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CSF Leak Surgery Gets Woman Back on Her Feet

After a successful surgery at Cedars-Sinai, Elizabeth Johnson returned to her home near Santa Fe, New Mexico, and is working to rebuild the muscle mass she lost while she was incapacitated with a leak of cerebrospinal fluid.

When Elizabeth "Beth" Johnson stood up from working at her computer last 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 leading to periods of confusion.

After two attempts at another neurosurgical center failed to patch the hole, Johnson, who lives near Santa Fe, New Mexico, came to Cedars-Sinai, where Wouter Schievink, MD, director of the Microvascular Neurosurgery Program in the Department of Neurosurgery, surgically repaired the tear.

Elizabeth Johnson and her neurosurgeon, Wouter Schievink, MD, after successful repair of a cerebrospinal fluid leak

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 — first felt the strange sensation in her neck, she didn't slow down. 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 a 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 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," said Johnson, who was flown by air ambulance to Los Angeles on 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.

But working from the back to shave down the calcification and repair the lining at the front of the spinal canal is not straightforward. The spine's large, drum-shaped bones — called vertebral bodies — are stacked on the front side of the spinal canal, separated by discs, which act as cushions. Each vertebral body has a hard, bony structure called a pedicle, which consists of two parts that form the sides of the spinal canal and connect the large bones to the smaller ones in back. The entire structure protects the spinal cord, nerves and nerve roots that carry electrical signals to and from the rest of the body.

"We removed a piece of bone from the back part of the spinal canal and took out half of one of the pedicles. By removing half of a pedicle, I could rotate the spinal cord away from where the tear was, which gave me enough room to work. I closed the tear with four sutures, which I'm confident will provide a strong and permanent repair," Schievink said.

"We always use advanced technology to frequently monitor the spinal cord — before and after each suture is placed," he said. "When her last suture was in place, the monitor detected a reduced signal to her right leg, and she woke up with some weakness in that leg, which resolved overnight. But she had considerable weakness resulting from weeks spent incapacitated. That kind of generalized deconditioning doesn't improve immediately, and she would need a course of physical therapy to really get back on her feet."

As usual after such a surgery, Johnson remained quiet and flat in bed for a day. She sat up in a chair on Dec. 8 — for the first time of any duration since early November — and was able to walk with a walker the next day.

She didn't need the walker for long, and an MRI three days after surgery confirmed the obvious: The leak was stopped, and fluid was steadily returning to its normal level. The typically active patient — Johnson likes to ride a bike and participate in yoga — is working hard to rebuild the muscle mass she lost, and she continues to regain the mental quickness she had.

"I have said to Dr. Schievink repeatedly, 'I couldn't stand. I couldn't sit. And my brain was being totally compromised,'" Johnson said. "'You saved my life. I am so grateful.'"

Elizabeth Johnson (right) walks with her partner, Charlotte "Char" Schnepf. Before her spinal surgery at Cedars-Sinai, Johnson was unable to stand without pain.