Chiari Online Support Group

Research on Ben's Friends Communities


Welcome researchers : feel free to browse, search and read as much as you wish here.

Members (patients, family members, immediate caregivers) : please do not post surveys or attempt to use our community for any kind of research purpose. Doing so will result in the immediate suspension of your membership.

For more information about research at Ben’s Friends, please contact tj1[at] .

made this a banner . It will appear at the top of every page until it is dismissed by the user. #2

My son Peter has Chiari, Syrinx, Ehlers Danon, and Scoliosis. His Scoliosis was at a 75 degree curve, Cerebral tonsils 14 in Jan 2019. He has been under going treatment for Scoliosis with Bracing and a traction chair.

We had Peter reassed at the end of April. The the Scoliosis out of brace is at 65 degrees with other curves decreasing approx 20 degrees. Peter’s cerebral tonsils have decrease to 10. We are seeing a reduction in the syrinx. It is not an easy road but Peter is my hero and will continue to improve each day through his hard work.

removed this banner . It will no longer appear at the top of every page. #4