Wow
that really sucks
I guess mine is very mild when compared to yours. I'm concerned about the long term effects of surgery, but I'm also concerned about symptoms progressing. I guess we are all stuck with bad options either way.
Sorry to not provide any guidance as I'm all new to this ordeal; perhaps you can find a NS that can help you - everybody sings the praises of dr rosner in NC for instance, as he's very dedicated to quality of life.