Hi Matt,
I'm only 4 months out, but working full time and rode my bike 2 miles (first time) day before yesterday. AND have some opinions about what helped...
I am 62 and generally healthy but not especially active, except for some international folkdancing, living in an apartment 3 flights up, etc.
After the surgery (trans-lab: zero hearing or balance from left ear now), I was in the hospital 14 days with a CSF leak (and a second surgery to patch it). Once out, I began walking about 5-10 miles a week--not a lot, but a little more than my previous average. I walked in the hospital, too--the long hall was maybe about a block. Less, during the days they were draining CSF every 2 hours.
At 4 1/2 weeks after surgery (2 1/2 weeks out of the hospital), I returned to folkdancing. I did about a dozen dances that night--and EVERYTHING was better the next day.
This was the most major turning point I've experienced. I think what made the difference is that I was doing something for which I had a quite precise mental "map"--each specific dance, its styling, plus really REALLY trying to dance ON the beat (rather than near the beat).
Also, before surgery, I had sometimes (in a simple dance, in a line holding hands of dancers on either side) experimented with dancing with my eyes shut for a minute or two at a time. (It gives a quite different experience of the body moving.) I was uncertain if I would EVER be able to do this again--but I began to be able to, a few weeks ago! I take this as a sign my brain is truly adapting to the single-sided vestibular signal rather than learning to substitute another sense, or at least not vision.
Maybe proprioception alone could carry this? but I don't think so.
I also did vestibular rehab once a week for several weeks. It didn't seem like it was much help, but of course it's difficult to tell. My therapists had low expectations: when I asked about getting down on the floor and back up again, they wanted to show me how to grab furniture to pull myself up (and I was already way past that). Early on, I began to devise my own rehab exercises. Example: that old exercise we called "windmills" (stand with arms out, twist to touch hand to opposite toe, return to arms out; reverse). If an action made my head swim, it had rehab potential. The trick is to find a way to do it that triggers the reaction but is (1) safe, and (2) doesn't trigger it so much you stop or won't do it again.
One really great thing they did is put me on a treadmill with handholds, first or second session. The little bit of balance those handholds gave me let me walk at a normal speed again, carrying my own weight. It was a revelation--and what helped me decide to attempt so early a return to dancing (slight balance help from dancers on either side). There's a principle here: if a little help of some kind lets you do something almost normally, whole systems of movement may kick in.
I've now quit vestibular rehab, but continued folkdancing (and added a second night a week), and am 3 weeks into learning Aikido (total newbie for any martial art). And beginning to bike a little.
About the Aikido: I went there asking if they could teach me to fall safely. (I hadn't fallen since the surgery, but if I keep getting older and living in the icy north I expect I will, now and then.) On the first night, they taught me to fall over backwards from a stand (on mats), roll on my back with head tucked, use my momentum to rock up into kneeling, then stand. (I was amazed!) Balance is a theme that runs through the entire discipline, so I will be there a few months, then we'll see.
Also: I'm beginning to realize that it is possible to be aware BOTH of a "junk" balance signal AND a good one in the same moment. I thought the "junk" signal might disappear from my awareness as my brain adapted--and, it might. Or, things may continue as they are, with both the usable orientation and the "junk" signal both in awareness. As a long-time meditator, my path through AN has been eased by simply accepting the signals that are coming in. Full-on vertigo is incapacitating, but at some degree, some wobbliness can be accepted as simply an unpleasant thing that is here.
SO: my tentative take-aways.
- Early activity helps. It may not need to be a lot, but needs to focus on what's hard and/or what triggers that unpleasant off-balance sensation.
- Having a precise "target" helps a lot. Could be an old activity that was learned well. Could be something new--with enough coaching to really aim at a precise result.
- Moving "normally," even if it takes some special help, is important.
- The "junk" balance signal, at least sometimes and when it is mild, can just be allowed to be the way it is, rather than making it a distraction.
So: that's my two cents.
