Raging Fibromyalgia Controversy: Could Symptoms Stem From Neck and Brain Abnormalities?
March 18, 2002
The use of cranio-vertebral decompression surgery to treat fibromyalgia
(Issue: April, 2001)
Patients with fibromyalgia or chronic fatigue syndrome continue to flock to a small group of neurosurgeons in the hope that surgical treatment of brain and cervical spine abnormalities might bring relief from their onerous symptoms.
Desperate for a "cure," these individuals have literally been mailing in their magnetic resonance imaging (MRI) scans to these surgeons to see if neural compression related to cervical spinal stenosis or Chiari malformation might lie at the root of their problems. (Chiari malformation is a congenital abnormality in which two segments of the brain, the brainstem and cerebellum, bulge into the spinal canal through the foramen magnum, potentially causing neural compression and symptoms.)
The notion that treatable brain and neck problems could be the cause of fibromyalgia or chronic fatigue syndrome may be the single most controversial notion in two syndromes shrouded in controversy. Though hundreds of patients with fibromyalgia or chronic fatigue syndrome have opted for cranio-vertebral decompression surgery, the American Association of Neurological Surgeons (AANS) has publicly disavowed this form of surgery for chronic fatigue and related disorders. (See AANS Position Statement. 2000.)
A new study may further dampen patients' enthusiasm for a surgical solution. Georgetown University rheumatologist Daniel Clauw, MD, et al. recently compared the MRI scans of fibromyalgia patients and asymptomatic control subjects to see if brain and cervical abnormalities were more common in symptomatic individuals. They were not. "If anything, there were more abnormalities in the control group," said Clauw.
This would appear to put one popular notion to rest. "It is not possible to identify surgical candidates on the basis of an MRI scan," acknowledged neurosurgeon Michael Rosner, MD, a co-author of the study and one of the small group of neurosurgeons mentioned above. "You cannot tell, based on MRI scans alone, who does and does not have fibromyalgia-like symptoms, painful myelopathy, or anything else," Rosner adds.
Clauw and Rosner presented study results at two separate sessions of the annual meeting of the American College of Rheumatology in Philadelphia. (See Clauw et al. [a], 2000; and Clauw et al. [b], 2000.)
Surprise Neurological Findings
Unfortunately, this study will not resolve all the controversy surrounding this issue. Another aim of the study was to see if fibromyalgia sufferers might have an increased number of abnormalities on neurological examination. And indeed they did. The study found that fibromyalgia sufferers had five times as many neurological abnormalities as control subjects. This was a surprise, because there is a general notion across medicine that patients with fibromyalgia have normal physical exams, apart from elevated levels of tenderness.
The continuing controversy lies in varying interpretations of these neurological findings. Neurosurgeon Rosner believes many of the neurological abnormalities on clinical examination represent compression syndromes related to cervical stenosis and Chiari malformation. He asserts that the combination of neurological and MRI abnormalities can help identify patients who would benefit from neurosurgery, including many of the fibromyalgia patients in this study. "If you can identify compressive syndromes, I think it is important that they be pursued," said Rosner.
"I don't think fibromyalgia is a good explanation for abnormalities of gait, clonus, Babinski responses, and related long-track findings," said Rosner. "The frequency of some of those abnormalities was shocking to everyone involved in this study."
Or Incidental Findings?
His co-authors, however, point out in the abstract of the study that the neurological abnormalities could have many explanations besides structural compressive lesions. Chronic pain and suffering may have affected motor performance and other physical responses in the subjects with fibromyalgia. Fibromyalgia sufferers could also have abnormal reactions to testing procedures. Clauw et al. would like to see further scientific studies clarify the meaning of these results.
Clauw said that he believes that most of the abnormalities identified in the study are simply incidental findings and not surgical indications.
"I am convinced that the overwhelming majority of individuals we have labeled with fibromyalgia and chronic fatigue syndrome don't have a surgical problem," said Clauw. "And I think this study bears that out."
Clauw believes that there may be a very small subset of individuals who have been mislabeled with fibromyalgia, but who actually suffer from Chiari malformation, cervical stenosis, or both. "We would like to design future studies that might identify these individuals," he said.
Tsunami of Interest
The tidal wave of interest in this area was set in motion several years ago by anecdotal reports that some individuals with fibromyalgia or chronic fatigue syndrome suffer from neural compression syndromes in the head and neck.
"A new belief among a few neurosurgeons is that these patients' troubles can stem from a squeezing of the brain or spinal cord by a too-tight skull or spinal canal," noted an article by Thomas Burton in the Wall Street Journal. "For about $30,000 a case, they are drilling and snipping away bone from the backs of people's skulls and spines to `decompress' their brains, spinal cords, and central nervous systems." (See Burton, 1999.)
The putative indications for such surgery included evidence of Chiari malformation, cervical spinal stenosis, or both on MRI; an abnormal neurological examination; and fibromyalgia-like symptoms.
Though the symptoms of Chiari malformation and cervical spinal stenosis may have some broad overlap with the pain, tenderness, and fatigue of fibromyalgia/ chronic fatigue syndrome, there is scant scientific evidence directly linking these syndromes to any underlying medical condition, including these brain and neck abnormalities. And there is no scientific evidence, in terms of published trials, that decompressive surgery of the head or neck can effectively relieve fibromyalgia or chronic fatigue syndrome.
Recently, the National Fibromyalgia Research Association funded a study to determine the prevalence of Chiari malformation, cervical spinal stenosis, and neurological abnormalities in both fibromyalgia sufferers and asymptomatic control subjects.
Clauw et al. studied 39 newly diagnosed, consecutive patients from two specialty clinics who satisfied the American College of Rheumatology criteria for fibromyalgia, as well as a control group of 23 gender-matched asymptomatic hospital workers.
"All subjects completed symptom questionnaires, had an extensive neurological examination, and underwent MRI of the posterior fossa and cervical spine," according to the researchers. Two blinded radiologists evaluated each scan.
The study found no evidence of an increased prevalence of spinal stenosis in the fibromyalgia group. "There were no consistent differences between groups in the mean diameter of the spinal canal or in the number of individuals who would be judged to have stenosis at any cervical level," according to Clauw et al.
There was abundant evidence of Chiari malformation in both groups. Eight of 26 fibromyalgia patients with adequate imaging scans had evidence of cerebellar tonsillar herniation in the posterior fossa (i.e. bulging of the cerebellum into the spinal canal), However, so did 11 of 15 asymptomatic control subjects.
Few scientific studies have performed comprehensive neurological examinations on patients with fibromyalgia. In the study by Clauw et al., a neurosurgeon trained three rheumatologists in the performance of a lengthy and detailed neurological examination. "The examination took approximately 40 minutes to complete, and included comprehensive sensory, motor, cranial nerve, spinal, and reflex evaluations," according to the study authors. A single blinded observer then summarized the results of these examinations as normal or abnormal.
Surprisingly, the patients with fibromyalgia were much more likely to have an abnormal examination than the control subjects. Patients with fibromyalgia were more likely to have abnormal motor (53% abnormal vs. 0% of controls), reflex (31% abnormal vs. 10% of controls), gait (33% abnormal vs. 15% of controls), and sensory (23% abnormal vs. 5% of controls) examinations.
The researchers attempted to correlate the abnormal neurological examinations to imaging findings, but could find no obvious relationship between the abnormal neurological examination findings and anatomic abnormalities in the neck or brain.
Disagreement on the Significance Of the Findings
The researchers could not agree on the significance of the neurological abnormalities. Rosner, as mentioned above, found the abnormalities to be ominous. "Could these neurological abnormalities be related to the MR exam findings?" Rosner asked. "The answer in the majority of cases was yes. Basically the findings were consistent with long-track involvement in the majority of patients."
He believes that the combination of abnormal imaging results and an abnormal neurological examination may identify a substantial group of fibromyalgia sufferers whose symptoms stem from compressive lesions--and who may benefit from surgery.
Clauw, on the other hand, observed that most of the fibromyalgia patients had only mildly abnormal examinations, and that the significance of these results was uncertain.
"Those of us in clinical practice who see a lot of fibromyalgia patients would have a tendency to minimize the importance of some of these findings," said Clauw. He noted that it is not clear how best to define "normal" and "abnormal" neurological findings in this group.
As mentioned above, the study abstract pointed out that the abnormal findings in the patients with fibromyalgia could stem from several sources: (1) structural or compressive lesions; (2) an effect of pain on motor performance and balance; (3) a "hyper" reflex response secondary to hypervigilance; or (4) hyperalgesia/allodynia. "Further studies will be necessary to determine the precise mechanism(s), and the appropriate diagnostic paradigms, for individuals with symptoms of fibromyalgia and an abnormal imaging examination," Clauw et al. noted.
All the researchers did agree on several issues. The study was too small to observe minor differences in the prevalence of Chiari malformation or cervical spinal stenosis between patients with fibromyalgia and controls. They also agreed that these results, culled from patients in a tertiary care setting, cannot be extrapolated to other clinical settings. "Larger studies are necessary to help address this complex issue," the authors concluded.
Advice for Patients With Fibromyalgia
Patients with fibromyalgia or chronic fatigue syndrome may be confused by the conflicting claims about the relationship of these syndromes to cervical spinal stenosis and Chiari malformation. Clinicians might do well to point out the following:
1. There is no direct evidence linking cervical spinal stenosis or Chiari malformation to fibromyalgia or chronic fatigue syndrome.
2. The major professional societies in rheumatology and neurosurgery have not endorsed the notion that the symptoms of fibromyalgia or chronic fatigue syndrome stem from anatomic abnormalities.
3. There is no published evidence, or unpublished controlled trials, demonstrating that surgical decompression can relieve the symptoms of fibromyalgia or chronic fatigue syndrome.
4. Imaging scans cannot distinguish symptomatic from asymptomatic cases of cervical spinal stenosis and Chiari malformation
5. It is not clear how best to interpret abnormalities on neurological examination in patients with fibromyalgia or chronic fatigue syndrome. It is possible that some results may reflect evidence of neural compression. But others may not. Further scientific studies will be necessary to clarify the significance of abnormal results.
The Furor Over Cervical Stenosis, Chiari Malformation, And Fibromyalgia: A Sampling of Opinion
Media Hype, Exuberant Claims, Medical Skepticism
"Tonight we have news of a medical breakthrough that could change the lives of millions of people, people who suffer from chronic fatigue syndrome or illnesses like it. Their lives often spiral downward as they go from doctor after doctor desperately seeking help. But now there is a radical new approach that is giving hope to some of these patients. Could surgery be the answer--perhaps a cure? Dr. Timothy Johnson is the bearer of promising news and success stories."--Barbara Walters, "20/20," March 10. 2000.
"Tonight on 20/20 I am reporting on a fascinating cutting edge development in medicine ... I refer to the truly radical--and controversial--suggestion that some of the five million to 10 million patients who have been labeled with chronic fatigue syndrome and/or fibromyalgia may actually have a central nervous system abnormality that can be treated with surgery."--Timothy Johnson, MD, ABC News. (See abcnews.com/sections/ living/Dr.Johnson/drjohnson_3.html.)
"For some patients with chronic fatigue and immune deficiency syndrome and fibromyalgia, the crux of their problems may be all in the backs of their heads."--David Ho, Editor, CFIDS Chronicle. (See Hoh D. Spine, skull surgery may help many with CFIDS, FMS, 1999, www.co-cure.org/chiari.htm.)
"We're looking at this as a subset of patients. Fibromyalgia and chronic fatigue syndrome may be many diseases, but clearly there is a big chunk of [patients] who may be surgical candidates."--Neurosurgeon Michael Rosner, MD, quoted in CFIDS Chronicle. (See Hoh D, Spine, skull surgery may help many with CFIDS, FMS, 1999, www.co-cure.org/chiari.htm.)
"This is like telling the story of the discovery of insulin. You're talking about a completely new insight about a condition that has baffled people since the beginning of the modern world."--Neurosurgeon Dan S. Heffez, MD, quoted in the Wall Street Journal (See Burton TM, Some doctors operate on people diagnosed with chronic fatigue, Wall Street Journal, November 11, 1999.)
"My feeling is that Rosner and Heffez are moving way too rapidly.--Rheumatologist Daniel Clauw, MD, quoted in the Wall Street Journal. (See Burton TM, Some doctor's operate on people diagnosed with chronic fatigue, Wall Street Journal, November 11, 1999.)
"While this news has excited many patients to seek further evaluation from rheumatologists and neurosurgeons alike, it should be noted that a causative association and need for neuroradiologic imaging or surgery is hypothetical and highly speculative."--Rheumatologists John J. Cush, MD, and Robert Spiera, MD, American College of Rheumatology Hotline. (See Cush JJ and Spiera R, A surgical cure for fibromyalgia and chronic fatigue? Reaction to an ABC News "20/20" report, ACR Hotline, April 13, 2000; www.rheumatology.org/research/hotline/fmsurgery.htm.)
"There is no scientific evidence that chronic fatigue syndrome is a neurological disorder or that it requires surgical intervention. Therefore the American Association of Neurological Surgeons (AANS) does not recognize the use of cervical decompression as a treatment alternative for chronic fatigue syndrome."--American Association of Neurological Surgeons Position Statement on the Use of Cervical Decompression for Chronic Fatigue Syndrome. (See www.neurosurgery.org/ aans/media/detail.asp?PressID=65.)
AANS. American Association of Neurological Surgeons (AANS) Position Statement on the Use of Cervical Decompression/or Chronic Fatigue Syndrome, March 14, 2000, www.neurosurgery. org/aans/media/detail.asp? PressID=65.
Burton TM, Some doctors operate on people diagnosed with chronic fatigue, Wall Street Journal, November 11, 1999:1.
Clauw DJ et al. (a), Neurological examination in individuals with fibromyalgia and relationship to MRI findings, presented at the annual meeting of the American College of Rheumatology, Philadelphia, 2000; as yet unpublished.
Clauw DJ et al. (b), Prevalence of Chiari malformation and cervical stenosis in fibromyalgia, presented at the annual meeting of the American College of Rheumatology, Philadelphia, 2000; as yet unpublished.
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