A cure for fibromyalgia? Hardly. If you've been intrigued by recent reports that surgery is the answer, read this. Before you make a move, you need the full story.

There's no doubt that many people with fibromyalgia are desperate to find relief.

The condition is poorly understood, often confused with chronic fatigue syndrome and even considered by some doctors to be a purely psychological "non-condition."

So it's no wonder that the fibromyalgia community was galvanized when they heard some neurosurgeons say that brain or spine compression might be a cause -- and that cutting away part of the skull and spinal column might be the cure. This seemed to offer real hope, and sent many people rushing to get the imaging tests known as MRIs, anxious to see if they are candidates for brain surgery. They have flooded the few neurosurgeons performing this procedure with thousands of MRIs and phone calls.

But for almost all people diagnosed with fibromyalgia, brain surgery is a false hope, say fibromyalgia experts.

"People are being misled by the media about this radical treatment," says Don Goldenberg, MD, of Wellesley, Mass., an internationally-respected fibromyalgia expert who is critical of the surgery, the surgeons who promote it and the media who have spread misinformation about it.

Robert Bennett, MD, a fibromyalgia expert at Oregon Health Sciences University in Portland, agrees. "Too many people with fibromyalgia are hearing in the media that this is a breakthrough, and having unrealistic hopes for a cure."

The facts: Structural abnormalities known as Chiari (pronounced "kee-ar-ee") malformation or cervical (neck) spinal stenosis can put pressure on the brain or spinal canal and cause a number of neurological problems.

A few symptoms, such as headaches, dizziness, fatigue and muddled mental processing, are similar to symptoms that affect people with fibromyalgia. (See "Have You Been Misdiagnosed?" ) And the neurological conditions often show up after a head or neck injury, which is similar to the onset of fibromyalgia.

Doctors agree it's true that a few people diagnosed as having fibromyalgia have been misdiagnosed, and that some actually have a brain pressure problem instead. But there is no scientific evidence that fibromyalgia -- or chronic fatigue syndrome, which is often grouped with fibromyalgia -- is a neurological condition caused by structural defects that compress the brain, or that "brain decompression" surgery will ease the symptoms of fibromyalgia.

In fact, a study that is not yet published looked for Chiari malformation and cervical spinal stenosis in fibromyalgia patients, and found there were at least as many signs of skull and spine abnormalities among the control group, which was made up of totally healthy and asymptomatic people.

Chiari: Nothing New
The Chiari connection with fibromyalgia surfaced only recently, but surgery for Chiari malformation isn't new or controversial: The procedure has been used for more than 50 years to correct brain compression and relieve neurological problems.

Chiari malformation (named for the doctor who identified it) is a very rare condition in which the skull squeezes part of the back of the brain -- called the tonsils of the cerebellum -- down into the spinal canal, partially blocking the flow of cerebrospinal fluid (CSF). It is probably present at birth, but shows up in adult years, often after a neck or head trauma, such as a whiplash or prolonged distortion of the neck as during dental work or surgery.

A similar, not-so-rare condition called cervical spinal stenosis is a compression or narrowing of the spinal canal in the neck. Many things, including osteoarthritis of the spine or an injury like whiplash, can cause this compression.

The conditions became connected with fibromyalgia a few years ago, when Sam Banner, MD, a doctor diagnosed with chronic fatigue syndrome, discovered that neurosurgeon Michael Rosner, MD, of the University of Alabama at Birmingham (UAB), was operating on people with symptoms that sounded a lot like his -- and getting positive results. He contacted Dr. Rosner, who found neurological abnormalities in Dr. Banner that were confirmed by an MRI.

Dr. Banner had the surgery, his symptoms improved, and he enthusiastically spread word of the treatment. Dr. Rosner and others gave talks at meetings of fibromyalgia and chronic fatigue groups, and soon the "breakthrough" was being hyped on hundreds of Web sites.

Stories of a few enthusiastic patients who had been "cured" by surgery appeared on the front page of the Wall Street Journal, where Chicago-based neurosurgeon Dan S. Heffez, MD, who also performs the surgery, was quoted comparing it to the discovery of insulin. Major stories soon followed on television's Dateline and 20/20.

A Hullabaloo -- Lawsuits, too
Many doctors are outraged that brain surgery is being suggested in connection with fibromyalgia. The controversy has caused a hullabaloo that has led to lawsuits, angry splits in the medical community and bitter academic infighting. Dr. Rosner left UAB and is now in private practice in Hendersonville, N.C.

Two professional medical organizations have taken a firm stand against misuse of the procedure: Both the American College of Rheumatology (ACR) and the American Academy of Neurologic Surgeons (AANS) have issued position statements cautioning physicians against skull or spinal canal surgery for fibromyalgia or chronic fatigue syndrome.

Dr. Rosner says some of the controversy comes from misunderstanding. He says he never claimed compression problems cause fibromyalgia. Rather, he says, some people with fibromyalgia may have been misdiagnosed. "If they have Chiari malformation or spinal stenosis, then they don't have fibromyalgia or chronic fatigue," he says. "And this surgery may help."

Dr. Rosner, who says he's performed more than 200 of these surgeries, estimates that about 25 percent of those he has treated for Chiari had originally had an incorrect diagnosis for fibromyalgia.

Dr. Heffez says he has performed more than 150 surgeries on people originally diagnosed with fibromyalgia. Fibromyalgia is a difficult diagnosis to make. And most people with fibromyalgia are not carefully evaluated by a neurologist for neurological problems or structural abnormalities, says Dr. Heffez. Until there is a better awareness of the possibility for misdiagnosis, people with fibromyalgia should have an MRI, he says.

Until a few months ago, there was a notice on Dr. Heffez's clinic Web site inviting people with fibromyalgia to send him MRIs, and he says he has received nearly a thousand of them to review.

But other neurologists say diagnosis based on MRIs can be a tough call. How much does a spine or brain have to be compressed to cause a problem? And even if a Chiari malformation is found, it doesn't mean anything in itself, because it is known that people can have Chiari malformations and have no neurological problems whatsoever.

Several rheumatologists say it is possible that a very small percentage of people with fibromyalgia may have been misdiagnosed. It's estimated that .05 percent of people in the general population have a Chiari malformation. That means maybe 25,000 people with fibromyalgia in the United States could have this defect -- and many go through life with no symptoms at all, says Dr. Bennet.

"It requires a very careful review of symptoms and neurological findings to pick out those who could potentially benefit from decompression surgery," says Dr. Bennett.

Spinal compression could co-exist with fibromyalgia and aggravate the symptoms, just as osteoarthritis or trauma does, says Daniel J. Wallace, MD, a rheumatologist and expert in treating fibromyalgia in Los Angeles. "But it's not a cause."

But the message patients seem to be hearing is that surgery could cure fibromyalgia. With all of the inaccurate publicity, many doctors are concerned that those desperate for a cure will find a surgeon willing to do the surgery -- whether they need it or not.

Full Recovery Impossible
This procedure is serious: The risks from the surgery include the slight but real possibility of brain damage, stroke and paralysis, says John Oró, MD, a neurosurgeon at the University of Missouri who is conducting a study on the outcomes of Chiari surgery.

In Chiari surgery, a cut is made down the back of the neck from the base of the skull to the second cervical vertebrae, and the neck muscles are pulled aside. Then a small crescent of bone is cut out of the skull. Any brain tissue bulging into the spinal canal may be gently "shrunk" with a heating tool.

In surgery for spinal canal compression, surgeons cut away bone from one or more vertebrae to enlarge the opening. With either surgery, a "patch" may be sewn into the tough membrane covering the spinal canal, to enlarge it.

Activity is severely limited for a month, with no straining or lifting, and recovery from the surgery can take a year and can be painful. "It hurts like hell," says Dr. Rosner. "And you're not going to have a normal life afterward." You will be forever fragile -- because your skull will be missing some bone -- and you won't be free of all your symptoms.

Dr. Heffez agreed: "Full recovery is not possible. This is not a cure," he says. This surgery "takes an abnormal structural situation and improves it, but it does not completely correct it."

For those with serious neurological problems caused by spinal compression, any improvement may be worth it. However, all patients who have the surgery aren't helped -- or happy. Dr. Bennett knows four patients with fibromyalgia who had the surgery: One was made worse, one remained the same, and two improved in terms of headaches, mental clarity and fatigue -- but not in terms of pain, he emphasized. Dr. Rosner agreed: "This operation is not going to relieve fibromyalgia pain."

The Possibility of Misdiagnosis
It's natural to wonder if you have been misdiagnosed when you have a condition as vague as fibromyalgia.

"The best advice is to have an expert neurological exam performed. And if that is normal, then forget about going further," says Daniel Clauw, MD, a rheumatologist at Georgetown University in Washington, D.C. and critic of the surgery.

What if the doctor misses the signs? Shouldn't you have an MRI to see if there is spinal cord compression?

"It's a mistake to go that route," says Dr. Clauw. "We know that a significant number of the population has a Chiari malformation or spinal stenosis and has no neurological symptoms. If you don't have any of those symptoms, it doesn't matter what your MRI shows."

(An MRI, incidentally, can cost between $800 and $3,000 and may not be covered by insurance if there is no medical reason for ordering the test.)

You should only consider this surgery if you have abnormal neurological findings on physical examination, and if these findings can be correlated with abnormalities on an MRI of the base of the skull and/or neck. "The promise of surgery is a false hope to the overwhelming majority of fibromyalgia patients," says Dr. Wallace.

Judith Horstman is a contributing editor to Arthritis Today.