Navigating Chiari, syringomyelia and related disorders is hard, but you don’t need to do it alone.
Chiari Malformation & Syringomyelia Initiative is committed to providing current and accurate medical information to educate patients and their families. The Chiari Malformation & Syringomyelia Handbook is an excellent resource for patients and medical professionals. All educational material on this website is written and reviewed by our Scientific Education & Advisory Board Executive Committee before publication. This material is designed to help individuals understand the disorders and treatments in order to make knowledgeable decisions about their care. The information provided is designed to complement, not replace, the relationship between a patient and his or her physician and medical team.
If you have further questions, or you happen to think of some while doing your research, please feel free to contact us at any time!
More About the Disorders. Learn more about Chiari malformation, syringomyelia and related disorders such as Ehlers-Danlos syndrome and others. See these one-sheets on CM, SM, and EDS as a starting point. The CM/SM Handbook is also an excellent resource for adults, children and their families, written by trail-blazing physicians in the field of Chiari malformation and syringomyelia.
What to Expect from Surgery. Patients, parents and doctors often have to decide whether surgery is a good option in each individual case. Learn more about this decision-making process, find a list of items to bring to the hospital for surgery and learn what to expect after a surgery.
Helpful Items for Chronic Pain. Struggling with chronic pain? This is a list of everyday items that can potentially help ease pain. Have a handy item you’d like to add? Tell us about it!
Parent Connection. Excellent resources for parents of a child with Chiari, syringomyelia or a related disorder and who’re not sure where to begin.
Join Our Online Support Community . When you’re dealing with difficult disorders like these, it’s important to know you’re not alone. Join our community on Inspire and get in touch with fellow patients, parents and caregivers. Ask questions, find advice and control your level of anonymity the entire time. For live, virtual support meetings check our Events page.