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Anyone out there with Autoimmune inner ear disease (AIED)?
Autoimmune Diseases | Last Active: 5 days ago | Replies (217)Comment receiving replies
I want to add something positive. I do understand how traumatic it is to think you're becoming deaf. I totally get that. But I really want to tell you, don't be afraid of cochlear implants. They're spectacularly good on speech recognition, especially if you get them soon after losing your hearing. Not trying to say that they're a miracle, or perfect. But when your speech recognition is down to 40%, you're not getting much out of any conversation. An implant can probably get you up in the 80% range very quickly. They come with Bluetooth and telecoils built in, so you can hear really well on the phone, stream movies and podcasts, and use a mini-mic connection to hear audio from your computer. A cochlear implant can be a great help.
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Hi Becky, thought I would just give you an update. I’m trying my last effort at three consecutive prednisone shots in my left ear. I need to stay on all the meds for now to keep the right ear stable but I do have an appointment set up for a cochlear implant evaluation. Which, as you know you have to qualify for one, as of right now they don’t feel it would be an issue but the insurance company historically will deny it at least two times so I’m thinking by the end of the year. If the shots don’t miraculously cure the problem, which I don’t feel it’s going to, but I needed to at least make sure I did everything possible, I will be getting my first CI in my left ear. We will see what happens as I start to wean off the medicine. I may get the second one by the middle of next year but I’ve come to terms with it, could be worse, they are going to connect me with a few other people that have CI’s just to talk to it see how they feel, where they are. They try to set you up with some peers that have a similar situation as you, so hopefully that will be a positive experience. I will keep you posted. Thanks again for sharing your story.
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Thanks Becky, for sharing that I can tell you that I am struggling emotionally right now. Things seem to be going south very quickly here. My concern right now is the meds are not working, so I’m probably going to go off of the methotrexate and the Humira I’ve been on prednisone for nine months which you and I both know it’s got to go. How quickly is this going to turn? Am I going to be able to work and I’m going to to walk up, right? Will I get super dizzy and not be able to walk that’s kind of my struggle right now.