Melissa Kaplan's
Chronic Neuroimmune Diseases
Information on CFS, FM, MCS, Lyme Disease, Thyroid, and more...
Last updated January 1, 2014

Melissa Kaplan notes: Since the news on the CDC misappropriation of funds has hit the mainstream media, the mainstream media has been producing news stories related to CFS and FM. Unfortunately, they overhyped much of it, just as they did the whole Y2K thing. One of the “cure for CFS” stories was about some noteworthy research by a 16 year old student in Canada who found what appears to be a new marker for CFS – not a cure. Likewise, some news organizations picked up on the information underlying the following news article and touted it as a “cure” for CFS/FM. As with all such stories, read carefully between – and behind – the lines. Also unstated in this article is that there are many reasons for brain swelling (encephalitis, encephalopathy), ones than can be resolved with drugs rather than brain surgery. It should also be emphasized that only a fraction of those diagnosed with CFS and/or FM have the Chiari deformation.

CHICAGO -- Jozan Plaza, a 45-year-old Alabama woman, visited Chicago recently to have part of the back of her skull drilled off.

Was this a good idea?

Ms. Plaza is among the roughly eight million Americans diagnosed with a condition called fibromyalgia syndrome, which involves widespread muscle pain, sleeplessness, fatigue and depression. It is poorly understood and controversial. Many doctors aren't convinced it is a disease at all, suspecting that in some patients it is really depression with physical manifestations.

Patients who are told they have fibromyalgia -- or the closely related chronic fatigue syndrome -- are usually just prescribed sleeping pills, antidepressants and physical therapy. Treating patients with these diagnoses, in short, isn't brain surgery.

Except that at a handful of American hospitals, it now is.

Spinal Tap
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. 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.

"This is like telling the story of the discovery of insulin," says Ms. Plaza's Chicago surgeon, Dan S. Heffez. "You're talking about a completely new insight about a condition that has baffled people since the beginning of the modern world." He and two other doctors, one in Baltimore and one who recently moved to North Carolina, have operated on hundreds of such patients in all.

But other prominent doctors are aghast that such complicated and potentially dangerous operations are being offered to patients diagnosed with conditions they regard as primarily psychiatric in some instances. "Is this on a par with insulin? Not on your life," says Peter Carmel, neurosurgery chairman at New Jersey Medical School in Newark and an authority on the skull malformations at issue. "Would I offer a patient an operation the way they do? No."

Neurological Difficulties
Surgery proponents contend that these patients, mostly women, have been ignored or ridiculed by much of the medical profession, and as a result often don't get proper neurological exams and diagnoses. These proponents say the problem facing many such patients is a congenital skull malformation long recognized as causing neurological difficulties in a small number of people. It is called "posterior fossa compression" -- or, in a reference to the doctor who identified it, a Chiari malformation. The other condition that surgery proponents point to is a too-narrow spinal canal, called "cervical spinal stenosis."

This is what they are operating for, the surgeons say; they reject the notion that they use surgery to treat chronic fatigue syndrome or fibromyalgia.

But Dan Clauw, a rheumatologist at Georgetown University in Washington, contends that only an "extremely low percentage" of chronic-fatigue and fibromyalgia cases have such a neurological basis. He says his research group did magnetic resonance imaging of the skull and spine in 28 fibromyalgia patients and 14 other people and found "no difference in the MRIs between the fibromyalgia group and the control group." At the very least, he says, a controlled clinical trial should be done before subjecting hundreds of patients to highly invasive surgery.

The pioneer of the surgery, Michael J. Rosner, says that he plans to publish a medical-journal article on the topic. "Unless you're looking for this or you have a high degree of suspicion, you say there is nothing wrong with the patient," he says. "I don't operate on somebody who doesn't have an abnormal exam."

A case that proved a big spur to his surgery involved a patient who was himself a doctor. Sam Banner, a family practitioner with a storefront office in Dothan, Ala., was diagnosed with chronic fatigue syndrome in 1989. He found himself so weak and tired he could no longer practice medicine, so he took a desk job reviewing workers' compensation claims for a local manufacturer. In that job, he noticed that lots of spine and skull surgery was being done by Dr. Rosner at the University of Alabama in Birmingham.

The purpose was to alleviate pressure on the lower part of the hind-brain, known as cerebellar tonsils. It is well established that these organs can be packed too tightly and that, in rare cases, this causes neurological problems: patients may have severe pain or numbness in the arms, severe difficulty concentrating, or wildly exaggerated reflexes and a wobbly gait.

Dr. Rosner, a prominent surgeon who had already helped transform accepted treatment of head trauma, began doing skull surgery on patients who didn't meet classic definitions. For instance, he concluded that the cerebellar tonsils didn't need to be forced several millimeters below the base of the skull to cause trouble, but could do so just by squeezing against the spinal cord.

Dr. Banner implored Dr. Rosner to do an MRI on him. Dr. Rosner did, concluding Dr. Banner had a too-tight spine that squeezed his spinal cord. On learning there might be a physical cause for his problem, says Dr. Banner, "I went to the chapel at the university and got down on my hands and knees and thanked God."

Dr. Rosner did a spinal operation called a laminectomy in 1995, and afterward, Dr. Banner, feeling very much better, became something of a crusader. He named his office the Nathanael Medical Center -- "Nathanael" translates loosely from Hebrew as "gift from God" -- made fibromyalgia and chronic-fatigue a part of his practice, and organized a support group for sufferers. He took out newspaper and Internet ads telling sufferers there might be hope for their hitherto intractable conditions.

Many people who came to him had been seen many times by rheumatologists, neurologists, radiologists and assorted other -ologists. "If you go into a doctor's office and tell them you're tired or you hurt all over, they don't want to hear about it," Dr. Banner says. When such people were examined, he says, 50% to 80% turned out to have cranial or spinal malformations.

He began referring them to Dr. Rosner, who says he operated on about 90 of about 300 patients sent. Insurance generally covered the surgery because Dr. Rosner didn't diagnose their problems as fibromyalgia or chronic fatigue syndrome; he regarded them as having Chiari malformations or cervical spinal stenosis.

Success Story
Several of Dr. Rosner's patients say they were disabled and miserable beforehand, even unable to walk, and dramatically improved afterward. Stephanie B. Ash, who had been diagnosed with chronic fatigue syndrome, says she saw Dr. Banner on a local TV show and got far better after surgery. "The Lord led me to watch television that morning," says the Dothan resident.

Not everybody was so thrilled. Four patients sued Drs. Banner and Rosner and the University of Alabama at Birmingham health-services foundation, claiming unnecessary surgery was done on them at UAB. Some asserted, in Houston County, Ala., Circuit Court, that their symptoms had worsened. One said she developed meningitis.

Doctors complained, too. Other doctors in Dothan who saw some of these same patients before and after surgery concluded that some operations were unnecessary and unhelpful.

One such doctor is D. Bruce Woodham, a neurosurgeon who saw a patient, Donna McCord, in 1996 after surgery by Dr. Rosner. Dr. Woodham wrote to Dr. Rosner that Ms. McCord was doing poorly.

"I would consider her a failure in her series as she has exactly the same symptomatology she had prior to her surgery and now she is on disability," he wrote. "The patient states that her life is a wreck ... she states that she is really not any better off." Lawsuits by Ms. McCord and two other patients against UAB and Dr. Rosner have been settled; Dr. Banner won summary judgment in the three patients' suits against him. The fourth suit was withdrawn.

Protest Letter
Three years ago, Dr. Woodham wrote a letter, signed by 13 other Dothan doctors, to UAB's neurosurgery chairman expressing concern about an "inordinately high" number of operations for hind-brain compression. The doctors said that they had seen many of the patients Dr. Banner referred to Dr. Rosner for surgery, and that their exam results were normal. "These patients are desperate people, eager to obtain any sort of relief that might be offered them," Dr. Woodham's letter said. "They, I feel, are easy prey to someone who offers them a quick fix for a problem that does not have a quick fix."

UAB's neurosurgery chairman, Richard Morawetz, confronted Dr. Rosner and tried to get him to leave the faculty, contending he was doing unnecessary surgery, according to people familiar with the events. They add that Dr. Rosner asked for an internal medical panel to investigate, and that a panel member asked him how much money it would take for him to leave the university. A settlement was reached, and Dr. Rosner left UAB.

Clearly, however, sentiment at UAB against the surgery wasn't unanimous. Some former colleagues of Dr. Rosner at UAB published an abstract of work that, Dr. Rosner claims, sought credit for what were his ideas and work. That abstract concluded that a Chiari malformation -- a too-tight skull -- could contribute to fibromyalgia symptoms. Dr. Rosner describes the events at UAB as "thieving, lying, backstabbing and power plays." UAB says a peer-review panel found there was no misconduct on the part of any of the researchers.

Some doctors now face litigation from Dr. Banner. He has alleged defamation by Dr. Woodham and the co-signers of his letter, and he has accused Dr. Morawetz and two UAB colleagues of hurting his medical practice by criticizing his diagnoses. A UAB spokesman declines to comment, but a lawyer for the defendants says they deny all the suit's allegations. It is pending in Jefferson County, Ala., Circuit Court.

A Few Converts
Dr. Rosner now does surgery at Park Ridge Hospital in Fletcher, N.C. Dr. Banner still refers patients to him, and also sends some, such as Ms. Plaza, to Dr. Heffez, who is at the Chicago Institute of Neurosurgery & Neuroresearch.

And Dr. Rosner has won a few other converts in the medical world. A rheumatologist at the University of Wisconsin, Daniel Malone, was persuaded by a talk Dr. Rosner gave at a medical conference and has begun referring patients to Dr. Heffez in Chicago. A doctor at Johns Hopkins Hospital in Baltimore, Peter C. Rowe, also heard Dr. Rosner speak and has since sent patients to him, to Dr. Heffez and to the third doctor who does this kind of surgery, John D. Weingart at Johns Hopkins. Dr. Weingart and Dr. Heffez have done about 75 of these surgeries, and Dr. Rosner an estimated 250.

All of which greatly concerns many others in medicine. Contending that this group of patients could be one particularly susceptible to a placebo effect, the critics complain that the surgery is being done without a rigorous effort to compare surgery patients' outcomes with others'. "My feeling is that Rosner and Heffez are moving way too rapidly," says Georgetown's Dr. Clauw. Though he agrees that some fibromyalgia and chronic-fatigue patients probably have brain or spine compressions, "my view is that it's an extremely low percentage."

The government doesn't require clinical trials for new surgical techniques, but many hospitals have internal review boards to scrutinize them. Dr. Heffez sees no reason for any hospital to do an internal review of such surgery because, he says, it is "standard treatment for a standard neurological problem that has gone undiagnosed." Dr. Heffez plans to publish his results, which he says have included improvement by 100% of the patients who suffered from disorientation, dizziness or diffuse pain, and by 95% of those with insomnia.

Word already is getting around. The National Fibromyalgia Research Association's web site (www.nfra.net) has publicized the technique, and word is spreading from people who have had the surgery and are happy with it. Ms. Plaza, for one, feels hers was a terrific idea. Before the four-hour operation, she says, she had headaches, blurred vision and fatigue "so powerful I had to lean against the wall." Now, she says, many of these symptoms have abated so much that "I feel like I could conquer the world."

Penney Cowan, the executive director of the American Chronic Pain Association, a non-profit organization based in Rocklin, Calif. "One of the problems with society is that because most pain is invisible, they're not aware of the real impact of chronic pain," she says. Cowan adds that the medical community, families and employers need to be more understanding. "Chronic pain is misunderstood by everyone who doesn't have it, and even by a lot of people who do."

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