An Uncommon Cold: Runny Nose and Headaches Signaled Rare Disease

When Lisa Simmons woke up with the sniffles on a gray day in 2017, she wasn't alarmed. It was November in Washington. A cold was nothing unusual. A week later, she felt better. Then her nose started running again. 

This time, it was relentless. "It was so bad I had tissues stuffed up my nose all the time," Lisa says. 

This marked the start of a months-long journey to the right diagnosis: a cerebrospinal fluid (CSF) leak, a rare and serious condition that can lead to meningitis, a potentially fatal infection of brain tissue.

A deepening mystery
Lisa Simmons, CSF Leak, treatment, Cedars-Sinai

Her symptoms hung on so long that she ruled out a cold. Maybe she had allergies. She waited, expecting things to get better, but she couldn't shake the feeling that something was wrong. 

Finally, one day in early spring, the drainage stopped. Lisa's relief lasted just 24 hours, however. If the runny nose had been bad, what followed was worse.

"I got a headache that was so severe, I remember the exact time it hit," she says. "It was 11 a.m., and I went to sleep to get rid of it." 

When she woke up 45 minutes later, she was terrified.

"My head was killing me, I'd gone deaf in the right ear and my left ear was muffled." 

Strange new symptoms appeared, adding to Lisa's confusion and fear. Her sense of smell was heightened so dramatically that she threw up when a friend was cooking spaghetti.

"I couldn't take the smell, and I couldn't eat because I couldn't keep anything down." 

Her head kept pounding. Her boyfriend drove her to urgent care, where doctors sent her home after diagnosing her with a sinus infection and migraine. 

The next morning, the headache was so bad Lisa could barely get up. She was also severely dizzy. This had to be something more than the doctors had said. This time, her boyfriend took her to the ER, where a CT scan came back normal. The doctors prescribed steroids, antibiotics and painkillers—anything that could make her feel better. 

Nothing helped. 

Dead ends

After three more trips to the ER, no diagnosis and no relief, Lisa began googling her symptoms. One result popped up over and over: CSF leak.

"It fit, but it was so rare," Lisa says.

Another thing kept popping up: the name Wouter I. Schievink, MD, director of the Microvascular Neurosurgery  and Cerebrospinal Fluid (CSF) Leak Program at Cedars-Sinai

But Lisa was in Washington and figured she could get the help she needed there. Her doctors rejected the idea of a CSF leak. They asked if she'd been in a car accident. She hadn't. They ordered an MRI, which brought startling news.

"The doctor said my brain was sagging, but they didn't know how to treat it."

Desperate, Lisa drove to Seattle, 2.5 hours away. She saw multiple specialists. None had answers. 

"Meanwhile, I couldn't even sit up while I was talking to them," Lisa says.

A life-changing call
Lisa Simmons, CSF Leak, family, Washington, recovery

Losing hope, she sent her records to Dr. Schievink. One morning, while she was driving, the phone rang. Dr. Schievink was on the line. She finally heard the words she'd been waiting for.

"He said 'I have reviewed your MRIs and I know what you have.' When he added, 'I can fix it,' I broke down and sobbed," Lisa says.

A week later, Lisa was at Cedars-Sinai. Dr. Schievink's team quickly went to work. They treated the problem with blood patches—a surgical procedure that uses the patient's blood to patch spinal cord leaks. She was anxious, but the team put her mind at ease. 

The treatment worked. Lisa felt instant relief. Her hearing came back, too.

"It was the most amazing moment of my life," she says. 

Relief and a new perspective

Because Lisa developed rebound intracranial hypertension, a potential complication of blood patches, she still feels pressure build up in her head. Unlike the pain she suffered from the CSF leak, the discomfort is tolerable, can be treated with ice or heat and is not a major daily problem.

Months of suffering and fear had an effect on Lisa, who says she has a different perspective on life now.

"I have true compassion for people who are going through difficulties," she says. "I'm grateful for things I use to take for granted, like being to get up and move around." 

Reflecting on the care she found at Cedars-Sinai, Lisa says, "Dr. Schievink gave me my life back. I wish I lived closer so all my medical needs could be taken care of at Cedars-Sinai."