This is my first time on this site too. I was also diagnosed with a Chiari Malformation type 1 and syringomyelia. My syringomyelia is big...from the base of my skull to the bottom of my shoulder blades.

I have no idea as to whether it matters if the syrinx goes up or down or side to side. I just know it's not really ideal to have one. Let me say this to you, though, the military wouldn't take me because they found out I had this.

Also, I have had the surgery that you were talking about. It's not as scary as it seems. It hurts like heck, though and will put you down for a few days, depending on your pain tolerance. I don't know what kind of symptoms you have been having, but I had some pretty severe ones that the surgery really helped. They aren't GONE, but they are significantly better. Have the surgery done as soon as you can, because it will start helping that much faster.

Don't know about the kinky brain stem thing. Sorry your doctor doesn't have much compassion as far as his joke telling goes.

My doctor didn't give me restrictions except to be careful with blows to the head and neck. Other than that, I wasn't given any restrictions, so I don't know about that. Get a second opinion.

And there is no "cure". They can't exactly move your brain, so you're always going to have this. But they can relieve symptoms and ultimately help the issue. The surgery was great for me...I have an awesome scar and a better life since I had it done.

If you have other questions I might be able to answer, let me know.

Good luck and God bless.