Personal Stories

Bill

It all started for Bill after a motor vehicle accident in August of 1995. After being released home from the hospital, he quickly returned to work but the problems were obvious: forgetfulness, leaving his vehicle running in the parking lot, passing out at his desk and car, tremors, migraines, personality changes, anger, then a seizure. [...] More »

Kimberly

Kimberly was diagnosed at the age of three with idiopathic syringomyelia. She underwent a major surgery to have a syrinx shunt placed in 1999 but her relief was short lived. After consulting with a more experienced neurosurgeon, the family learned that Kimberly actually had Chiari malformation and a tethered cord which were the cause of [...] More »

Dana

Dana lives in Connecticut and was diagnosed with syringomyelia from C-5 to conus in June of 2008. Her colorful hat hides a shaved head. Severe head pain had her literally “pulling her hair out”, so she finally gave up and shaved it off. She has a wide variety of symptoms including neck, arm, [...] More »

Keegan and Kaylee

This brother and sister have something in common after all! Both have the same diagnosis. Keegan was diagnosed at the age of eight with Chiari malformation and syringomyelia. He was born with Hydronephrosis, an extra digit, benign heart murmur, allergies/asthma/a food allergy, sleep apnea, and restless leg syndrome. He had decompression surgery in [...] More »

Glenna

Glenna has had scoliosis for as long as she can remember. It was never much of a problem until Christmas Eve 2004. Suddenly, out of no where, Glenna experienced the most excruciating pain she’d ever had. It started in her spine and wrapped around to the front of her rib cage, up [...] More »

Roz

Roz was diagnosed at the age of 48 with both Chiari and syringomyelia. She had a decompression surgery in 1999. The surgery was successful in providing relief of her debilitating headaches. She still has a syrinx and manages her remaining symptoms with the help of a pain specialist. Roz is a regular participant on [...] More »

The Kelly Family

For the Kelly family, Chiari and syringomyelia are a family affair. It took 20 years for mom, Jennifer, to finally receive a diagnosis of Chiari after years of being dismissed by various physicians. She lives in New York with her husband, Tom, and children: Michael, Katie, and Gracie. Although she was told it was very [...] More »