Tag: Chiari malformation

Community, Resources, Society

Extreme Makeover Home Edition Builds New Home for Chiari Advocate

Kerrie Smyres

Julie Carter and her three daughters all have Chiari malformation, a rare abnormality at the base of the brain that results in brain tissue extending into the spinal canal, which causes severe headaches. Nearly a half a million dollars in debt from brain surgeries, they lived in a refurbished chicken coop. An advocate for Chiarians and founder of Chiari People, Julie and her family have a new home courtesy of Extreme Makeover Home Edition.

Chiari has more than 85 possible symptoms and is frequently misdiagnosed as migraine or a host of other headache disorders. Other conditions associated with Chiari include syringomyelia, scoliosis, tethered spinal cord and pseudotumor cerebri.

The show’s executive producer said they received more nominations for Julie than they ever have for any one person. The builder of the home has an excellent profile of Julie Carter and day-by-day photos of the project. Some places to learn about Chiari malformation:

If you know of good Chiari resources, please leave a comment.

The show airs on ABC this Sunday, October 21.

Patient Education, Reader Stories

Chiari Malformation & Headache

Kerrie Smyres

One of the uncommon causes of headache is called Chiari malformation. Also referred to as Arnold-Chiari, it’s a condition where brain tissue protrudes into the spinal canal. It happens when part of the skull is extra small or misshapen and presses on the brain, forcing it downward.

As with much of the scary stuff I write about, very few people’s headaches are caused by this malformation. So don’t panic! Chiari is detected by an MRI and headache is only one of the many possible symptoms.

Anna Roberts, a medical student in the UK, was recently diagnosed with and had surgery to correct her Chiari malformation. She describes having brain surgery while a medical student — a situation where she has enough information to be scared, but not enough to know what’s really happening.

Mayo Clinic has an easy-to-read explanation of Chiari, it’s symptoms and treatments. You can also learn more from NIH‘s Chiari fact sheet.

[via Kevin MD]