ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: chefcrsh on August 17, 2021, 07:01:21 pm
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Hi again,
So I’m on extended WW after discovering that the tumor wasn’t a VS but suspected Lipochoristoma. This kind of tumor is enmeshed in the nerve and there is no way to treat without severing the nerve. So no treatment unless hearing is totally lost and balance is becoming and issue. Good news is so far 2 years has seen no growth.
Anyway, I have a bit less than 79% hearing in the effected ear. The doctor would like me to consider a hearing aide. What I wondered is given the issue the aide will only be able to amplify sound, is it worth the very high price?
Those with hearing aide and partial loss please give your experience.
Thanks
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I am on W&W as well and got hearing aids about a month ago. They are terrific. Makes a huge difference. My neuroma side is moderate-severe loss and my other side is just mild.
I will push for Costco though if you are near one. The hearing aid market is somewhat of a racket (do some searches and you'll see). There really is no reason for them to be priced as they are. Both private and Costco employ Hearing Specialists. Some Costcos have Audiologists, not all. Mine doesn't, but I've been getting my hearing test through my ENT due to the fact that it's related to the neuroma and I just bring that. I didn't like the Kirkland brand (I tried several of them) and have the Philips 9030 right now. Trying the Jabra on Wed actually for a 2 week trial.
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That’s great that you’ve had no growth for two years! I don’t know how your lipochoristoma affects your ear as opposed to an acoustic neuroma. I have an acoustic neuroma and initially got hearing aids for both of my ears but didn’t wear mine on the acoustic neuroma side because that ear is also sensitive to loud sound. In important situations or ones where I really don’t want to miss anything I do use them in both ears. I love mine and really need them to be able to hear close to normally. I have the widex brand that go over the back of your ear and there’s a clear wire that goes into the canal but you really can’t see it at all. I would highly recommend them if you have trouble hearing in normal conversation settings. I also have a separate hearing problem though as well so I really need them. You can try them out in most places to see how you like them.
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Lipochoristoma effect is essentially the same as the schwanoma but where the Schwann ma is on the nerve sheath the lipochoristoma is in the nerve so inoperable.
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I had a Kirkland hearing aid last year (9.0) that did not seem to help and I returned after a couple months. Now I am reconsidering hearing aids since learning about a telecoil option that can possibly help me when speaking on a landline. I have about 80% WR and have been on W&W for 4 years. I am looking at a Phonak Paradise 70 rechargeable at the audiologist's office, which is in network with my insurance and will cover one. If I go back to Costco, I will actually pay more out of pocket. Their newest Kirkland is supposed to be the equivalent of the Paradise 90, but I haven't asked them about it.
Has anyone used the telecoil option?
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Ok so I went for it and got a Cros system from Phonak. Just had it a few days so far but it’s amazingly un intrusive and definitely helps with my 40% hearing side. I don’t even consciously notice the right side is being amplified in the left ear. Somehow the system and brain work out that it’s right side data.
I called Costco and they said they do not provide Cros systems, so I’m with my audiologist and the Phonak is certainly a Cadillac model pairing with my Bluetooth devices, and being rechargeable, but they are doin a good job and almost invisible to both look and feel. My only complaint so far is occasional wind noise on very gusty days.
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I got the Phonak Audeo P90CROS system post AN surgery and I’m very happy with that set up. Prior to surgery for 5 years I had a Phonak Audeo single hearing aid for my bad ear and I would recommend you get a hearing aid. I would describe it as “brightening” up the sound more than dramatically amplifying the sound. I was pleased with the performance of the single hearing aid prior to surgery.
I strongly agree with the advice here to go to Costco as long as you aren’t looking for a CROS system, which they do not offer. I suggest you get rechargeable vs battery operated. It’s really nice not to have to deal with batteries.
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Phonak is about to introduce an app for the CROS hearing aids that will allow you to change the volume levels on the fly from your phone, this will solve the wind noise issue you mention. The app was supposed to be ready in January, but it may be a little late.
In the meantime, you can adjust the volume by pressing the little button on top of the aid to reduce the volume when it’s windy. I experience that same issue by the way!