This is something I've been wanting to know more about, but there's not as much info on disequilibrium around vestibular schwannomas in terms of side effects as there are with hearing loss or facial paralysis - perhaps because it's more subjective and harder to mathematically measure and quantify? For myself, this was the primary reason my was discovered. Medical records going back three years for me cite my mentioning dizziness/lightheadedness, etc at drs visits. Def not stress, for there's not much that works me up. Kept having bloodwork done and they never found anything, I don't drink or smoke, and I did the usual of limiting caffeine, monitoring hydration, sleep, etc. Even was sent to see cardiologists (EKGs, heart ultrasounds, etc) because it was thought that maybe the issue was circulatory. No issues there. Couldn't find the culprit until I postulated whether I could have an undiagnosed concussion, since I get hit or kicked in the head frequently as an occasional consequence of my recreational lifestyle and that requested MRI found the VS.
Visits to the neuro-otologist and neurosurgeon all center around weighing hearing loss and facial muscle complications when discussing treatment. And I get that, for hearing loss is what brings the vast majority of VS patients to them. I want to consider the treatment that would have the greater odds of reducing my disequilibrium state to what it was five years ago, before I started going to the doctor over the sensation of what feels like walking on the bow of a small boat that's being rocked by ocean waves, despite no visual input to complement this full body feeling.
I have no answers - only to convey that you're not alone in this quest, though from what I too have been able to glean from digging around in the ANA forum, I think we are in the minority, for it seems like for most, overwhelming disequilibrium is not the most predominant side effect pre-surgery for most
