ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: sarahwadsworth on September 29, 2015, 09:06:21 pm
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Over the last few months I have read so much on sudden hearing loss and acoustic neuroma that my head is spinning. :o
I have read that most individuals with AN have gradual hearing loss. I however had sudden hearing loss that is progressively getting worse since onset in July.
I am 39 years old and was diagnosed with a 11 x 5 x 4 mm AN through an MRI last week. My mother had hearing loss in both of her ears. She as well as doctors had always attributed her hearing loss to head trauma (caused by being a victim of domestic abuse). My mothers sister also has hearing loss in one ear and doctors attributed her hearing loss to a stroke she had when she was quite young.
What is the likelihood that my hearing will return, and is it common for the loss to be sudden and get worse quickly?
What is the likelihood that my mothers hearing loss was NF2 and that I have inherited this gene (my MRI shows only one AN)?
I appreciate any help that members can give while I wait for my referral to go through from my ENT.
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Hi sarahwadsworth and welcome to this forum .....
While no one wants to hear the diagnosis of an acoustic neuroma, you have come to a good place for support and caring.
I hope while you are waiting for your referral, you will send for the free ANA materials. See: https://www.anausa.org/contact-us These materials contain a wealth of accurate information. Also, if you have not already done so, check out all of the resources on the ANA page. (anausa.org)
Regarding hearing loss with an AN, there is a huge variety of symptoms/scenarios with AN patients. In my case, I experienced sudden hearing loss. I woke up one morning feeling like I had been up in an airplane or high altitude in one ear only. My usual tricks to clear it did nothing so I finally went to an ENT and as they say "the rest is history."
As for your hearing returning, while possible, it most likely will not. Sometimes following treatment, there is swelling that can temporarily cause additional hearing loss.
Usually bilateral hearing loss is not an indicator of ANs. Only an MRI (best with contrast) or CT (less accurate) scan can determine whether there is an AN. Very small ANs can be missed if an MRI with contrast is not done.
As for NF2, typically genetic testing is not done unless a patient has more than one AN or additional tumors on the spine.
Hope that helps. Many thoughts and prayers.
Clarice
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Hi Sarah,
My hearing loss was sudden as well. I only lost about 10% of my hearing - but I woke up one day and completely noticed that my hearing had diminished and I suddenly had tinnitus. I was only 27 so I knew it couldn't be aging (like most people attribute their hearing loss to). Luckily I went to the ENT immediately and was diagnosed with my AN quickly. I had my tumor removed 4 months after I was diagnosed so luckily my hearing never got worse after the initial drop. I was so scared that it might get worse though, which is why I made my decision so quickly.
Sadly, based on my conversations with multiple neurogsurgeons, once your hearing is lost, it is unlikely it will return. I believe you get tested for NF2 through bloodwork. With your family history, I would probably suggest this to your ENT and try to get tested. Good luck!
~Michelle
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I had quite significant sudden hearing loss which then got progressively worse over the next two months.
I decided to have Cyberknife two months after the sudden hearing loss..
I lost more hearing after CK in the first month to the point where it was pretty useless, but gradually my hearing returned to normal..
I have had around 4 bouts of major hearing loss since 3 times I took Steroids, Once I didnt...
Each time my hearing did come back but worse...
5 Years after CK and it has been 2 years since my last episode of sudden hearing loss.
My hearing is better than it was pre CK. I got 4.5 Years of good hearing... however just recently I have started wearing a hearing aid to help with the high frequencies.. Works great in noisy environments to help understand people.
So yes your hearing can come back.. but it doesn't happen for everyone.
There is some research to indicate radiation sooner may assist in hearing retention.
If it means anything I currently have -20db loss @ 250Hz, -20db loss @ 500Hz, -30db Loss @ 1KHz, -50db @2KHz -50 @4KHz
Essentially I have hearing of a 75 year old in my bad ear but I am 51...
think I have done pretty well
NF2... Is often diagnosed before the age of 30.. and is potentially disabling...
So unless your mother had early hearing loss in both ears and the problems started early its very unlikely to be NF2
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I take my above statement back then! I was just speaking from my personal experience... but everyone's AN journey is completely different.
Paul - so great that your hearing is now better than before your treatment!
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There are lots of people on watch and wait, who have fluctuations in hearing.
When I did lose my hearing it was quite sudden. Significant loss of hearing within 6-12 hours.
Typically some would start to return after 3-4 days.. About 50% would be back after 10 days, and I would get more back over the next 6 months.
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I lost my hearing gradually, but when it was gone, bam, it was gone. It went from probably 25% to zero in a flash. I remember the minute it happen. I was in a bar in Tokyo listening to a really bad Karaoke singer when in mid verse, bazinga, no more annoying squealing on the left side. That was in 1996. November I think?
Take Care!
Doc
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There are lots of people on watch and wait, who have fluctuations in hearing.
When I did lose my hearing it was quite sudden. Significant loss of hearing within 6-12 hours.
Typically some would start to return after 3-4 days.. About 50% would be back after 10 days, and I would get more back over the next 6 months.
I am WW and have had fluctuations in my hearing. It has generally been "good enough" with the major loss showing at high and low frequencies and not being noticed by me at all. What prompted my seeking a diagnoses was a sudden, almost total loss of hearing in my AN ear. The hearing test backed up what I knew, that my ear was basically turned "off". About two weeks later, it went back to the "normal" good enough status that it had probably been for years and it has stayed that way, as verified by hearing tests.
According to my Dr, my ABR test indicates that my hearing will in almost all certainly be lost no matter what I do. Therefore, for me, I am riding it out as long as I can since treatment will probably kill my hearing as soon as I get treated.