I too have Syringomyelia and a Chiari Malformation. It is kinda scary too. Mine is very large (from the basically the base of my skull to the bottom of my shoulder blades). I have been having symptoms since I was 12 and they figured out my malformation when I was 19. I had surgery for my Chiari Malformation a year ago last month.

My symptoms are better. I haven't been in to see my neurologist since I was cleared to go back to work and such, because we currently have no insurance. However, I had a spinal scan done tonight, actually, and it shows that my spine has curved from my neck to the bottom of my shoulder blades, which syringomyelia might cause.

I'm the queen of head injuries, so that has probably not helped. There are a lot of things I think I really need to quit...like, heading soccer balls and playing softball (major triggers of my symptoms before).

It's hard. A big life adjustment. Maybe I don't know enough about it to be scared of it yet, but it's not the end of the world. Could be worse, could be better...but this is how it is. The sooner I accepted it, the sooner I pretty much forgot about it.

Constantly, I am in pain...but I keep really busy, so I don't have time to think about it. My family is totally understanding and helpful. For the guy who started this post, tell your family. Let them love you through this. Let them help you. You aren't a burden. They will count it an honor, a joy, to walk this road with you. If you don't let them, it's just gonna hurt them more.

I do wanna say this...and if I'm breaking forum rules, sorry...this is my first time. But I serve a good God. He has given me trials that are huge for someone who is only 21. But He's still a good God. He does not stand back and watch idly as I wander blindly through life, hitting all of these walls and hardships. He is walking with me, His hand in mine. And I know FULLY that if God wanted to heal my syringomyelia right now, He could. For some reason, He doesn't want to, but that doesn't mean He isn't in control. It doesn't mean He isn't with me. And it doesn't mean He doesn't care. He just has other, far greater plans.

Ya'll, this is some tough stuff. Not gonna lie. I'm one of those "I need facts" kind of people. If it's wrong with me, I wanna know more than the doctor does about it. I got attacked by a dog at 18 and he ripped open my face pretty bad and the first thing i wanted was to see it. Sometimes the "facts" scare me. Until I remember that God is bigger than the boogie man...and He's bigger than anything I go through.

This may sound crazy weird but if anyone needs to talk or vent or what-not, shoot me an email. I don't give churchy answers. And I actually GET IT...because I'm there too.