I have a Chiari 1 Malformation. So far though, I have not been officially diagnosed with Syringomyelia. As a result of having "crappy"(lack of a better word) doctors, I have had to do a lot of my own research and study my own films. I am not a doctor by any means, but I swear that I can see, plain as day, 2 syrinxes on my Flow Study films. One in my neck and the other in my Thorasic spine. One thing you might want to look into is the Chiari Institute website. They are the leaders in the world for Chiari research. Hope this helps. :)

My Chiari went undiagnosed for over 36 years, even though I had an MRI of the brain 4 years ago due to chronic headaches. Even with this new diagnosis, in the beginning, the neurosurgeons didn't think there was much herniation there, but my neurologist measured it at 6mm. Also, I read an article somewhere (I looked for the site but can't seem to find it now) that said that Chiari is not defined by the herniation but by the lack of space and CSF flow behind the Cerebellum.

I went undiagnoised with SM/CM for 37 years and had emergency Decompression Surgery in 2004. I have had headaches for 10 years and the doctors said they were hormonal and never did a MRI when they did it was almost too late. I had to have surgery the next day. I had never heard of this disease before and did not have time to do any research before my surgery. I do have Chiari 1 Malformation and syringomyelia. I was a lab tech. for 25 years before my surgery and now I cant work because of the Chronic pain, hands shaking, headaches, leg pain and I have eye problems. I have been denied SSI and Disability 4 times and my life has become very frustrating and I have had two stroke right after my decompression surgery and have no feel on my right side and weakness.I take alot of medication but I have never been completely pain-free.