Hi all I have been diagnosed with acm type 1 since 1999 i have been decompressed in 1999 and in 2002 I have done much research into chiari and I have a double syrinx in my spinal canal for the added fun after my first surgery was fine for 3 years then symptoms started a slow come back and by oct 2002 i was in JHU hospital having the 2nd decompression done and now my symptoms are barely stable what helps is i have a lot of great support with and around me and i do not ley others dictate how i feel and what i do if they where in my body then hey it would be a different story also i have a good dr who amazingly knew what chiari is and gives me referals to the right people my one problem is i cannot get an mri done because i shunt on lower spine and because i do not know the type no one in Pa will give me one and anne arrundel hospital in Maryland won't fax my dr the paper stating the type of shunt so i have to do the legwork so to speak.so just hanging in there as best i cam for now will post again soon if anyone needs to talk about things or needfs help contact me be glad to help if i can ok i am for now