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Anyone out there with Autoimmune inner ear disease (AIED)?
Autoimmune Diseases | Last Active: Oct 31 6:20am | Replies (228)Comment receiving replies
It’s my understanding that it’s a magnetic device that sticks to the side of your head or behind your ear. Is that uncomfortable or super noticeable? I’m not that vain but just curious. I’m surprised to hear the surgery was so minor that’s great to know what about normal life and doing things is it weird if you take that piece off at night then you can’t hear anything more than likely. I’ll end up like you with my left ear, having to have a CI in my right ear as long as it stays stable for now, continuing to use the hearing aid which as of right now I don’t really need. I am on all three medication‘s, which I agree with you is horrible between the weight gain in the moon face and the mood swings in there , I don’t even know what else always being tired. It’s a bizarre situation. I’m sure like you when you were diagnosed. Unbelievable never thought in my wildest dreams. I’d be going deaf. So as of right now, do you hear normally and you can speak normally talk on the phone function?
Replies to "It’s my understanding that it’s a magnetic device that sticks to the side of your head..."
Well, first the easy one. The magnet, at least as far as I experience it, is roughly disc shaped and about the size of a half-dollar. It sits flat against your skull, behind and a little above your ear,
The processor is the same shape as a BTE aid, and rests in the same location as a BTE. It has a thin wire that attached to the to of it, kind of at the 2 o’clock position ( if your earlobe is 6). Athe the other end of this wire is a (yes! You guessed it) a circle of metal with a little disc magnet in it. You put the magnet from the processor on top of the magnet next to your skull and they stick to each other firmly. The external magnet is dime sized and sits in a circlet about the size of a quarter, so you don’t have to be super precise.
I was grateful for the remaining hearing aid while I had it. The CI got precision hearing down very well, for speech, and the hearing aid got everything else, like music and the vocal tone of emotion. It’s kind of nice being able to contrast what the two devices do differently, I think it made adjustments easier for me. CI sound is not natural, and it helped me to develop a respectful regard for what it does do. It’s pretty wonderful to be able to understand speech, even if you have to give up some things.
Over time, I think your brain fills in the gaps. My understanding now, after 15 years, is so much richer than it was. Hearing is more than speech recognition, but I had to learn to just keep on going while all the magic happened outside of my control. Us humans, we like to be in charge.
Oops, just realized I didn’t answer your final question. I think I do hear and speak “normally” now, and except for a couple weeks at the very beginning, always did. That said, my family tells me that my voice sounded robotic for the first year or so, then gradually returned to ordinary.
I have read recently that my experience is probably similar to others who don’t have much “deaf time” before they get an implant. Apparently people who wait a lengthy time have less successful outcomes . Need to keep that brain thinking about sound processing, even if pickleball is more fun.
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Humira is a biologic it’s supposedly the big guns supposed to go right to the problem you got to take it for 2 to 3 months to see if it works at this point I don’t think it is nor is the methotrexate and the prednisone as you know, it’s got to go.
Also, did you ever or do you have Tinnitus? Just curious if it continued with the CI’s or if you’ve never had it. Right now mine is pretty severe in the left ear almost and tolerable.