Here are some other Chiari blogs that I have discovered, listed in no particular order:
Living with Arnold Chiari Malformation Type 1 ( ACM 1) Adrianne's blog is a personal journal that really captures how it feels to live with Chiari. I encourage you to start at the beginning of her blog and follow it through. As I am posting this, she is wrestling with the decision on whether or not to have surgery. My heart is with her!
My Big Brain Blog: Life with Chiari and Tethered Cord Here you'll find a fascinatingjournal of Leslie Witty's experiences with Chiari and related disorders since her diagnoses in 2007. She hopes to raise awareness and help others find answers with her blog. Leslie has a wonderful sense of humor... don't miss her entry about the gift she made for the TCI surgeons: "Songs to Accompany Brain Surgery." (Sept. 11, 2007)
Too Much Brain to Contain This blog is a personal journal plus an amazing collection of links to info on Chiari, Tethered Cord, EDS, POTS and Thoracic Outlet Syndrome. Be sure to read the post from March 22, 2008. It is a letter to people without chronic pain followed by tips on dealing with people who have chronic pain. This blogger also loves to crochet and provides free caps for anyone facing brain surgery. Please contact her if you are in need of a cap, or would like to help out.
Carolyn's Chiari Twenty-four year old Carolyn bravely chronicles her life with a chronic illness and pain... "Being a bionic woman with titanium rods in my skull and screws in my spine..." She had decompression surgery in 2002, a fusion in 2003 and just had her spinal cord de -tethered this June.
Spinal Cords Gone Wild AJ writes, "This blog is a place for me to vent, share, and discuss the struggles (there's no joy) in living with a rare, degenerative spinal cord disease called Syringomyelia." You will also find research on chronic pain and a collection of papers on tethered cord.
Live Love Laugh This is an amazing blog that you could get caught up in for days! The author, Lacie, makes each post detailing her day-to-day life even more interesting by adding links, song lyrics, photos or funny videos.
Lifes a Journey Sixteen year old Sarah was really optimistic before her decompression surgery but is having a very difficult recovery. She writes: "I hope that even though my struggle seems like a lot of me right now (which it is), if anyone else with Chiari is reading this then disregard what I'm saying because you can absolutely do it, even if you have your down moments and thoughts like I do. Right now I just wish I had someone to relate to, someone who's been through this all before."
Droopy Brains Be sure to read the passionate rantings of a woman "hellbent on acquiring research monies and awareness for Arnold Chiari Malformation and Syringomyelia" which she and all three of her children have been diagnosed with.
Y Laurie Another beautiful blog about a mother and her young sons who have been diagnosed with Chiari and EDS. Laurie designs and sells Chiari awareness bracelets and necklaces to help raise money for her medical bills.
Chiari and Syringomyelia in Canada The author begins by saying she is a very private person who took a long time to decide whether or not to blog. She writes, "...what finally swayed me is the abyss in Canada when it comes to knowledge and support for those dealing with these disorders... I hope that I can be part of the beginning of better days for Canadians with these issues..." (You don't have to live in Canada to benefit from this blog - there's lots of good information for everyone.)
AZ Syringo (SM) & Chiari (CM) Support Group This Arizona based support group hopes you will find our their blog useful, not only for disseminating information, but as a way of staying in touch and being connected in a supportive way. They welcome pictures, videos, or any type of articles you would like to share to make their site more informative. Be sure to read Shawna Countryman's June 14 th entry: "Coping with Syringomyelia & Chiari"
Sheila's Chiari and SM Journey Sheila is a mother and grandmother who's blog is a wonderful mix of journaling, helpful information and just plain fun stuff. She writes, "My second wish, after a cure, is that someday I can turn to a neighbor, new friend, or even a medical professional and when I say I have Chiari the answer will not be 'Chiari, what is that?'"
My Life with Chiari Malformation Type 1 On her blog, Jenn Ann generously shares all the details of her successful decompression surgery by Dr. John Oro. She writes, "He gave me an amazing gift and if sharing my experience can help even one person, I'll feel that I've paid that gift forward."
Am I Sick or Am I Crazy? Twenty-two year old Courtney started her blog in the summer of 2006 as sort of a "headache diary." She was eventually diagnosed with Chiari in June 2008 and had decompression surgery in August.
Chiari Endoscopic Decompression Lori suffered for ten years before having Endoscopic Decompression surgery for her Chiari Malformation in June, 2008. I had never heard about this kind of decompression surgery before! According to Lori, it is much less invasive and left her with only a 2cm scar on her neck. "I left the hospital less than 24 hours later. Easy Cheesy!"
UnZipped UnZipped was started by a woman named Queli who wanted a place to "ask questions, get answers, and share experiences. " You are encouraged to join in by submitting your own posts. Queli, who has had 6 surgeries, offers excellent advice on how to prepare for surgery and just what to expect.
Chiari Girl This blog is an honest and hearfelt journal about a woman's recent experience with decompression surgery in the United Kingdom.
Chiari Times Chiari Times was started by Dr. John Oro and is an excellent resource for information. It is designed primarily for healthcare professionals to increase awareness and understanding of the Chiari malformations, syringomyelia, and associated disorders. The Blog section contains news, opinion, recent site updates and more. The Archive lists blog entries by date and the Categories page lists them by category. The References section provides links to abstracts and articles organized to facilitate study and research in specific areas.