Michael Rosner - Chiari and stenosis surgeries

[ME/CFS Skeptic]

At the turn of the millennium neurosurgeon Michael J. Rosner argued that decompression of Craniovertebral Stenosis led to improvements in fibromyalgia and CFS patients. Success stories of brain surgery were shared online and in media reports but eventually it would lead to controversy and multiple legal battles.

This article says that Rosner settled for $5million in one case but that there are many more ongoing.
https://www.hendersonvillelightning.com/news/11745-rosner-settles-malpractice-suitfor-5-million.html

There some strong similarities between this story and the CCI surgeries that became popular a couple of years ago. I hope that the latter story will not have the same sad ending.

I've made this separate thread to share information about Rosner and his theory that Chiari and stenosis are prevalent in CFS should be treated with decompression surgery.

Perhaps some forum members were already part of the online ME/CFS community back then and still remember how things went?

 

[ME/CFS Skeptic]

This article in the The Massachusetts CFIDS/ME & FM Association Spring 2000 provides some background:
https://massmecfs.org/more-resource...s/172-cfidsfm-and-chiari-malformation-surgery

"Dr. Michael J. Rosner, a primary proponent of the theory and the surgeon who has performed most of the surgeries to date—an estimated 250, according to the WSJE article—compared the effect of the surgical treatment to "the story of the discovery of insulin." Dr. Rosner claims, "Fibromyalgia and chronic fatigue syndrome may be many diseases, but clearly there is a big chunk of them who may be surgical candidates" (CFIDS Chronicle, May/June, 1999).

Dr. Sam Banner, a physician and ME/CFS patient who was operated on by Dr. Rosner, reported that he experienced a very significant relief of ME/CFS symptoms. Now Dr. Banner refers ME/CFS and FM patients to Dr. Rosner. Out of 300 of Dr. Banner's referrals, Dr. Rosner has operated on 90 (a rate of 30% of referrals). Dr. Banner claims "50 to 80% of CFIDS/FM patients have malformations." (WSJE)

Other medical professionals demonstrate less confidence in the treatment. Thirteen doctors who had examined many of the patients Dr. Banner referred to Dr. Rosner expressed concern that an "inordinately high" number of operations were being performed and that many of the patients' MRI results had been normal. (WSJE) Dr. Daniel Clauw, a well-known FM researcher, contends that only "an extremely low percentage" of ME/CFS and FM cases would involve a chiari malformation. In a magnetic resonance study, he found no difference in the results between the patient and control groups. (WSJE)

[...]

Dr. Rosner asserts that standard MRI testing can overlook chiari malformation and that only specialized scanning is diagnostic. (In other words, studies not using the specialized protocol would not detect the malformation). However, he adds that even the correct MRI scanning may provide only vague results, and that neurological testing and evaluation of symptoms is also necessary. (An important article on chiari malformation in the May 1999 Journal of Neurosurgery, is helpful in clarifying and distinguishing the primary symptoms of ME/CFS and FM and chiari malformation. The article also contains important information on diagnosis by MRI.)

According to Dr. Rosner, "The real diagnostic clue [to chiari malformation] is anything that signals neurological impairment—abnormal reflexes, tingling in both arms or both legs, shooting pain, urinary frequency, inability to stand on one foot... dropping things out of the hands." He goes as far as to say that neurally mediated hypotension (NMH) may prove to be "a good objective marker." (CFIDS Chronicle)"

 

[ME/CFS Skeptic]

In 2000 The American Association of Neurological Surgeons published a statement about this:
AANS - AANS Position Statement on the Use of Cervical Decompression for Chronic Fatigue Syndrome

Position Statement: 2000 Mar 14

AANS Position Statement on the Use of Cervical Decompression for Chronic Fatigue Syndrome

Contact(s): Heather L Monroe

(Reaffirmed, November 2009) AANS Does Not Recognize Cervical Decompression as a Treatment for Chronic Fatigue Syndrome

Recent reports on research exploring the use of cervical decompression as a treatment for chronic fatigue syndrome have become a subject of concern in the neurosurgical community. 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.

Chiari malformation is a congenital anomaly in which two parts of the brain, the brainstem and the cerebellum, protrude down into the spinal canal through the foramen magnum, the opening at the base of the skull through which the spinal cord connects with the brain stem.

Surgical correction of a Chiari malformation typically consists of a cranio-vertebral decompression, a procedure used to widen the opening of the foramen magnum and the upper end of the spinal canal, thereby providing more space for the brainstem, spinal cord, and descended cerebellar components to relieve symptoms of their compression.

Patients with a Chiari malformation commonly exhibit such symptoms as head and neck ache, neck muscle pain and spasm, dizziness and difficulty swallowing. Although some symptoms of chronic fatigue may be shared by some of those with patients with a Chiari malformation, they should not be confused as signs of abnormal brain function, nor should they be surgically treated as such

In view of the very small subset of patients diagnosed with chronic fatigue syndrome who also suffer from some element of cranio-vertebral compression and the recent claims that there is a neurological link between a Chiari malformation and chronic fatigue syndrome, the AANS recommends that scientific clinical trials evaluating the co-existence of Chiari malformation and chronic fatigue be undertaken to determine any possible relationship between these two disparate entities. At present, surgical treatment consisting of cranio-vertebral decompression has definite risks associated with it, and should be reserved only for patients harboring clinical and radiographic evidence of Chiari malformation

 

[ME/CFS Skeptic]

The following quote is taken form a 1999 article in the Wall Street Journal
Some Doctors Operate on People Diagnosed With Chronic Fatigue - WSJ
(available here: https://www.anapsid.org/cnd/diagnosis/chiari.html)

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.

 

[ME/CFS Skeptic]

Also from the WSJ article (which mentions Peter Rowe):

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."

 

[Mij]

I've mentioned this before. I had a friend back in 2000 who had a diagnoses of M.E for 10 years and later found out she had Chiari. This was her surgeon I believe. She had severe vertigo and similar symptoms to mine, but never mentioned PEM, but that could be because PEM was not a term back then. After surgery she felt 100% improved and acknowledged she never had M.E.

 

[Jonathan Edwards]

The figures of 50-80% of people with CFS having Chiari suggest that most of these patients are even less likely to have had Chiari than ME/CFS. They just got better for some reason.

It seems like the same story has had two waves of popularity.

It is interesting to note that Peter Rowe thought it appropriate to get involved.
It is time that 'ME experts' took the ethics of trialling new treatments seriously.

 

[Wyva]

Not Michael Rosner, but Dr Bolognese, who seems to be the go-to spinal surgeon for ME/CFS patients in the US right now. You can find a couple of similar articles on legal sites or smaller local news sites. ME/CFS is not mentioned in these stories and these particular cases may have nothing to do with ME/CFS, I have no idea, but it looks like there were at least some cases where surgery wasn't necessary (bold by me):
https://www.gilmanbedigian.com/new-...st-20-times-slapped-with-three-more-lawsuits/
NEW YORK BRAIN SURGEON SUED AT LEAST 20 TIMES, SLAPPED WITH THREE MORE LAWSUITS

A New York brain surgeon who has already been sued at least 20 times, can add three more lawsuits to his resume; the latest brought by women from across the country who sought his expertise to relieve their painful spinal conditions and ended up worse after treatment, according to their attorney.

The three women have Chiari malformation, a condition in which brain tissue extends into the spinal canal. It occurs when part of the skull is abnormally small or misshapen, pressing on the brain and forcing it downward.

Many people with Chiari malformation have no signs or symptoms and do not need treatment. However, for some, the condition is painful and has myriad, life-disrupting symptoms, including: headaches, neck pain, unsteady gait, poor hand coordination, numbness and tingling, dizziness, difficulty swallowing and breathing, vision and speech problems, tinnitus, slow heart beat and scoliosis.

When successful, surgery can reduce pressure on the brain and spinal cord and restore the normal flow of spinal fluid. This, in turn, can stop the progression of changes to the brain, stabilize the spinal canal and ease symptoms.

All three women, ages 24, 29 and 55, sought relief from Dr. Paolo Bolognese, but the women say they were given unnecessary surgery or the doctor botched their treatments. All “were left horribly damaged” and report being in constant pain. The youngest is bedridden. They are not the first to file lawsuits against the doctor. He has been sued at least 20 times over his medical care, including a case in 2009 when he did not even operate.

Bolognese had a surgery scheduled in 2009, but he took his family on vacation instead. His mentor, the former chief of neurosurgery at the hospital where they both practiced at the time, refused to cover for Bolognese and the patient was left lying on an operating room table anesthetized. The patient subsequently sued the doctors. Both doctors were suspended by the hospital briefly. The elder doctor retired, but Bolognese was reinstated and resumed his practice. The state health department could have fined the hospital nearly $30,000 for the incident, but declined to do so, saying the patient was “inconvenienced,” but not harmed when her doctors abandoned her in the operating room.

In another incident, the mother of a 4-year-old girl, reported in 2010 that Bolognese subjected her child to unnecessary neurosurgery for Chiari malformation, after which the little girl developed a dangerous spinal cord cyst. Despite that, Bolognese recommended to the mother that her healthy son, the 4-year-old’s twin brother, have the surgery as well.

 

[Braganca]

Other medical professionals demonstrate less confidence in the treatment. Thirteen doctors who had examined many of the patients Dr. Banner referred to Dr. Rosner expressed concern that an "inordinately high" number of operations were being performed and that many of the patients' MRI results had been normal. (WSJE) Dr. Daniel Clauw, a well-known FM researcher, contends that only "an extremely low percentage" of ME/CFS and FM cases would involve a chiari malformation. In a magnetic resonance study, he found no difference in the results between the patient and control groups. (WSJE)

[...]

According to Dr. Rosner, "The real diagnostic clue [to chiari malformation] is anything that signals neurological impairment—abnormal reflexes, tingling in both arms or both legs, shooting pain, urinary frequency, inability to stand on one foot... dropping things out of the hands." He goes as far as to say that neurally mediated hypotension (NMH) may prove to be "a good objective marker." (CFIDS Chronicle)"

I think the problem is that too many patients who do have what is considered “normal imaging” present with symptoms which are ME + some of the above neurological symptoms, often many of them. It’s clear there is something else going on with them, but no doctor will take ownership or bother to figure it out. There are actually a number of patients who did recover after surgeries, or do better. So, they are falling through the cracks of the healthcare system, being labeled with ME and then must take their chances with surgeons. More general surgeons need to consider this symptom picture and be willing to operate so more is known of these cases, and it becomes more accessible and less risky.