Hey, Cherie.

It's actually hard to say how common ACM/SM is. Many people have it for years and years and don't even know it because they never have symptoms, or their symptoms are mild and vague, so they never get dx'ed. My son was actually one of the weird situations where an MRI was done on him to check for anything that might have contributed to his autism (especially since his head blew up like a balloon during his infancy), and although I was immensely relieved to find out he didn't have hydrocephalus (which I have had all my life--nearly 40 years), you can probably imagine what it felt like to hear about the ACM! (He does not have SM.) He doesn't seem to have any serious symptoms, so after a complete eval at TCI in NY 2 years ago, we were told to get another MRI at some point (in "a few years"), and essentially not to worry much about it. So far, so good...except that I really wonder how it ties in with his autism (and I'm sure it does; I have run into a lot of parents online whose kids have both Chiari and autism), but thus far, no one seems to want to address it. I have very mixed emotions about the idea of the surgery. After all, it is brain surgery, and it's more complicated than a shunt, which is all I'm really acquainted with, but what if it could really help him?? I don't expect it to "cure" him, but I do know many parents whose kids had decompression, and their symptoms improved dramatically. As well as he's doing, I would really welcome that.

So...you have MS? I'm sorry. I have heard some amazing stories about patients who said they presented with symptoms that were believed to be from MS and it turned out to be ACM/SM. I don't really understand how they're connected, but it's quite interesting. How are you getting along? How is your sister doing?

I'm headin' to bed shortly (gotta get up at 6 am to throw kids out the door ), but I hope we can keep gettin' to know each other.

Have a great night!

LIZARD