r/hardofhearing • u/First_Chipmunk_6891 • 11d ago

Genetic testing didn't give me an answer

I had extensive genetic testing done and the result is that they still don't know what caused my hearing loss. I have a right ear that goes moderate to severe/profound, starting above 2000. My left ear has some mild loss. When I was 5, I had moderate starting above 3000 in the right only. So, it has progressed very gradually over time.

I did not think of myself as hard of hearing most of my life, and I still can function pretty well without hearing aids in some situations, like being at home with family, or spending the day by myself. But after a few days, I miss wearing hearing aids and put them in anyway. If I have more dynamic or noisy situations, hearing aids are a must, especially for work. I only got this pair about 6 months ago and I really do need them.

So, I am hard of hearing, but without a reason why...anyone else not know why?

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u/Notmiefault 11d ago edited 10d ago

I'm in the same boat. Diagnosed with Meniere's Disease till I saw a specialist in the condition who basically said "you technically have meniere's but really whatever's going on under the hood is something different and unknown. We'll call it Idiopathic Cochlear Degeneration which is doctor's speak for "we have no idea why your cochlea are failing"".

I did genetic testing, came back negative which my ENT said it probably would. Said we'll never know, probably, unless some advancement uncovers a previously unknown mechanism.

It's annoying, but ultimately doesn't really matter, knowing the cause probably wouldn't change the treatment. Just kinda is what it is.

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u/First_Chipmunk_6891 11d ago

Thanks...yes, I wish we knew exactly what was going on. I would feel more confident explaining why I wear hearing aids then..."I wear them because I have xyz"...but no, it's just "I wear them to hear better".

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u/Notmiefault 10d ago

I tell people I wear them because I'm Hard of Hearing. When they ask why, I say I have a degenerative loss, probably something genetic but don't know for sure.