Michelle Farris said she suffered for three years and went through seven doctors before discovering she had a brain condition.

Farris, coordinator of the conference center and adjunct instructor at Northeastern State University’s Muskogee campus, said the condition is called Chiari malformation.

Symptoms include dizziness, muscle weakness, numbness, vision problems, headache, and problems with balance and coordination, says the National Institutes of Neurological Disorders and Stroke. It is caused by a lack of space for the lower and rear part of the brain.

Although this condition affects slightly less that one in 1,000, most of these people don’t show symptoms, according to the University of Southern California Neurological Surgery. That means that in Muskogee County, approximately 70 people have the condition and may not know it.

Farris, 35, underwent surgery to correct the condition.

“It was a very scary feeling to go into the brain surgery,” Farris said. “They opened up my neck and skull. What happens with Chiari is that your cerebellum starts to sag onto your spinal column. And it can block the flow of your spinal fluid up into your brain and that’s when you start having the symptoms.”

To correct the condition, surgeons make more room for the cerebellum, she said.

“They removed part of my skull, and there is an arch above the vertebrae that they removed,” she said.

Farris remembers when she first experienced symptoms.

“In July of 2006, my husband and I had just bought a new home and we started packing to move,” she said. “I noticed that every time I would bend over to pick up a box or pull something out of a box I would get a headache. I went to my primary care physician and he thought I was getting a sinus infection, because I’m pretty prone to those. So he gave me an antibiotic, decongestant, things like that.”

That didn’t work, and a subsequent MRI was declared clear, so Farris was referred to a neurologist in Tulsa. That neurologist diagnosed her with migraine headaches, but none of the medications worked. She was referred to a different neurologist who diagnosed a cerebrospinal leak but the tests came back clear. Farris was referred to a third neurologist at the University of Oklahoma Neurological Clinic, who thought she had another type of headache. A year of medications brought no relief.

“Then I was referred to a fourth neurologist at OU, and he decided that since it had been a little over a year since I had had my MRI, that he wanted to do another one to see if anything had changed,” she said. “So I was told in February when I went back for the results that I had Chiari malformation.”

Farris said she was referred to neurosurgeon Dr. Timothy Mapstone at OU Medical Center, who showed her the malformation in her brain was visible in her MRIs going back to 2006 but had been missed multiple times. Mapstone arranged the surgery.

There was a great deal of emotional stress, Farris said, but she found many sources of support.

“I found an online support group after I was diagnosed,” she said. “These were people who had actually gone through the misdiagnosis, basically the same story. Some had gone through the surgery and not had good outcomes; others had had great outcomes and were returning to a normal life. So I found a lot of inspiration there.”

Recovery took three months, and Farris said she no longer has any symptoms.

Rick Labuda, executive director and founder of Conquer Chiari, said that if a person has multiple symptoms of Chiari, they should always talk to their doctor.

“If they feel strongly about it, they can request an MRI,” he said. “MRI is the base test that’s used.”

Labuda said the age of the patient can influence how soon they are correctly diagnosed.

“I think that awareness among pediatricians and medical professionals for children has grown dramatically,” he said. “So I think it would be identified much more quickly in kids. But for adults, it can be years to get a proper diagnosis. There are a couple of reasons for that. One reason is that the symptoms vary a lot and they can be a bit vague.”

Labuda said the other issue is that for a lot of primary care physicians and family doctors, this is not a condition that pops into their mind. For an adult, a doctor is going to think of multiple sclerosis before they think of Chiari, although there are as many people with Chiari as with MS.

“The primary treatment is surgical,” he said. “For most people, if the symptoms are bad enough, they require surgery. The surgery is successful about 80 percent of the time.”

Labuda said public awareness is a problem. He estimated that more that 300,000 people in the United States have Chiari. That’s at the level of multiple sclerosis, but although almost everyone is familiar with MS, very few have heard of Chiari malformation.

“Our organization has been lobbying Congress to focus some money on this,” he said. “Chiari affects adults, children, people of all races, and both genders. It can range from mild symptoms to completely debilitating. It is a very serious condition, but I think the Chiari community is raising awareness and advancing a research agenda, so I always like to give people hope.”

Reach Keith Purtell at 684-2925 or kpurtell@muskogeephoenix.com.



Chiari facts

• Causes a wide ranging, diverse set of symptoms. Research has shown that 95 percent of patients experience at least five symptoms.

• Diagnosed using combination of MRI, neurological exam, physician’s judgment, and other tests; patients often go five or more years before being properly diagnosed.

• A study of over 300 Chiari malformation patients found that 57 percent had at one time been told by a doctor they were suffering from a mental or emotional problem.

Source: conquerchiari.org