For years, millions of Americans suffering from either fibromyalgia or chronic fatigue syndrome, two illnesses that can leave people in too much pain or too tired to lead productive lives, have been searching for an antidote. Complementary therapies such as massage and acupuncture have helped many, as have steady regimens of nutritional supplements and gentle or "graded" exercise programs.
In recent months, however, radical surgical procedures have been in the news, raising hopes among those who suffer from these debilitating conditions. The operations, in which the surgeon removes a portion of the lower rear skull, or widens the spinal column at the neck, are not new. Neurosurgery, as a treatment for either fibromyalgia or CFS, is very new, however.
Some Say a Too-Big Brain May Be Cause for Concern
Chiari syndrome and spinal stenosis are well known to surgeons. Chiari syndrome, in particular, was recognized a century ago. It is a congenital malformation in which the rear skull, or occipital bone, stops growing prematurely before birth, but the cerebellum, or lower portion, of the brain, continues to grow. As a result, the cerebellum is literally squeezed onto the top of the spinal canal.
At some point, usually after adolescence or an instance of physical trauma, symptoms may emerge, including dizziness, neck pain, severe headaches, and tingling in the arms and legs.
Spinal stenosis, an abnormal narrowing of the spinal column, can cause similar problems.
For decades, doctors considered both conditions to be rare. Then, an Alabama doctor, ill with chronic fatigue syndrome, became convinced his symptoms might be related to Chiari malformation. When a local surgeon performed the skull decompression surgery on him in 1995 and his symptoms improved, he and the surgeon, Dr. Michael Rosner, realized there might be hope for others.
Since then, several hundred operations have been performed by Dr. Rosner in Hendersonville, N.C., Dr. Dan Heffez at Chicago's Institute of Neurosurgery & Neuroresearch, and Dr. John Weingart at Johns Hopkins, on people who have been diagnosed with either fibromyalgia or chronic fatigue syndrome.
These procedures, however, have come under fire. Opponents believe the surgeries may be draconian, especially in the absence of controlled studies. Early this year the American Association of Neurological Surgeons issued a statement that it does not "recognize" the kinds of surgery Rosner, Heffez, and Weingart are performing as a treatment for chronic fatigue syndrome, and noted that there are "definite risks" associated with the procedures.
Certainly, not all fibromyalgia and chronic fatigue patients fit the neurological profile for Chiari syndrome or spinal stenosis, conditions that are diagnosed with the help of MRI scans.
Chicago surgeon Heffez has stated that a study to determine the number of patients diagnosed with fibromyalgia or chronic fatigue syndrome who are also bona fide sufferers of Chiari malformation or spinal stenosis is a priority right now. Nevertheless, Heffez, in particular, insists that just eight percent of the patients he has operated on have failed to realize some benefit from the surgery, and that none have been harmed.
Dr. Charles Lapp, a Charlotte, N.C. internal medicine specialist who treats patients with CFS and fibromyalgia, agrees with Heffez that more research needs to be done. "What concerns me is that these surgeons are saying they're getting good recovery rates, and we're not seeing that at all," Lapp says. Six of Lapp's fibromyalgia patients have undergone the surgery, with poor results. "They came back to me six months after surgery, and they were every bit as sick," the doctor notes. On the other hand, Lapp says, "I'm cautiously optimistic that there may be a small subset of these patients who would benefit."
Dr. Keith Berndtson, who relies on integrative medical therapies to treat chronic fatigue syndrome and fibromyalgia at Chicago's WholeHealth complementary care clinic, is similarly cautious. "Is there a subset of patients with CFS or fibromyalgia whose symptoms are in total or in great part accounted for by brain stem or cervical cord compression? It's an intriguing hypothesis," he says, "But I think I'm on safe ground to say that at most this probably applies to a small fraction of patients. You have to make every effort to treat the problem more conservatively, because there is no guarantee that what's being read on an MRI scan as Chiari is really the cause of the symptoms."
Complicating matters, the new surgery raises the question of whether fibromyalgia and chronic fatigue syndrome are interchangeable diagnoses, as some have presumed. Both syndromes have overlapping symptoms--most especially debilitating fatigue, but it may turn out that the new surgery is more beneficial for fibromyalgia patients. Fibromyalgia is characterized by all-over body pain, whereas CFS is defined, at least in part, by the presence of flu-like symptoms such as sore throat, fever, and tender lymph nodes.
"I don't see how a structural compression problem would be related to recurrent flu like symptoms, which is one of the hallmarks of the CFS case definition criteria," says Berndtson.
The doctor's colleague in the Chicago clinic, Dr. Mark Michaud, reports that his fibromyalgia patients have chosen to forego the surgery, "(S)ince they're reasonably stable with the alternative methods."
He adds, "I, too, am concerned because you really have no guarantees that surgery will be effective. Sometimes patients have come in and said, 'I've heard there's surgery for fibromyalgia.' You have to say, 'It's not for fibromyalgia per se, it's for people with a condition known as Chiari malformation.' And when you describe the surgery, they're much more reluctant to go for it."
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