Hi there, I have suffered from HFS for about 9 years. In Nov 2007 I underwent MVD and the spasms did slow right down, even to the point that I could go a whole week without one, although not disappear altogether. However, they have come back with a vengeance over the last 2 months. It is as if the surgery never happened. At the time, I was told by my surgeon that he would not perform a second MVD so it looks as if I am stuck for life with this. I too tend to use it as an icebreaker when meeting people for the first time and they usually sympathise as everyone at some time has had a tic in their eye which they find annoying. They wonder how I can put up with it but, as you know, we have no choice. I also suffer from bad headaches, usually when I have a particularly bad spasm, and I find that when I lie down and close my eyes at night that they can get worse. Anybody else had this?
I notice that nobody has used this website for a while but I hope maybe someone will read this and know they are not alone. I think the problem is that we have a rare condition that not even doctors know anything about let alone the general public which makes it harder to discuss.