon character. We both always laugh out loud at that, but I might hear part of what he’s saying. Then he goes into air-writing mode. And sometimes that gets me all the way to comprehension as he spells out a message in the air with his finger.

When all else fails, he points to his ears and that means the AID gotta go back in. Ack. If there is reincarnation, I wouldn’t want this exact life. Just my dear hubs and PERFECT hearing. :rofl:

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12

I’ll have to ask my husband to talk differently :joy: it was very weird that I could hear certain people better without hearing aids than with. I would be like hang on let me take my hearing aids out so I can hear you lol.

The audiologist had recommended using LACE auditory training and I did it three times in total. I wrote down exactly what I struggled with, what words I couldn’t hear and what I changed on the equalizer but the changes she did made it so much worse. At the time I had a very crabby baby if she wasn’t being held and was stuck in the car for long periods because of school drop offs and pick ups/sports and the distortion with crying was unbearable :grimacing: The radio would sometimes help her be more happy but all I heard was chipmunk voices lol.

For streaming with LACE if I dropped low and mid -12db and increased high 6db for men’s voices it was amazing, didn’t have to think at all. I assumed it would be an easy change but nope.

13

Interesting! I’d never heard of LACE training until your post here! It does seem intriguing, and maybe like “working” the brain to boost speech comprehension.

I strongly believe that the brain + ear connection is like a muscle: it CAN be worked for improvement, but it takes commitment and CONFIDENCE.

Perhaps folks with perfect or near-perfect hearing can pass the LACE challenge without even trying? But for ME, I need VERY VERY good hearing aids plus the practice. It seems that I am not a very good lip reader, and I can say with confidence that NOT streaming human speech in any environment is going to spell difficulty, frustration and challenge for me.

But the Lumity Life aids have changed that equation noticeably. Even without streaming audio (phone, TV, music, etc.,) I feel that my ability to hear better has improved over the past year. It’s as if a 10% improvement in speech comprehension (which Phonak marketing touted) became more like 20%. Over the months of being able to actually hear a fraction better, BETTER, BETTER with my brain “muscle” workout, I’ve gained confidence in the outside world.

Now give me streamed audio - cell phone calls, streaming TV - and I’m up there with the best of 'em!! Rapid fire, accents, new information - if I can stream the audio, I’m getting probably 98% of what’s being said. I enjoyed excellent streaming even with my Marvels - so that’s not what’s changed in the past year.

It’s the new Lumity Life aids. These Phonaks seem to fill in the gaps with speech even NOT streaming - not 100% by any means, but by that critical fraction of a percent that lets me fill in the final smidge I’ve missed in most cases.

I’m now telling my husband what’s just been said - altho HE still has to tell me from time to time what I’ve missed. But as I lean in to the noticeable improvement in speech comprehension, I’ve gained a lot more confidence and actually enjoyed engaging with people I don’t know, socializing more, shootin’ the breeze even! If I’m not hearing someone in a loud place, I no longer feel embarassed, I just ask for a REPEAT, hunker down, and GET IT the 2nd time around. That’s what’s different and better about having the best aids I could find for my kind of loss.

You’ve got hills and dales of hearing, but I’m hoping there is a make or model or some kind of setup that could flatten it out across the board so you don’t have the gaps in speech at different frequencies.

Oh, and change the title of this thread to “Progression of Unique Audiogram” eh? :wink: Cuz that’s what it is.

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14

Oof, it depends on the genetics. Six siblings though, maybe not. Are you the youngest? Have they all had their hearing tested? Your parents could just both be carriers.

Finding the right settings for hearing aids may be an interesting challenge. Additionally–are you still in nursing? Something that fits under earphones for an amplified headset may need to be a consideration.

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15

Yes I am the youngest, there’s 20 yrs between me and my oldest brother. None of them have had their hearing tested but they also have had zero issues talking in any type of situation so I guess that’s likely why they haven’t.

I’m not, I bailed out of nursing school once I had issues hearing which really sucks because I did really well previous to that. Just had some clinicals left.

16

I will see if I can get a trial for them, someone else had suggested those as well. I’ve tried Oticon More 1s and Resound Omnia. I am definitely lacking confidence, I’m going to try audiobooks for a while and see if my brain wakes up some. If I don’t have to be tested on it maybe I’ll be more willing lol.

LACE was very interesting and I completely believed in it but my scores were a bit depressing. Some parts were a bit too long for my brain, they could definitely alter a few things but I had my favorite parts and stuff I dreaded. I’ll try it again when I get the next hearing aids.

I’m glad they are working for you! I hope that now that I know what to expect that it will go better next time thanks!!

17

Watching this thread.
Very different than anything I have seen on this forum.
From reading the posts I would lean towards getting a CI evaluation. You have pretty much already taken most of the tests.
The dead zones comment might be proved by pushing gains during audiogram. This is how it was proved with my hearing after years of missing it.
Tuff situation.
Good luck with this.

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18

LOL your comments about the LACE exercises is spot-on. I only poked around at the site a bit, but I can sure see how low scores can be discouraging - and NOT necessarily mimic real life! Don’t forget that we ALL lip read to some extent, and I think with the Phonak Lumity Life aids, that may be my final “bridge” to comprehending more than I did with the Marvels.

That said, even if I’m halfway up the stairs and hubs shoots a question or comment my way, if I immediately CONCENTRATE harder on what he’s saying (like, try to slow down the words coming at me) I do a lot better hearing and snapping something back! To which … sometimes … he says, “I can’t hear you down here!” LOL. :expressionless:

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19

Update so far…my CT scan for my ears came back completely normal. Nothing is showing why I’m having the issues I do. The CT scan for my sinuses shows some sinus disease. She can’t do anything more to help me this year as they are overbooked.

I went to a new dr and got a lot of labs drawn. I tested positive for the connective tissue panel. 1:80 and speckled pattern. Everything else came up normal besides being low on Vitamin D (16 ng/mL with the normal being 30-50). They did refer me to Rheumatology but that won’t happen til February. I feel like that might be a pointless appt because of everything else being negative.

It drives me nuts to have no answers!

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20

I know it’s unsatisfying, but while it’s worth ruling out things that might need other types of medical follow-up, there’s a strong chance that you will never know.

Are you set up for a hearing aid trial?

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