Originally Posted by chiarithree

Hi there, I'm new, and I really feel for you. Most Chiari docs will tell you that it takes about an average of 5 years for most of us to get a proper diagnosis. Unfortunately most docs right now don't have that much knoweldge of this dissorder, but they are learning. And we as patients have to help them, I have epxerienced "missed diagnosis" from Fibromyalgia to anxiety dissorder. I myself was diangosed with "panic attacks" and anxiety simply because I told them I had a burning pain in the back of my head and neck and shoulders. I have had the headaches all my life. I knew that wasn't right and went on to get a second opinion, who agreed with the first opinion, I still felt something just wasn't right so I chose a teaching college and got an appointment with a wonderful neurologist who decided to rescan my head and add an MRI of the neck, the neck wasn't done before this. Well, indeed it ended up being Chiari 1, a 7mm herniation and because they did run the neck MRI they also found the syrinx at c6-c7 and degenerative disc disease from c4-c7. He told me many of my vary unusual symptoms were probably due to Chiari and Syrinx and definitely not "anxiety" he told me that too many physicians take those and diagnose them because it's an easy all too common answer for most. I have had the pain, numbness, tingling, chronic muscle twitching etc. I also have autoimmune disease on top of it and Familial Essential Tremmor. He sent me to his NS and we discussed it, my case, etc. and are taking a watchful wait and rescans every 6-12 months but have elected not to have surgery at this time since I'm a pretty complex case with the autoimmune stuff in there too. But had I not listened to my gut instincts I would never have known this. The first neurologist had done the brain, but told me that my symptoms could not be from chiari, that there was just no way, that it just doesn't cause that. She also never told me that my pituitary was flattened from increased pressure (or born with it) on the MRI, it was the third Neuro that saw it and told me about it from the previous scan. Since this we have also discovered my daughter who is in her teens, having some strange symptoms very similar to mine, and my mother also have this Chiari 1 condition. Best wishes to you and your journey, pray all goes well, hope this helps, please if you feel something isn't right, then pursue it until you feel comfortable with it, you just never know.