Chiari Online Support Group

Hi everyone, I’m Lora

My name is Lora, I’m from Ontario! I’m in my early 20s, trying to start my own life. I try to do as much as I can, I’m very happy to have found this group. I got my official in January 2019. I had been having the symptoms since I was 7 or 8 years old with my family doctor completely ignoring me. He decided that I had fibromyalgia and that was the cause of everything past, present, future. Until 2019 I had believed it. Until my new family doctor discovered that he found the Chiari malformation in 2012 and didn’t tell me or my parents (I was under 18). I continued with my horrible pain and symptoms and playing contact sports. Not knowing that I had a lot more serious issues then I knew.

Welcome to the group Lora. I am in Canada as well. I went through the Canadian healthcare system for both diagnosis and surgery. It is not an easy road for anyone. I hope that you may glean much information here and find out where you can seek advice in your own area as well.

Where abouts in Canada? I’m meeting my neurosurgeon this coming week. All the doctors, other then my neurologist, I have found have seemed to fake knowing what it is. Like more agreeing with my understanding of the condition.