STRANGE PAIN: Medical nightmare began with young driver not paying attention

(KMSP) - It was a relatively minor car crash. But it was enough to cause a strange, very painful, life-changing disorder. A Twin Cities family shared their story in the hopes drivers start paying more attention behind the wheel. 

Julie Roberts watches the jets go right over her house. Her fascination with planes started as a little girl. It turned into a career as an airline pilot.

"All that's gone, all that's just wiped out and we're starting all over," said her husband Eric Sloane.

Roberts has gone from controlling a 395,000 pound flying machine to barely being able to stomach a car ride.

The career ending medical nightmare began with a young driver not paying attention. Roberts said there was not time to stop as the driver turned right in front of them.

"I had gone to the E.R. and on an X-ray there was nothing broken, just whiplash," she recalled.

At first, Roberts thought the intense pain would subside after physical therapy.

"It wasn't until a full year after the accident that I started having paralysis of my hands and a lot of burning pain across the neck and in the hands that we couldn't figure out what was going on," said Roberts.

Doctors wondered if multiple sclerosis was robbing her hands of feeling. But then an MRI discovered a strange looking shape in the middle of her spinal chord.

Condition known as syringomyelia

Syringomyelia can cause chronic, debilitating pain and over time, permanent paralysis.

The cyst disrupts brain signals from reaching other parts of the body.

A congenital abnormality is the most common cause of syringomyelia. 

But about 10,000 cases in the United States happen from a traumatic injury.

For Roberts, it was the impact of a seemingly minor car crash.

"It's like a physical terrorism I think, cause it changes from day to day," said Roberts.

She doesn't drive anymore, can't lift anything over 15 pounds and is fearful of coughing or sneezing, because it might cause the cyst in her spinal cord to grow and leave her paralyzed.

Research at the National Institutes of Health

Dr. John Heiss is doing research for the National Institutes of Health.

"We generally don't tell patients that they'll get better, but some people do," he said.

Roberts is one of nearly 200 syringomyelia patients who are getting regularly MRI scans.

"Our study aims to figure out which patients are going to get worse and which patients aren't," said Heiss.  "And the patients that may get worse, we want to operate on before they become worse."
     
Surgery is a very risky proposition; paralysis is a possible side effect.

Roberts avoids using any drugs to deal with her chronic pain.

Her most recent MRI shows the cyst in her spinal cord hasn't grown any larger.
     
But it's causing unpredictable spikes in her blood pressure and body temperature.
 
"That's probably the scariest issue I have right now," she added.

Before the car crash, the former pilot had planned to spend another 20 years in the cockpit, then retire to India where she operates a charity to educate poor children.  
  
Now her focus is to try and stay positive.

"I do everything I can. I'm determined to find something that will help," said Roberts.

Sheryl Nixon's story

Sheryl Nixon also developed syringomyelia after a car crash.

"Two days later I woke up with the worst migraine of my life. I thought I was going to die," said Nixon.

Then she started losing feeling in her hands and feet. One day while she was stripping wall paper she noticed blood all over the floor.

"The razor blade was still in my foot and I couldn't feel it," she said.

As her symptoms got worse, she opted for a 12-hour surgery to reduce pressure that was building up from the cyst in her spinal cord.

She has had three surgeries. Each one required a six-week hospital stay. Her condition has stabilized, but Nixon still has pain and can no longer run her cleaning business.

"There is no such thing as a small accident," she said.

Nixon refused to accept an insurance settlement until she knew what was causing her health problem.  Not until months after the crash when she had an MRI did doctors realize it was syringomyelia.

For more information about syringomyelia, click here.