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Several years ago Dr. Banner, a family physician, was diagnosed with CFS. In his quest to restore his health he learned of Dr. Rosner, a neurosurgeon at Park Ridge Hospital in Hendersonville, N.C., who performs operations on patients with a neurological condition called Chiari malformation and/or cervical spinal stenosis. The former condition is caused by pressure on the brain stem and spinal cord whereas the latter is present when the spinal canal appears normal but is in fact too narrow for the spinal cord. Dr. Banner noted that he experienced many symptoms identical to those reported by the patients Dr. Rosner was treating and ordered an MRI on himself. His hunch proved fruitful; the MRI showed that he had narrowing of the same variety as the patients Dr. Rosner was effectively treating through surgery.

Symptoms from these conditions rarely develop before adulthood and include muscle weakness, chronic fatigue, speech impairments and irritable bowel syndrome and are aggravated by exertion much like CFS and FMS symptoms. In cases where the compression grows more severe with time and age, symptoms appear gradually. However, when symptoms are triggered by physical trauma such as whiplash, surgery that involves hyperextending the neck (like during breast implant surgery), or prolonged coughing, they can appear suddenly. CFS and FMS patients share this sentiment and often report that their symptoms appear out of the blue; one day they enjoyed good health and the next they were bed ridden by a debilitating disease with no known cure.

Although patients with Chiari malformation and cervical spinal stenosis share many of the same symptoms that CFS and FMS patients report, there are more factors to evaluate before considering surgery. Dr. Rosner states that “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) and dropping things out of the hands.”

Dr. Banner presented his research and medical history to Dr. Rosner, who operated on him two days later. The treatment consists of surgery to remove bone from the skull and/or cervical (top seven) vertebrae in order to expand the space available for the brain stem and spinal cord. Dr. Banner experienced an amazing recovery prior to surgery. His promising results prompted the doctors to look into the possible connection between neurological abnormalities and CFS and FMS.

Dr. Dan S. Heffez, director of neurovascular surgery at the Chicago Institute of Neurosurgery and Neuroresearch, joined Dr. Rosner in investigating surgery as a treatment option for patients with CFS and FMS. “This could very well be a very big breakthrough for millions of people,” Heffez told Dr. Johnson on “20/20.” During a live chat session, Dr. Heffez advised those interested in looking into surgery as a treatment option that, “The first step is to find a neurologist or a neurosurgeon who will do a careful examination for you. Then if appropriate, when the examination is abnormal, you will need to get an MRI scan of your cervical spine and brain…any radiologist should be able to interpret these scans correctly.”

Since the initial medical breakthrough numerous studies have been conducted. In one study Dr. Rosner reported that 20% of the FMS patients he examined also suffered from cervical compression. Dr. Thomas Milhorat of the State University of New York in Brooklyn surveyed 364 Chiari patients and found that close to 60% of them had a prior diagnosis of FMS and 12% of them had been diagnosed with CFS.

Preliminary research appears to suggest that this procedure is without fault but doctors stress that FMS and CFS patients must exercise caution. The surgery has been used for decades to treat clear-cut cases of Chiari malformation and cervical spinal stenosis but the link between FMS and CFS is a relatively new discovery and additional studies are needed to assess safety and effectiveness of surgery as a treatment option.

Dr. Johnson cautions that “the surgery must be considered experimental. No one yet knows the long-term results or which patients might benefit most. The results of these surgeries must be published and examined by others. This has not yet happened.”

Dr. Heffez monitors his patients post treatment and reported that based on following patients for a year after surgery, his track record shows that “88% of the surgeries resulted in a meaningful improvement to the patient.”

“We’re very hopeful 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 in order to determine the percentage of FMS patients who have Chiari malformation or spinal cord compression. The study will involve 105 recently diagnosed FMS patients, with 30 matched by age and sex and 30 healthy controls. Participants will be given an extensive neurological examination to assess and determine their neurological health. Exams will include MRI scans conducted according to Dr. Rosner’s guidelines and read by a “blind” radiology clinic in Charlotte.

CFS and FMS patients have a vested interest in the study and results will be discussed at NFRA research meetings. Additional research linking CFS and FMS to Chiari malformation and cervical spinal stenosis is being submitted to the American College of Rheumatology to undergo review and evaluate the findings for presentation at future meetings.

Sources: Hoh, David. “Closing in on Treatment for CFIDS/FM: Spine, Skull Surgery May Help Many With CFIDS.” The CFIDS Chronicle, Vol. 12, No. 3. May/June 1999. Dr. Johnson, Timothy. “Can Surgery Cure Chronic Fatigue?” March 2000. ABC news.