One-sided Deafness, Autoimmune, and Next Steps

Earlier this year I wrote about having another Meniers attack, a sickening vertigo episode that left me suddenly completely deaf in my left ear. It’s been quite a journey in the months since. My Meniers diagnosis was changed to Autoimmune Inner Ear Disease (AIED), which is what is being blamed for my sudden deafness.

I already knew I had Sjogren’s, a different autoimmune disease that I was diagnosed with at the beginning of 2020. So AIED was number two, and quickly became my middlechild of diesease when I was also diagnosed with Rheumatoid Arthritis (RA) a few weeks after getting the AIED diagnosis. I’ll write more about my RA in another blog post, but for now, I want to talk about my ears.

After losing hearing in my left ear, I went through months of high dose oral steroids and even steroid injections directly into my ear. It became apparent that I wasn’t going to get my hearing back. Unfortunately, I was told I would likely also lose my right-side hearing at some point. After about three months of treatment, my ENT said I was notgoing to be a candidate for a hearing aid so he enrolled me into the Cochlear implant program at Oregon Health and Science University (OHSU). This is an intensive program of appointments, some lasting more than two hours long. Surgery, for the implant, was expected to take place by the end of summer.

Trying to adjust to one-sided hearing has been far from easy. Deafness is not always silent. I have raging, mindbending tinnitus 24-hours a day. For me, there is no such thing as silence, ever. Everyone is sick of me asking them to repeat themselves. It is frustrating, I get it. I have zero direction to sound. It’s very disorienting. Also, because of the related vestibular issues, I am always dizzy and easily go into vertigo just by tipping my head back, or turning my head to the right. Trying to listen to anyone, I need to turn my head to face them, and it has taken a toll on my neck and back.

During this time I went to see a chiropractor. My neck was killing me from constantly turning and straining to hear. After the cervical adjustment, my husband and I got in the car to head home. He said something and I realized that I was feeling a vibration deep inside my left ear. Then I realized I wasn’t just feeling him talk, I was actually hearing him, albeit softly. I was stunned. He was stunned. We went home and tried music and television. Some voices I could hear and understand, others just sounded distorted and static, like a badly broken speaker. Although what I could hear sounded miles away, it was an improvement ad definitely something to get excited about.

Every day I feared my ear would revert back, but week after week I was able to sustain that faint sound of hope. Was it the chiropractic adjustment, or did the new medication my rheumatologist put me on decide to work at that exact moment? I have no idea, but audiology finally decided to retest me. This time, it was quite a strenuous session lasting about 2 hours and included fitting me with a temporary hearing aid for some of the testing. The end result was that I had indeed gained a tiny notch of at least two different frequencies. The audiologist and the ENT were just as surprised as I was. No one knows if the improvement will last, but this slight change was enough to qualify me for a hearing aid versus a Cochlear implant.

My new hearing aid will arrive in a few weeks. Thankfully, my health insurance will cover most of the cost. Mine is on the lower tier of price and it is still $2500. If, after 30 days, it isn’t working out for me, or if I lose the bit of hearing I’d regained, then we will be back in the Cochlear program and we will get refunded for our out of pocket cost of the hearing aid.

Deafness isn’t exactly something I’d planned for. I never even considered it would ever happen to me. I mean, I figured I’d have age related hearing loss issues down the road, but not a sudden and or complete loss this soon. Now, I just appreciate every sound I do hear and try to imprint the good stuff, like the sound of my grandchildren giggling, in my mind, while I can.