ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: SGBlons on January 20, 2012, 07:18:57 pm
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As of today I am waiting and watching, with my first follow up scheduled for June. I have useful hearing in my AN ear, and was heading toward a hearing aid until this thing showed up. I'm trying to decide if it still makes sense to go ahead and be fitted with a hearing aid. I have no idea how quickly my hearing might deteriorate, but meanwhile I'm thinking, why not hear as well as I can?
What have the rest of you done?
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Although not in exactly the same situation as you are, after my first AN surgery I retained 20% of very useful hearing (100% speech discrimination) in my AN ear. My neurosurgeon and ENT both felt I would benefit greatly from a hearing aid so I paid over $2,500 for a MicroTech7 hearing aid. I had some improvement with it, but the device itself was very uncomfortable and I went back to the audiologist multiple times trying to tweak it for better hearing. Long story why, but I switched audiologists who felt this device was just not the right one for me. She talked me into getting a Widex Mind hearing aid (for an additional almost $3,000). What a difference!! I could hear so much better and it was a tremendous boon to conversation in small groups.
Unfortunately, I fell into that very small percentage of people who experience regrowth of my tumor. All of the doctors I consulted who reviewed my MRIs and audiograms, agreed that I would lose the remainder of my hearing no matter what I did ..... nothing, radiation, or surgery.
All of the above is to say, that some of your decision depends upon how much money you are willing to pay for improved hearing in the short term. As you know, ANs typically are very slow growing ..... but the direction it is expanding is what determines how quickly it affects your hearing. I guess I would ask my doctor how close to the cochlea the AN is now, which would also have a bearing on length of time. I am not a doctor, so I would certainly ask my doctor(s) their opinion before I spent $3,000 on a hearing aid. To my knowledge, it is a rare insurance company who will pay anything on a hearing aid because it is not considered a medical necessity.
Finally, although I spent waaaaaaay too much money for two hearing aids, the three years I wore a hearing aid certainly improved my mental health.
Best thoughts.
Clarice
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I agree with what Claice has said but would like to add my thoughts on this. Since you are in W &W it really will depend on wha type of treatment you may want. If you think you might want CK then I would think the hearing aid would be a good idea. On the other hand if you think you might choose surgery, there is a higher percentage of hearing loss.
I decided on CK and where hearing aids on both side. They help my hearing a lot. And if I should lose more hearing they can be turned up. But as everything they have their limits.
TJ
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I'm in W&W also and have worn a hearing aid for about 2 1/2 - 3 years BEFORE being diagnosed with an AN. What caused the diagnosis was that my word comprehension dropped off suddenly and dramatically. All that said, I have a Phonak hearing aid that I paid $1650 for and it seems to do the job quite well for now. After reading Clarice's post I told my husband I guess I'm going to need to upgrade from a Chevy to a Mercedes in a year or two. Long story short, I have found that the hearing aid helps when in large groups or we're out in public; I don't wear it at home.
Karen
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Unfortunately for me, my hearing in my AN side is very distorted and out of frequency. Kinda like an AM radio out of tune. Amplifying it just makes the "out of tune" louder distortion. Plus, I have hyperacusis ( a sensitivity/pain to noise and higher frequency). I tried a Starkey hearing aid in my AN ear with a little boost to help with distinguishing directional sounds. But, it increased my hyperacusis effects. My hearing in my left (non AN ear) is at approximately 80% (if you can actually assign a % to it). I use a hearing aid in my non AN side to be at 100% there and help compensate for the loss on the AN side. My goal is to use a hearing aid in my AN ear after all settles down from my CK treatment. Hopefully the tinnitus and hypercusis will be lesser and allow me to have a boost in sound.
Your situation depends on how the amplification helps your situation. At least it may help distinguish where the sounds are coming from when someone calls out your name and such.
Best wishes,
Bob
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Bob are you having anything medically done for the hyperacusis? Do you know is there anything that can be done for that? I've noticed these past two weeks my ear really hurts with loud & high pitched noises. Was thinking of going back to audiologist but when I complained about recruitment she said there's really nothing that can be done for it so I was assuming this is the same.
Karen
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SG
Just my 2 cents... I would proceed with a hearing aid. Unless there's a total, sudden loss, hearing will probably be around quite a while. I'm NF-2, deaf left, and 85% loss right ( down 95 dB. most frequencies of pure tone ) but still benefit from a hearing aid.
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Thanks, everyone, for your posts. I understand that it's a crap shoot, since no one can predict how my hearing will change over time. My plan is to go back to my audiologist and try to find an aid that helps but doesn't cost a ton. While this ear still works, it would be nice to hear as well as I can.