Where do I go from here

I was diagnosed with Chiari Malformation roughly a week ago, and was told that I was going to need surgery. Other than that, the doctors up here don't seem to know really anything about this illness. They explained the basics, that it was a brain issue and such, but they couldn't really offer any insight as to what I have to look forward to now. This "ailment" has essentially turned my whole life upside down and nobody in this great state can really tell me anything about it.

I guess what I'm getting at is that I need information, first hand accounts and such, of what I can expect after the surgery. Everything I've read says the same basic thing: Surgery didn't work, still have headaches, etc, but that can't be the only thing that happens as a result of the surgery...