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?
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)"
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
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)
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.
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.
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): NEW YORK BRAIN SURGEON SUED AT LEAST 20 TIMES, SLAPPED WITH THREE MORE LAWSUITS
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.
