British Columbia

How a sneeze turned B.C. MLA into advocate for awareness of spinal fluid leaks

Michelle Stilwell experienced debilitating daily headaches caused by a cerebrospinal fluid leak.

Michelle Stilwell recalls headaches like 'migraine on steroids' after spinal CSF leak

Michelle Stillwell is the MLA for Parksville-Qualicum.

For Michelle Stilwell, it started with a sneeze.

"I sneezed hard, consecutively, five times," she said. "I knew right away that something was wrong." 

That sneeze caused a tear in the dura mater that surrounds the spinal cord. The spinal fluid that bathes and protects the brain and spinal cord started to leak out through the tear.

The condition is known as a spinal CSF leak and it causes debilitating headaches.

"A migraine on steroids" is how Stilwell, MLA for Parksville-Qualicum, describes the pain. 

"It gets to the point where the only relief you have is to lay down," she said. 

'Busy life'

For Stilwell, the spinal CSF leak happened during the busy provincial election campaign last spring. At first, she tried to ignore it.

"I have a busy life and there were other things to do," she said. "I just assumed it was a headache that would eventually go away." 

When Stilwell, who uses a wheelchair because of a previous spinal cord injury, finally went to the doctor she was diagnosed quickly by her neurosurgeon.

However, experts say the condition is often missed because there are many potential causes for headaches.

Under-diagnosed condition

"It's significantly under-diagnosed," said Dr. Christine Lay, director of the headache program at the University of Toronto, based at Women's College Hospital.

"The more people talk about it, the more people might say, 'Hey, I think that is me, I think that is what might be going on,' and they will go talk to their doctor."

The most common symptom is a headache that worsens when a person is standing upright and eases when they are lying flat, Lay says. People may also experience nausea, neck stiffness and dizziness. 

The condition is rarely life threatening, but it is often debilitating.

A spinal CSF leak can be caused by a significant trauma or sports injury. It can also be a side-effect of medical procedures such as an epidural.

Out of the blue

But it can also happen spontaneously, as it did in Stilwell's case.

"As a medical care provider you might be a bit puzzled by this, trying to put the whole picture together and understand what is going on," Lay said.

For Stilwell, treatment successfully fixed the leak, allowing her to get back to work at the legislature. 

Now she is trying to raise awareness about the condition and the treatment options that are available, which range from simple bed rest with fluids to spinal injection procedures or surgery.

"Fortunately in many circumstances you can actually cure the patient if we can seal off that hole," Lay says.

Stilwell shared her story in the B.C. Legislature this week in recognition of "Leak Week", a campaign to bring attention to the condition.

"I want people to be able to find that treatment so they don't have to suffer," she says.