Sorry I didn't check this sooner!
Just a little update: I remember writing this original post thinking I would always have vertigo, and I'm sure there's someone reading this with the same fear. But I'm happy to say it got better! I no longer have any nystagmus, I don't feel like the world is tilting, I resumed driving on the highway 3-4 months post surgery, and and I even went stand-up paddle boarding (requires soo much balance, never thought I'd be able to do that again) over the summer! Unfortunately, I'm still dizzy, but mostly just when turning my head to my bad side and when I stand up too fast. But I don't think it has a major impact on my life whatsoever.
Shoop- I'm sure you've had therapy already, but for anyone else wondering, my balance and dizzy therapy went like this:
First my therapist advised me that I needed to improve my posture because having a balanced field of vision is important (I hope this makes sense). Try not to tilt your head to one side or up or down too much. I think this helped, but I had terrible posture to begin with.
The other main exercise I did went like this: I would tape a large capital letter E to a blank wall and sit in a chair about 4 feet away facing the wall. I would very slowly turn my head to each side (look to your left, then straight, then to your right) but kept my eyes on the letter E. Moving to my right side (my bad ear side) was really hard and would usually initiate nystagmus. She instructed me to just move even slower if it got too hard and stop if I needed to. I started out doing this 8-10 times each side 3-4 times a day and eventually increased to 20 times each side 3-4 times a day while standing (vs sitting).
Something that I really struggled with was driving or riding in a car. It was overwhelming because trees, cars, etc were moving too fast, so my therapist suggested I look straight ahead at the farthest thing in front of me and focus on that while in a car.
Sadly I was a bad patient and stopped going when I could function relatively normal again. I'm sure there are many more exercises but the E on the wall while turning my head really helped me the most. Also, my main problem was turning my head to my bad side, if your problem is different I'm not sure that exercise would be affective.
Steve-thanks for your reply, your recovery time sounds about the same as mine: 2 months before I was driving. Though I avoided the highway for longer because I couldn't quickly look over my right shoulder when changing lanes without getting dizzy.
Interesting that you mention your dizziness pre-surgery. I specifically remember being dizzy every morning when I first woke up for 3-4 years pre-diagnosis. I had just always assumed it was because I was still tired. I didn't even associate the two until my pre-op appt when my surgeon asked, "have you been experiencing any dizziness?".
Even now nearly 12 months later, I don't think I feel 'normal', especially when turning my head to my bad side, and closing my eyes like you mentioned. I'm hoping my balance will continue to improve like yours has