Many have seen the recent coverage on 20/20 and Dateline about CFS/FM patients having surgery that is traditionally done for the neurological conditions known as Chiari or Cervical Stenosis. Both conditions have been proposed as the cause of symptoms in a subset of patients with CFS or FM. In Chiari and Cervical Stenosis the brain stem or upper portion of the spinal cord is compressed, resulting in symptoms similar to FM and CFS. Chiari involves a malformation in which a portion of the cerebellum extends slightly down through the opening in the base of the skull, putting pressure on the brain stem and spinal cord. In Cervical Stenosis the spinal canal is too small for the spinal cord, though it appears normal. 

Symptoms often don't develop until adulthood and may be triggered by an injury. or surgery that involves extension of the neck (including breast implantation), extensive dental work, or prolonged coughing. Onset of symptoms can be sudden or gradual. NMH (neurally-mediated hypotension) may be a good marker, as well as other signs of neurological impairment: abnormal reflexes, shooting pain, tingling in the arms or legs, urinary frequency, coordination problems, etc. Diagnosis is usually made with a combination of MRI scan and neurological testing. 

The surgery expands the space available for the brain stem and spinal cord by removing bone from the skull and/or the cervical vertebrae. While it is not clear whether surgery can relieve all the symptoms associated with FM and CFS, some FM patients reported that their tender points completely disappeared. One study found that of 364 Chiari patients, nearly 60% had been diagnosed with FM, and 12% with CFS. Another doctor found that 20% of the FM patients he examined had cervical compression. 

Dr. Michael Rosner, a neurosurgeon in Hendersonville, NC, found the possible connection between FM, CFS and spinal cord compression. He stated, "This is not yet something we can tell people to run out and do. It will not be the answer for everyone." Dr. Dan S. Heffez, located at the Chicago Institute of Neurosurgery and Neuroresearch, has joined Dr. Rosner in investigating this surgery as a treatment option for patients with CFS and FMS. 

Local chiropractors encourage manipulation as a less invasive first step, including Jennifer Pettibone and Roger Clifford, both located in Dallas. 

A comprehensive list of internet resources is located at http://www.cfids.org/ research/chiari.html (link is no longer active but try http://www.cfids.org/about-cfids/chiari-malformation.asp). This includes transcripts of the 20/20 and Dateline television programs and the live chat that followed. Links are included to sites with general info, personal stories, chats, and discussion lists. Also check out http://www.pressenter.com/~chip/chiari.htm, particularly for doctor referrals. Lauri Hogle (featured on Dateline) has a site at http://www.hometown.aol.com/hogle5/myhomepage/faith.html (Link is no longer active). 

Sources: The Chronicle, May/June Ì99, The CFIDS Association of America, http://www.cfids.org/, 704 365-9755 & 800 442-3437, PO Box 220398, Charlotte, NC 28222-0398; also http://www.immunesupport.com/; and the CFSFMExperimental list. 

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