Anyone have Neurofibromatosis?

[cgarr]

Started out with ringing or buzzing in my right ear and hearing loss, went in and had a mri done which showed what we thought a small tumor growing at the auditory nerve at the brain stem. We are watching the growth right now but this buzzing is starting to really drive me nuts! Background noise doesn’t even help anymore. About ready to get the ice pic out.


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[wdfifteen]

I don't know anything about it. A tumor? Crap.

[JavaBrewer]

My hearing loss started about 15 years after marriage...apparently HAHA.

On a more serious note I now have constant ringing in my ears but have not been exposed to loud noise. I have been riding a (MC) with ear plugs the last year so no real wind noise to speak of. As I type this reply my ear ringing exceeds the fan of the PU driving the workstation I am on. Just getting old I guess.

[gsxrken]

Craig, sorry to hear that but it sounds like you’re on top of it. Figure out a plan and work it, just like anything else. Don’t be afraid to travel to the right specialists, even if that involves an airplane. The more you learn about it the better you can participate in the decision making.

[NY65912]

Almost a year ago I awoke one morning with no hearing in my right ear.
SSHL Sudden Sensorineural Hearing Loss
This comes with a loud hum, buzz, hissing and sometimes siren noise. In the beginning it was driving me crazy. The docs said after about a year or so your brain kind of gets used to it. It's always in the background and honestly not mush helps. It get worse when I am stressed.

I had a few MRIs and there is no tumor but the hair cells are pretty much gone.

The sound that you hear is your brain filling in the missing frequencies that you can no longer hear.

The best method I have found is to try to relax and not pay attention to it. I have accepted that this noise will always be there and it is MY background noise.

I'm going to an excellent audiologist for a hearing aid that hopefully helps with the tinnitus.

That type of tumor is very slow growing and sometimes stops growing altogether. Sometimes forgoing surgery is best as the surgery has it's risks. I have a good friend who had what you describe Craig. He had the surgery and still has all the problems that he had before.

Good Luck