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Closing in on Treatment for CFIDS/FM: Spine, Skull Surgery May Help Many With CFIDS

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For some patients with CFIDS and fibromyalgia, the crux of their problems may be all in the backs of their heads.

New research is focusing attention on neurological conditions in which the brain stem or upper portion of the spinal cord is compressed. All the signals that go from the brain to the body and vice versa must pass through this narrow passageway, just about a half an inch in diameter. When this nerve passageway is squeezed, a person can experience the same assortment of symptoms that are familiar to persons with CFIDS and fibromyalgia.

The best known of these conditions is the Chiari malformation, in which the cerebellar "tonsils" (a portion of the cerebellum, shaped like the tonsils in the neck) extend several millimeters through the opening in the base of the skull (the foramen magnum) that allows the spinal cord to attach to the brain. This puts pressure on the brain stem and spinal cord. In a less well recognized but perhaps much more common condition known as cervical stenosis, the spinal canal appears normal but is actually too narrow for the spinal cord. Sometimes a condition called syringomyelia develops, in which a cyst grows in the spinal canal, putting greater pressure on the spinal cord.

Symptoms from these conditions often don't develop until adulthood, when the compression may grow more severe or may be triggered by an injury such as whiplash, surgery that involves hyperextending the neck, or prolonged coughing. Thus, onset of symptoms may be gradual or sudden. And symptoms may vary widely according to the individual.

Sound familiar? Difficult diagnosis, vague symptoms–but there is an enormous benefit to patients when this diagnosis can be made. There is an accepted and generally effective treatment.

Treatment for these conditions is surgery to expand the space available for the brain stem and spinal cord. This is done by removing bone from the skull and/or the cervical (top seven) vertebrae. Neurosurgeons who perform the surgery report that most patients experience significant and broad improvement of symptoms, beginning almost immediately following surgery and progressing with time as the spinal cord recovers from the compression. While it is not at all clear whether surgery can relieve all the symptoms associated with CFIDS and fibromyalgia, some fibromyalgia patients who have undergone the decompression surgery have reported that their tender points completely disappeared.

"We're very hopeful that this will be the first real, viable treatment for many people," said Rae Gleason, Director of the National Fibromyalgia Research Association (NFRA) in Salem, Oregon. The NFRA is funding a $150,000 study to determine the percentage of fibromyalgia patients who have a Chiari malformation or spinal cord compression.

"The treatment is not 100%,”Gleason said. "Each person gets back a different kind of quality. Of the people I've talked to, the most dramatic improvement has been that headaches are gone. Number two, fatigue is greatly decreased, "and flare-ups seem to be limited. For some people, the irritable bowel syndrome is basically gone. So the relief comes in different ways."

Neurosurgeon Dr. Michael Rosner of Charlotte, N.C., found the possible connection between CFIDS/fibromyalgia and spinal cord compression in the process of diagnosing and treating a physician who was disabled by CFIDS. He agreed that it's premature for patients to start seeking diagnosis and treatment from their local neurosurgeon because awareness of the possible connection between the condition (absent the actual herniation of the cerebellar tonsils) and CFIDS/fibromyalgia is still low. Research is just beginning to be published on this topic.

"The real diagnostic clue is anything that signals neurological impairment-abnormal reflexes, tingling in both arms or both legs, shooting pain, urinary frequency, inability to stand on one foot, ataxia (coordination problems), dropping things out of the hands," Rosner said.

Fatigue and pain alone are not enough to suggest this condition, he said. In fact, before he became aware of CFIDS through that disabled physician, he would have dismissed someone who complained of being tired all the time. Now, he interviews the patient to find out the range of symptoms and what set them off.

"When you hyperextend the neck backward," Dr. Rosner explained, "the spinal canal narrows. This happens in the case of whiplash in an automobile accident, extended dental work in which the head is bent back, coughing severely for an extended period of time, even something like painting a ceiling." Interestingly, the surgery in breast implantation requires the head to be positioned backward while the patient is unconscious and unaware of any pain in the neck. At the same time, Rosner said, blood pressure and oxygen delivery to the spine and brain stem is lower.

In a paper expected to be published in May 1999 in the journal, Neurology, Dr. Thomas Milhorat of the State University of New York in Brooklyn reports his experience with Chiari and related spinal compression. Of 364 Chiari patients he surveyed, nearly 60% had a prior diagnosis of fibromyalgia, 12% of chronic fatigue syndrome, 31% migraine or sinus headache, 9% multiple sclerosis and 63% physiciatric malingering (some had more than one prior diagnosis). In another study, Dr. Rosner reported that 20% of the fibromyalgia patients he examined had cervical compression.

Of greatest interest to patients with CFIDS and/or fibromyalgia, however, is a study funded by the NFRA to determine the percentage of people diagnosed with fibromyalgia who also have the Chiari malformation or spinal cord compression. This study will involve 105 newly diagnosed fibromyalgia patients, 30 of whom will be matched by age and sex with 30 healthy controls. Each will be given an extensive neurological examination. MRI scans, done according to Dr. Rosner's specifications, will all be read "blind" by a radiology clinic in Charlotte.

Preliminary results should be presented and discussed in September at an NFRA research meeting. Dr. Rosner, who will chair that meeting, will present data from his own clinical experience, as well.

Other research linking Chiari and cervical stenosis to fibromyalgia is being submitted to the American College of Rheumatology for possible presentation at its upcoming meetings.

The National Fibromyalgia Research Association raises funds for fibromyalgia research. For information, send a self-addressed, stamped envelope to P.O. Box 500, Salem, OR 97308.

Reprinted with permission from The CFIDS Chronicle, Vol. 12, No. 3. May/June 1999.

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