Chiari Online Support Group

Chiari Info


#1

Online Chiari Information Resources

CSF - Chiari & Syringomyelia Foundation – Patient & Physician Education

American Syringomyelia & Chiari Alliance Project - Conditions

NIH/NINDS

UK NHS – Chiari Malformation

UK Brain & Spine Foundation

Ann Conroy Trust

Patient Info UK:
Chiari Malformation
Syringomyelia and Syringobulbia

World Arnold Chiari Malformation Association (WACMA)

AANS - Chiari Malformation Patient Information

U.S. Employment & Disability / U.S. Health Insurance

U.S. Department of Labour

National Association of Insurance Commissioners (States & Jurisdictions)

Losing Your Health Insurance - Your Options (Consumer Report)

The ADA: Your Employment Rights as an Individual With a Disability

What’s Your Boss Allowed to Ask When You Call In Sick?

Social Security Disability (About this site: Applying for Social Security disability and SSI disability benefits can be difficult due to how long a claim can take and the high chance of being denied. But applicants who are denied can learn about the system and file an appeal. The purpose of this site is to distribute information that is typically impossible to get from the representative taking your claim for SSD and SSI benefits.)

JAN - Job Accommodation Network If you have a question about workplace accommodations or the ADA and associated legislation JAN can help you.

Finding a Doctor/Surgeon

Please see the Ben’s Friends Doctors Directory.

American Association of Neurological Surgeons (AANS)

For U.S. pediatric neurosurgery: The American Board of Pediatric Neurological Surgery (the list of board certified neurosurgeons guarantees they did a fellowship, have a practice that is at least 75% pediatric and meet at least minimum requirements).

U.K. Employment & Disability

Gov.UK

Carers UK

Chiari Presentations:

Posterior Fossa Decompression (non graphic illustration of a surgical procedure)

Books:

The Chiari Book: A Guide for Patients, Families, and Health Care Providers - John J. Oro and Diane Mueller

Chiari Malformation Patient’s Sourcebook - Jennifer Wetzel and May Chodron

Chiari Malformation: Causes, Tests and Treatments - John Hewitt M.A. and Michelle Gabata M.D.

Arnold-Chiari Malformation: A Medical Dictionary, Bibliography, and Annotated Research Guide to Internet References - Icon Health Publications

The Official Parent’s Sourcebook on Chiari Malformation: A Revised and Updated Directory for the Internet Age - Icon Health Publications and Health Publica Icon Health Publications


How important is it to get this testing done?
#2

Some very good resources