Greetings, and welcome to the forum! I also had CK 7 months ago, and am experiencing significant balance/disequilibrium issues.
For the "whole" story, you can click on my name next to this post, and then click to review all my previous posts. In this way, you can follow my "journey" over the past 7 months. I'll give you a general overview, and then I'll PM you.
Had CK in March. Rocky recovery - blood pressure problems ever since, which have required meds. I generally felt terrible for a few weeks, probably more steroids than CK. I had hearing problems before CK, and this has remained stable (been tested twice since). Was feeling almost normal by May, but by the end of the month had developed some vaguely shadowy vision problems. Did a round of doctor appointments related to vision, with no real help. June MRI showed no change in tumor. Dizziness, floatiness, then straight-up balance problems started in late June, and progressed until present. I think I've stabilized over the past month at this level. Vestibular testing in September showed I've lost about half the balance function on AN side. I liken this to a wire in your headphones shorting out on and off. Neuro-otologist says that, since the function on right AN side fluctuates, the "good" side has trouble compensating. He says this can take days, months, or even a couple years to resolve. I also have some nystagmus, or problems with the coordination of my vision, related to vestibular/balance difficulties.
I have some degree of dizziness and that floaty feeling constantly, from the time I get up to the tijme I go to bed. I have some moments which are just short of outright vertigo. I wasn't too concerned about these problems at first, but as they have persisted for nearly four months, I've also gone through some emotional stages as well (frustration, depression, acceptance, better coping now). I still have concerns about how all this could ultimately affect my job, but no real problems currently. I'm very, very active - triathlete, distance runner, etc. so I'm surprised I haven't shook this off by now. I'm going on an extended vacation for the next couple weeks, but if I don't improve, I'm going to make another round of doctor visits and insist on some help.
Please, please keep us posted regarding your progress. We need to stick together, so maybe we can all figure out what best helps with these "side effects" when they last a little longer than expected!
