Help new to Arnold Chiari malformation 1
 

Hello everyone, my name is Tara. I have had really painful pressure in my head for years, but within the past year its cotton worse. Now the pressure occurs many times a day whenever I strain in any way ( coughing , sneezing, laughing ect.) The pressure is now accompanied by numbness and tingling in my fingers , legs, feet. There are a few more symptoms that have started within this year. I went to my doctor and after a lot of tests, and many appointments, I found out that I have Arnold- Chiari Malformation 1. At least I know what it is... but I am just wondering if anyone out here has it, or knows someone with it.? I have searched the internet and have found some answers but I'd rather hear from someone who knows firsthand. I'm 27 yrs old, and will see the surgeon soon. Anyone out there that feels like talking/sharing? Thanks, Tara :(

Hey Tara, I also am a Chiari Patient, diagnosed in 2003: Decompression in 2004:
I was relatively symptom free for about 3 yrs but pain and other symptoms are slowly returning to pre-surgical intensity. My best advice is to try all available options before choosing surgery, as it is a MAJOR surgery, which is not a cure all but a treatment to relieve symptoms. Also put together a superstar team of drs who are your biggest fans!

When my boyfriend got diagnosed we felt just as lost.. what helped us is support groups like this & also www.chiariassociation.org they have answered SO many questions & have been so kind & helpful! They have a lot of good advice & know a lot about chiari! I hope this helped:)

Tara see that you are in Iowa . Dr Menenez is top chiari dr in Iowa .