Friday, January 27, 2012

My best top 10 advice for fellow Chiarians!

1. Don`t give up hope.
2. Keep a journal every day. Write down everything you are experiencing.
3. Be honest about how you are feeling, don`t hold it in. It makes it so much harder to handle alone.
4. Don`t hold back the tears. I did for 3 years and am crying tons now. Cry when you need to. It is a lot to handle and NO one knows what you are going through unless they have Chiari too. Let it all out!
5. Join Chiari groups and talk to other fellow Chiarians. It helps a lot to know you are not alone.
6. Don`t over do it. Lay down and rest when you need to. Our bodies are not able to do much as others.
7. Find a doctor who believes you and realize up front that having the Chiari surgery does not cure you and you might have other issues and need other surgeries.
8. Get a second opinion or even a third.
9. Know that your symptoms are real and you are not crazy.
10. When you feel good, get out and do stuff, because tomorrow you may not be able too. (I regret not doing certain stuff so much)

I promise it will get better eventually. We will always ride the roller coaster of Chiari, but we will never be alone. Don't give up hope. Keep fighting and spreading awarness. Please do not hesitate to ask me anything you are unsure about. If  I don't know the answer I will help you find it. :)

Much love and best wishes,


  1. I am SO impressed with your maturity and writing. I wish our college students were as mature and expressive as you are. I can only try to imagine the daily struggles you face. I admire your courage and stamina. It's great that you are helping fellow Chiarians. I do hope your roller coaster ride with Chiari at least slows down a bit so you can enjoy the little things of daily life the rest of us take for granted. Take care.

  2. Thank you! I have always enjoyed writing!

  3. I love your blog!
    I was 15 when I was diagnosed with CM & SM. I had my decompression the same year.
    I really like this post!!

    1. Thank you! I was also 15 but only diagnosed wih Chiari at that time. It took three years and MANY doctors for them to find the rest. :)