Woman finds her own answers to illness
By ALYSSA HARVEY, The Daily News
Leslie Witty’s pain was all in her head.
“I’ve always been prone to headaches,” the Warren County woman said. “I would take Tylenol or Advil and they would go away. It was nothing severe at all.”
Then came the day her headaches became a more serious problem.
“More than three years ago, I was driving down the road with my little boy in the back seat,” she said. “Suddenly, the whole left side of my body felt like I had put my finger in an electric socket. I thought I was having a stroke.”
Witty wasn’t having a stroke. She suffers from Chiari malformation, a serious neurological disorder where - according to the Chiari Malformation Syringomyelia News Web site at www.conquerchiari.org
- the bottom part of the brain, the cerebellum, descends out of the skull and crowds the spinal cord, putting pressure on the brain and spine and disrupting the normal flow of cerebrospinal fluid.
“It felt like pins and needles - a shock sensation. When things were still, I felt a little off balance, like I was on a boat,” she said. “Words came out wrong. I had memory issues, particularly with my short-term memory. Every time I turned my head side-to-side it made everything worse.”
It would take three years for Witty to find the cause of the excruciating headaches and other symptoms that plagued her daily. The day she first felt the tingling sensations on the left side of her body, she saw a doctor, who thought a bone spur might be the cause of her ailment. He referred her to an orthopedist, who thought it was something else.
“He said, ‘I don’t want to scare you, but it might be (multiple sclerosis),’ ” she said.
Her symptoms made her job as principal at Old Union School challenging.
“I was working the whole time. I didn’t want to let feeling bad be my whole life,” she said. “Until you experience it, you can’t describe it to people.”
In the meantime, she saw a variety of doctors, neurologists and headache specialists, had about 20 MRIs and was diagnosed with a variety of ailments, including complicated migraines. She even went to the Mayo Clinic in Minnesota, where doctors thought the headache was coming from her neck.
“They thought I should get shots in my skull to help manage the pain,” she said. “It was awful. It didn’t help.”
Frustrated with the lack of answers, Witty began research on the Internet. She would type in key words from her MRI results and reports and the word “Chiari” kept coming up, she said. Then one day, she happened upon a message board that offered her some answers.
“Someone posted that a doctor in Australia who was an expert in Chiari would look at MRIs for free,” she said. “I contacted him, and he e-mailed me within a week.”
Knowing that a trip to Australia would be challenging, the doctor suggested she contact The Chiari Institute in New York. She went there in April and had tests and a special type of MRI called a cine MRI so they could see the movement of her spinal fluid.
“My spinal fluid got to a point and stopped, so every time I moved my head, my brain was hitting my skull,” she said.
Because there wasn’t enough room in her head, doctors decided to remove an area in the back of her skull to make more room. Witty was scheduled for surgery in June, but a week before the surgery doctors contacted her and told her they had found something else.
“I had a tethered spinal cord. It was adhered to the vertebrae and base instead of floating in fluid,” she said. “My spinal cord was pulling everything down. Everything was 2-1/2 inches below where it was supposed to be.”
Instead of brain surgery, Witty had an operation on her spinal cord June 1. Brain surgery was scheduled for Aug. 27. She didn’t mind much, though.
“I was just relieved to know that something was causing this,” she said. “(Doctors said) that if I hadn’t done anything I could have eventually become paralyzed.”
On Aug. 27, she returned to New York for brain surgery. She was hospitalized for a week and remained in New York for two more days to make sure everything was fine. She got a T-shirt that said, “I’ve got too much brain to contain” and began referring to herself as a “zipperhead.”
“People who have this type of surgery call each other that because of the scar,” she said, which runs from the middle of the back of her head to the base of her neck.
Witty said the staff and medical professionals at The Chiari Institute are amazing.
“They help people like me who have been told that there’s nothing wrong,” she said. “It takes finding a picture to show that something is going on.”
Since she returned home, she has started physical therapy. She said she still feels stiff, but her spinal fluid is flowing and she’s waiting for her muscles to calm down.
“Everything is in the right spot,” she said, smiling. “They told me not to expect improvement for four to six weeks.”
Witty said she has received a lot of support from family, which includes her husband, David, and their three children - Lia, 11; Caroline, 8; and James, 6 - and friends. She’s looking forward to the day she can return to work at Old Union School.
“I miss it,” she said. “I want to be out there.”
Witty advises people who are searching for answers to mystery illnesses to become their own advocates.
“Sometimes you’re forced to find your own answers. I feel blessed that I found people and a diagnosis so quickly. The average time for people to find out they have Chiari is usually six to 10 years,” she said. “Get copies of MRIs and reports. Try to get as much information as you can. That MRI and report got me to this point.”
— Witty has a blog about her experience. For more information, visit http://wittybigbrain.blogspot.com