Acoustic Neuroma (AN) and Autoimmune Inner Ear Disease (AIED)

Hi everyone, I'm new here.

My tinnitus started around 20 years ago along with sudden hearing loss in my right ear. The MRI with contrast that was ordered showed an acoustic neuroma which has doubled in size since but is still considered small. I'm on watch and wait with annual MRIs. After a couple of years I lost all hearing on that side.

Last June I experienced sudden hearing loss in my left ear. My tinnitus which sounded like cicadas or spring peepers changed in that I still heard those sounds but now I also experience tinnitus that roars like a jet engine or standing in front of a water fall.

I was put on oral steroids and also received a dozen intratympanic steroid injections and was on a diuretic for about a month. I've been up and down on the oral steroid with the last pulse being 60 mg a day for 30 days than 40 mg for 30 days and currently on 30 mg a day. My ENT thinks my hearing is steroid dependent and sent me to rheumatology for a consult so I am also taking 20 mg of methotrexate once a week. I believe they think I have AIED.

My hearing has been mostly stable for about 7 weeks now although I am deaf in one ear and lost about 30 percent in the other. Yesterday my hearing dropped out for about 3 hours. I could still hear sounds but they were distorted to the degree where I was only getting about 20 percent of words spoken by someone close enough to touch.

I have a follow up with my ENT later today and one with rheumatology next week.

Thanks for listening.

 

Hey @shackle.

Being on such a high dosage of steroids surely isn’t a long term solution. I hope your appointment with the Rheumatologist went well, and that your hearing has continued to be stable.

Wishing you the very best.