NBC: Brain Pain: Illnesses May Be Misdiagnosed

Discussion in 'Fibromyalgia Main Forum' started by healing, Aug 4, 2003.

  1. healing

    healing New Member

    We have discussed this condition before on this board. Just thought it was interesting that NBC picked it up.
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    nbc4.com
    Brain Pain: Illnesses May Be Misdiagnosed
    Neurosurgeons Disagree On Skull Surgery
    UPDATED: 9:49 a.m. EDT August 4, 2003

    CHICAGO -- About 5 million Americans have been told they have fibromyalgia or chronic fatigue syndrome, but there is a controversy over the diagnosis.

    Many of these patients may have an entirely different condition that can be helped, reported WMAQ-TV in Chicago.

    In the case of Inga Aragon, she had mysterious headaches that began when she was in second grade and got worse over the years.

    "(The headache) started at the base of my head in the back," said Aragon (pictured, right). "And it would sort of move up to the front."

    The headaches affected Aragon profoundly.

    "I left college because of it," Aragon said. "I had the eyes tearing and vomiting -- and all that fun stuff."

    Aragon could neither read nor use her talent of drawing because looking down made the pain worse. Nobody could explain why.

    "I went to tons of doctors," Aragon said. "All kinds of doctors, and no one could figure it out."

    Then three men in Aragon's life came to her rescue, she said.

    First she married Jason, who provided support.

    Then her father, suffering some of the same symptons, began to do research.

    Together, they found Dr. Dan Haffez, a neurosurgeon at St. Joseph Hospital in Chicago, who diagnosed Aragon and her father with a hereditary brain defect known as chiari malformation.

    "The skull is a little small for the brain," Haffez explained. "And a portion of the brain descends into the upper spinal canal."

    Symptoms of chiari malformation can include pain, dizziness and weakness. But symptoms alone can be deceiving because they mimic two incurable conditions -- chronic fatigue syndrome and fibromyalgia.

    "It's very possible that 20 to 25 percent of fibromyalgia sufferers may, in fact, have a problem emanating from the cervical spinal cord, and that problem may be caused by chiari malformation," Haffez said. "Or it may be caused by a disk. Or it may be caused by a narrowing of the spinal canal. The numbers can be quite staggering."

    Haffez is one of the country's leading neurosurgeons who believes chiari malformation is underdiagnosed. If it's true, then it means that thousands of patients may be missing out on a cure, because chiari malformation can be corrected with surgery.

    In Aragon's operation, Heffez hollowed out some of the back of her skull. That created enough room for her brain, so it would stop squeezing down her spinal cord.

    The American Association of Neurological Surgeons worries that some patients may be getting the surgery even though they don't need it. The association "does not recognize the use of cervical decompression surgery as a treatment alternative for chronic fatigue syndrome."

    Haffez said he believes the surgery is controversial because "the lay message is that people are doing surgery, chiari-type surgery, in order to treat fibromyalgia or chronic fatigue syndrome. Nothing could be further from the truth."

    Haffez believes the controversy would end with better diagnosis of chiari malformation. He said doctors need to go past the symptoms and look for more subtle clues in brain scans, then perform a meaningful neurological exam that can tie all the elements together.

    "There's a certain pattern of abnormalities that will point you to this particular area of the nervous symptom," Haffez said.

    Although other neurosurgeons say the diagnosis is not easy, the operation worked for Aragon and her father. The pain disappeared for both of them.

    "I went back to school," Aragon said. "I am working 40-hour weeks now. I just couldn't do those things before. I'm really excited."

    Studies show that about 85 percent of patients who undergo the surgery either have significantly less pain or are completely cured.