Thursday, November 25, 2010


First off...

Happy Thanksgiving!!

Onto research...
Here is what I've found on some recent research going on for CM/SM:
(I've only posted a few.)

The Duke Center for Human Genetics is actively recruiting families who have TWO OR MORE family members with Chiari type I malformations (CMI), with or without syringomyelia. These family members must be related to each other by blood, and BOTH must be willing to participate. Our work is centered on determining whether or not there is a genetic cause to the development of CMI. Hopefully in the future this will lead to better ways to diagnose and treat CMI.
Participation in the study involves:
1. Read and sign consent forms
2. Provide a blood sample from family members both with and without CMI
3. Family history telephone interview
4. Complete a medical history questionnaire
5. Review medical records and MRIs to confirm the diagnosis of CMI/S
For more information or to enroll in the study, please contact the study coordinator at 1-877-825-1694 or

(Taken from

Study by ASAP

Prospective Evaluation of Cognitive Function (Brain Fog) Among Individuals with or without Syringomyelia Before Decompression Surgery as Compared to Post Surgery

Purpose of the study: Patients with Chiari I Malformation often complain of cloudy thinking which can impair their productivity at work and their personal interactions. Improved understanding of these cognitive (thinking) problems in patients with Chiari I may lead to better treatment strategies. Research is required to answer these important questions: 1) Do cognitive (thinking) problems in patients with Chiari I Malformation result directly from the malformation or from another cause? 2) Do cognitive problems improve after surgery?
Researchers at Spalding Rehabilitation Hospital, Aurora, Colorado, have designed a prospective clinical research study of 50 patients with Chiari I malformation who are candidates for surgery. The intent of the research is to evaluate if Chiari I malformation affects cognitive function (normal thought processes). Dr. Cammy Chicota, a clinical neuropsychologist, is the Principal Investigator for this study. Standardized interviews and pen-and-paper tests will be used. Patients will be tested before and again 3 months after surgery to see if the surgical procedure resulted in any changes in these tests. A single neurosurgeon, a single type of surgical procedure, and a sole neuropsychologist will be involved, which makes it likely that any change after surgery will be related to the surgical procedure and not to other factors. An ASAP grant in the amount of $24,020 has been awarded to support this important clinical research study.

(Taken from More research posted there.

Enjoy your turkey!:)
Well that's all the time I have for now to look things up! I will post more when I have the chance!

Friday, November 12, 2010


I found this .pdf handbook on ASAP. It's 43 pages and has a lot of information on CM and SM.

A Handbook for Patients and Families


Another repost:
Living With Chiari


I'm hoping to have more time to post stuff. Eventually I'd like to post other Chiarians stories! If you would like to share your story on my blog, send me message on facebook!

Comments are appreciated! Suggestions for what you would like me to post about are welcome too:)