Hi Don, thank you so much for your kind reply and for sharing your experience. I am very sorry about your hearing loss.
Rear-left-side headaches and dizziness (significantly impacting my sleep) were what led to my first MRI earlier in 2021 (it was done w/o contrast, so the AN was not initially found). I kept pestering my PCP (and a different neurologist) to re-order another MRI and "please look again", at which time they ordered it w/ contrast and then of course discovered the AN. It was initially reported by radiologist as "most likely acoustic neuroma, less likely meningioma", but the ENT Surgeon/Neurotologist confirmed it as AN.
However, due to some other test findings along the way (such as my borderline Chiari I Malformation, which is also rare) as well as some neck/disc issues), I'm not really sure how much the AN is contributing directly to my symptoms. It's been complicated. I've been checking into a few other angles for the headaches/dizziness/nausea and may need additional tests like a cerebral angiogram to rule out vascular concerns and possibly a myelogram to rule out a cerebrospinal fluid (CSF) leak, before I would make any big decisions about treatment options for the AN. Currently working with PCP, Neurologist, and Neurosurgeon on this. I do have an appointment to discuss the AN 6-month Brain MRI follow-up with the ENT Surgeon/Neurotologist on July 11 (It had gotten delayed because I was focusing on those other angles for a bit.) so I hope to learn more then. Will keep you posted.
What was your tinnitus like? Every once in a very long while, I'll hear a low, loud ringing sound that just pops up out of nowhere and lasts for a few seconds before going away, but I have gotten that in both my ears my entire life, although rarely. However, now, when all is very quiet, I think I might be noticing a super-super-high-pitched *buzz*-type sound in my left ear (which is possibly there all the time, but just barely noticeable in my day-to-day living at this point). If that is tinnitus, it hasn't affected my overall hearing (at least not yet). Also, was your fluid/pressure feeling located behind your eardrum? I don't have that (yet), mine has been located behind my outer ear, right on (and below) the left mastoid bone. That's the focal point for my dizziness and nausea, but again not sure how much of that is actually from the AN. I have not experienced the burning tongue you mentioned.
Thanks again Don, and please let us know things go with your follow-up as well!