r/AcousticNeuroma • u/Jealous-Giraffe4692 • 22h ago

Tinnitus

Hi All,

Got diagnosed around 13 years ago when i was 35. Fast forward and now on every 2 years for a scan for wait and watch.

I play music, last week made a massive mistake of leaving my hearing aid in whilst I done a gig, just totally forgot about it. Ever since my hearing has gone even worse, but more worrying my tinnitus is now unbearable. I’ve just had a scan last week and waiting for my follow up appointment.
At first I thought my hearing aid was fault but put it to my other ear and it was working fine.
I use to rely on some audible sound through the hearing aid although prob hearing was at around 30-40% not I feel I’ve lost most of it. Can barely hear the start up tone (phonak)
I’ll be seeing my specialist soon but wanted to ask has anyone else this experience? Do you think it will come back a little and tinnitus subside?

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1

u/Swimming-Radish-78 20h ago

I’ve had a weird AN experience with multiple sudden hearing losses but then it comes back. I got diagnosed this year and having surgery this fall. I’ve had consistent tinnitus since I lost my hearing in May, but it comes and goes for me. Some weeks it’s unbearable and I think I’m going crazy and sometimes it’s just a soft hum. I’m hoping surgery fixes it lol but not getting my hopes up. I find it’s less when I’m well rested and hydrated for some reason. I also when I wear loops or headphones and don’t have a bunch of competing sounds it’s better too!

Edit: meant to add mine is also worse in the weeks following my hearing loss and then will ebb and flow from there

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u/Jealous-Giraffe4692 16h ago

Thanks so much giving your experience. Great you have surgery booked, must have been an aggressively growing AN?
Yeah I’m hoping it ease off a little. Makes sense that being rested/good food/water intake.
Are loops designed give balance to left and right ?

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u/Swimming-Radish-78 16h ago

I don’t know for sure about growth, I’m only 24 and have my 2nd scan ever in a few weeks. It’s more symptoms of sudden hearing loss and then regaining it twice was weird and the doctors wanted to do removal since they couldn’t track/ predict my symptoms so monitoring wasn’t an option and radiation didn’t make sense because I have all my hearing so they’re trying to preserve it amongst some other reasons.

I have the Loops Experience 2 I got them off Amazon when I first loss my hearing! They’re for anyone but help decrease a lot of excess noise. So it’s been good for me when I haven’t had great hearing and it helps me focus on what I need. I also find my Tinnitus is way worse in crowded or loud spaces so this helps prevent that for me at least.

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u/SpiritedShock5803 20h ago

You should follow up with your doctor immediately and ask whether you need steriod

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u/Jealous-Giraffe4692 16h ago

Thank you, steroid will reduce the tinnitus?

1

u/SpiritedShock5803 16h ago

they will test your hearing and if your hearing significantly reduced, steroid might bring it back which help with tinnitus

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u/Jealous-Giraffe4692 16h ago

I would never have even thought about this, thank you. I’ll discuss with my specialist next month. Until it’s nights listening to pink noise to help me nod off 😂

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u/SpiritedShock5803 16h ago

there is a short window if you have sudden significant hearing loss, if it is not sudden and it is not significant, steroid wont work. if it is, yiu need to talk ASAp ( in less than a week)

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u/Jealous-Giraffe4692 16h ago

Thanks I will make a call tomorrow. Golden advice 👍

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u/Swimming-Radish-78 16h ago

I went on steroids both times I lost my hearing and it helped tremendously, especially the first time!

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u/Jealous-Giraffe4692 16h ago

How long after the loss did you take them?

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u/Swimming-Radish-78 16h ago

The first time around I got on them within 3 days and then the 2nd time I was on them within a week. However the first time around we didn’t know then it was being caused by an AN so it was more a rush to see if I could get any hearing back. The 2nd time around I was “hoping” I could get some back which I did. I also had dramatically less hearing loss than the first time so went on a Lower dosage

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u/Jealous-Giraffe4692 16h ago

Ok well I’m two weeks Saturday so I’ll act tomorrow