When Elizabeth “Beth” Johnson stood up from working at her computer Oct. 28, she noticed “a kind of funny feeling” in the back of her neck. By Nov. 2, the sensation had become an excruciating headache that came on whenever she tried to stand or sit upright.
Her symptoms and MRIs suggested that a hole had developed in the dura, the lining around her spinal cord. With the loss of cerebrospinal fluid – which circulates around the brain and spinal cord – her brain shifted and sagged away from her skull when she tried to stand, causing severe positional headaches and eventually leading to periods of confusion.
After two attempts at another neurosurgical center failed to patch the hole, Johnson, who lives 13 miles from Santa Fe, N.M., came to Cedars-Sinai, where Wouter Schievink, MD, director of the Microvascular Neurosurgery Program in the Department of Neurosurgery, surgically repaired the tear.
Schievink, one of the world’s most experienced neurosurgeons for this diagnosis, said Johnson’s tear was extensive but no larger than many he has treated. It was, however, located on the front side of her spinal cord, making surgical access more challenging and the repair procedure more delicate.
When Johnson – who describes herself as a fast-moving, quick-thinking Type A personality – felt the strange sensation in her neck, she didn’t slow down at first. But as symptoms got worse, she wondered if she should go to an urgent care center. Friends surmised she was just stressed out and recommended therapeutic massage. But by Nov. 5, no longer able to sit or stand without pain, she saw her primary care physician, who immediately sent her for MRIs that showed she had spontaneous intracranial hypotension – a defect in the dura had opened, allowing spinal fluid to leak.
Two days later, Johnson was flown by air ambulance to another neurosurgical center, where doctors used injections of her own blood to try to seal the tear – the first line of treatment for most leaks. Although she was discharged to go home Nov. 15, Johnson and her partner of 14 years, Charlotte “Char” Schnepf, quickly realized the blood patches hadn’t held.
“When I called the doctors, they said to come back and have a third blood patch. They said sometimes people need 10 of them. But this didn’t make sense to me,” said Johnson, manager of a family compound and a life transitions coach.
At the suggestion of a client and friend who had found Schievink’s name online, Johnson called Cedars-Sinai; Schnepf wrote a letter, collected copies of the original MRIs and shipped them overnight to Schievink.
“He looked at my MRIs and called me the next day,” recalled Johnson, who again was flown by air ambulance, but this time to Los Angeles Monday, Dec. 2. She met Schievink that afternoon and began undergoing a series of diagnostic procedures. They confirmed the defect’s location at the front of the spine and showed a calcium deposit on a disc, which may have contributed to the tear.