← Return to Anyone out there with Autoimmune inner ear disease (AIED)?

Discussion

Anyone out there with Autoimmune inner ear disease (AIED)?

Autoimmune Diseases | Last Active: 4 days ago | Replies (194)
Comment receiving replies
@beckyseattle

I now have 2 CIs. Got the first one 15 years ago, the second just last year. Hearing aids before that. I guess that I’m now completely deaf without all the gear.
I never had vertigo, but I sure had/have crummy balance. Physical therapy helps enormously. Apparently your body can get balance info from eyes and muscles, not just from the hair cells that AIED wipes out in your ear. I’ll never be a gymnast on a balance beam, but I can muddle along in a mostly upright position. My only gripe about PT is that my insurance thinks it’s a luxury I don’t need.

Jump to this post

Replies to "I now have 2 CIs. Got the first one 15 years ago, the second just last..."
tinae | @tinae | Jul 2, 2023

Hi Becky, I’m wondering if you could give me a little bit of insight into the CI’s and how you adjusted to them. If you recall, I was diagnosed last July with AIED I like you have been on prednisone methotrexate, and the latest is Humira. I am currently on all three waiting for the Humira to kick in and then be weaned off the others. I was down to 20 mg of prednisone and left ear failed drastically in the last three days so I’m back up to 40 mg but the left is not coming back so more than likely I’m gonna be totally deaf in the left year. As long as the right stays stable I probably won’t do anything until down the road. Maybe I’m not sure but I’m sure that CI’s are in my future. Just curious how bad the surgery was for you the recovery time and how you’ve adjusted to hearing with those.
If you don’t mind sharing, I would appreciate it. Thank you, Tina.

VIEW AND REPLY