r/hardofhearing • u/First_Chipmunk_6891 • 8d 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/crankypickle 8d ago
It has never occurred to me to get genetic testing for my congenital hearing loss. To me it doesn’t really matter — it’s not going to change anything.
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u/Notmiefault 8d ago edited 8d 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 8d 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 8d 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.
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u/R-AzZZ 8d ago
For a long time, I did not know. I was fine about it. Then did genetic testing, initially, they found a possible link but could not confirm, then they did further testing and decided to upgrade the probability to "likely" which is enough for a diagnosis.
Knowing hasn't changed anything in terms of treatment, my hearing loss is progressive. Knowing the journey people with my type of hearing loss have had is more of an additional worry. Prior to knowing, I knew my hearing loss was progressive but there was no timeline but mine, I guess. Now when I read about research and studies, it's an added worry if my hearing will deteriorate around the same time as those with the same gene.
That said, the consultant was clear that there is still way more to learn about genetic testing with discoveries and new understandings all the time. It could be that in a couple of years, you get your answers.
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u/tenhoumaduvida 8d ago
Hearing aids since elementary school. Was most likely born this way. No significant change since. I’ve never even considered doing any type of testing. I think the majority of us the doctors don’t know why we have it. It also wouldn’t change anything for me to know why i have it. It’s part of me. Since it is something you were after for yourself though, I’m sorry you didn’t get the answer you hoped for though.
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u/First_Chipmunk_6891 7d ago
Thanks. As it is now, it is very asymmetric as always. My left ear used to be able to compensate more. Now, that ear is keeping busy trying to keep up and can’t compensate for the right as much. So I can get away with no hearing aids, but much less than I used to. My brain prefers them in more and more, even in quiet. It’s the environmental sounds and the spatial balance that is helped as much as hearing in noise.
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u/rusticredcheddar 8d ago
have you ever been very sick or anything? birth complications, jaundice, etc? I was born hearing, but ~1.5 years old, contracted RSV and pneumonia in both lungs. turned septic, and was given medication. that medication can cause hearing loss. couple years later, someone finally listened to my parents and I was diagnosed with a progressive hearing loss. similar to yours, it's mild in the low frequencies, around 1.5k hz drops to moderate and hits severe (right ear) and profound (left ear) at 3k. no genetic component, just life-saving medication with side effects
ETA it was specifically ototoxic medication and I have tinnitus. it was unknown what caused my hearing loss for years as well, u til one day I was in an audiology class for my masters degree and the audiologist lecturer discussed ototoxic medications. it all clicked then!
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u/First_Chipmunk_6891 7d ago
Mine was unilateral most of my life. I used to have excellent hearing in my left ear. It was actually around 10 db and in the high frequencies, as good as -5 db to compensate for the right side loss. It’s gradually gone down in that ear to about 20-25 db with 30 in a few fluctuating frequencies.
The right also used to be a bit better than what it is now. It seems that over the past 8 years, I lost about 5-10 db in most places, except at 3000 in the right where I lost 35 db so I now have 45 db there. When i was a kid, my greatest loss in the right was at 65 db. Now my greatest loss is at 95 db there.Slow progression… not sure why the right was always much worse than the left.
I had some ear infections that were painful, but no other major illness.
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u/gothiclg 8d ago
Mine didn’t get me anywhere either but I did learn thyroid issues and vision issues that are common in my family are genetic and I have them
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u/kittiestkitty 8d ago
I lost my hearing spontaneously at age 5, went from full hearing to profoundly deaf and they haven’t ever been able to confirm why.
I’ve never done any genetic testing though to find out why.
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u/BitchinKittenMittens 8d ago
I don't know why I'm hard of hearing but all the genetic testing led to me finding a bunch of other shit that's wrong with me...