ANA Discussion Forum
General Category => AN Issues => Topic started by: Willbur on October 27, 2016, 08:18:55 pm
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Since the days of my diagnosis I've noticed an increase in Tinnitus attacks on my left side. I've called my doc a few times that insist that many patients experience this. We've discussed the possibility of NF2, however he said that there is no AN on my left side, thus most likely I don't have it. Should I be concerned or should I listen to his advice?
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I don't know what to tell you. There is no cure for tinnitus. It's just something we all have to live with and get used to the best we can.
Tinnitus is often unrelated to ANs so if you don't have a second AN showing up on your MRI then it was just bad luck that you got it.
I've had tinnitus in my left ear since about 2002 in the form a tire eternally deflating.
Tinnitus in my right ear (AN side) started with the hearing loss in the AN ear.
The tinnitus in my left ear never changes but the tinnitus in my right ear changes the sounds periodically. You can read more about that in my odyssey at the link below.
At any rate, the tinnitus in both ears is minimal volume and easily ignored.
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I don't know what to tell you. There is no cure for tinnitus. It's just something we all have to live with and get used to the best we can.
Tinnitus is often unrelated to ANs so if you don't have a second AN showing up on your MRI then it was just bad luck that you got it.
I've had tinnitus in my left ear since about 2002 in the form a tire eternally deflating.
Tinnitus in my right ear (AN side) started with the hearing loss in the AN ear.
The tinnitus in my left ear never changes but the tinnitus in my right ear changes the sounds periodically. You can read more about that in my odyssey at the link below.
At any rate, the tinnitus in both ears is minimal volume and easily ignored.
Glad to know I'm not alone. Both the surgeons suggested I shouldn't seek out or spend the money to get testing for NF2 as they said in their experience it does have to be bilateral and the chances of one growing on the opposite side are slim to none. I guess it is just the paranoia in me I suppose.
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I was told that I should get an NF2 test since they said I'm really young to have an acoustic neuroma. I have one next week.
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Willbur: Told too young to have an acoustic neuroma ? Mine was diagnosed @ 23 and I had symptoms since around 17. Do you have any of the other "symptoms" of NF2 ? Any family history ?
Kathleen
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Willbur: Told too young to have an acoustic neuroma ? Mine was diagnosed @ 23 and I had symptoms since around 17. Do you have any of the other "symptoms" of NF2 ? Any family history ?
Kathleen
No other symptoms. I did genetics testing and I am waiting for the results.
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I had genetic testing done and they said NF2 and other abnormalities haven't been found.
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I'm having a really bad tinnitus attack in my left ear again. Does anyone have any idea what might cause that?
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Hi Willbur, I find sound triggers my (mild) tinnitus. If I wake up during sleep, there's never any tinnitus. On the way to work, with the radio on, some days it starts.
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Do you experience it in the other ear though. I literally just woke up and had sensorial hearing loss in my left ear. I was tested for NF2 and it came back negative. I called my doc just now to see if I should go to ER. I have next MRI on the 18.
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Sorry Willbur, I didn't notice it was your non-AN ear. Never had it in the other ear. However, it would be interesting to hear if others find sound a trigger for tinnitus.
Good luck with your MRI in about a week. Your tumor is about the same size as mine.
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Sorry Willbur, I didn't notice it was your non-AN ear. Never had it in the other ear. However, it would be interesting to hear if others find sound a trigger for tinnitus.
Good luck with your MRI in about a week. Your tumor is about the same size as mine.
Others mention that it could be NF2 or Mosaic NF2.... Nothing came up on my scan a few months ago.