Rachel Hale knew her adolescence was unusual. The headaches, the nausea, the dehydration, the blood draws leaving scars on her arm — this wasn’t what most other kids her age were going through.
By the time she was 24, Hale was on her fourth diagnosis and had been on headache medication for years. Her condition prevented her from participating in sports and social events. Sometimes she couldn’t even go out to eat with friends. She had bounced from physician to physician and hospital to hospital, without much relief.
Then, in November 2017, when Hale was at Stanford Hospital because she was having trouble getting out of bed, she met Linda Nguyen, MD. A clinical associate professor of gastroenterology and hepatology at the Stanford School of Medicine, Nguyen was assessing Hale’s gastrointestinal issues.
Nguyen had recently heard from Ian Carroll, MD, a headache and orofacial pain specialist at Stanford. Carroll had shared information with her about cerebrospinal fluid leaks: He said the leaks were characterized by chronic, intractable nausea in addition to ringing in the ears, vomiting and headaches.
When Nguyen contacted Carroll about Hale, he immediately took an interest in her case. He ran scans and imaging, and diagnosed a CSF leak. “I don’t think I’ll ever forget doing the first diagnostic test where he just had me lie flat,” recalled Hale. “It was the first time my headache has ever gone away, and it was a huge ‘Aha!’ moment for me.”
A patch made from blood
A CSF leak occurs when the meninges — a covering that protects the brain and spinal cord and holds the cerebral fluid in place — forms a tear, allowing the fluid to escape. CSF leaks can occur spontaneously, but people with Marfan and Ehlers-Danlos syndromes, both connective tissue disorders, are at the highest risk.
To treat the CSF leak, Carroll performed an epidural blood patch. In the procedure, the patient’s own blood is injected into the meninges, creating a seal over the part where the bag is torn.