Editor’s Note: Michael Goodkin, M.D., is a cardiologist who became interested in CFS when his daughter started experiencing symptoms. Dr. Goodkin is a ‘noninvasive cardiologist’ practicing at Crozer Chester Medical Center in Upland, PA, and Riddle Memorial Hospital in Media, PA. He is board certified in internal medicine and cardiovascular diseases, a member of the American College of Physicians and a fellow of the American College of Cardiology. He has been in private practice for his entire career.
Dr. Goodkin offers his story for the benefit of other CFS/FM patients. He is not a CFS expert or researcher, but as he says, he is, ‘a physician whose kid got sick (with chronic fatigue syndrome) and was miraculously cured and who wants to give something back.’
CRANIAL OSTEOPATHY and CFS
Recently, I’ve stumbled into something that has led me to become involved with a therapy that is over 50 years old, has no toxicity and has brought significant improvement to a significant percentage of patients.
As a result of my daughter’s successful treatment of CFS by a posterior fossa decompression I became interested in CFS. I found there were a lot more patients around than I had thought. In screening patients for Chiari I, I found only about five percent of the patients had it. I am uncertain how adequate the MRI was as a screening tool given that three “normal” results were Chiaris at Johns Hopkins.
That left drug treatment with huge numbers of drug failures and frustration. At one point I didn’t want to see any more patients. The rheumatologists, neurologists and neurosurgeons thought I was a nut and did not appreciate having a cardiologist tell them how to manage patients. My partners and office staff were, not surprisingly, quite skeptical about what I was doing.
Word got around and I was referred patients. A regular cardiology practice contains many patients with syncope, (a transient loss of consciousness resulting from inadequate blood flow to the brain), near syncope and unexplained effort intolerance plus patients who already come in with the diagnosis of fibromyalgia. I also got calls from people about Chiari. Since nobody else was doing anything in our area I decided to stay with it and things took a strange twist.
In March 2000 my daughter complained of a month of severe headaches and pain at the surgical site. She ordered me to “fix it”. The only thing I could think of was an osteopath who had successfully treated an anaesthesiology colleague of mine with terrible neck pain after 2 whiplash injuries.
On exam he noted her coccyx (tailbone) was jammed up and to the right. He moved it and her headache was gone in two minutes. He showed me some asymmetry to her ears, did some subtle movements and they were now straight.
Two days later she was asymptomatic and has remained that way. He began to explain the basics of cranial osteopathy, which seemed like voodoo. He showed me an MRI of a terrible Chiari malformation, which turned out to be that of his receptionist who was dramatically better after a year of treatment.
Further investigation and positive experiences
Fixing chiari and CFS with your hands? If an operation could reverse postural orthostatic tachycardia syndrome and CFS, why not? As bizarre as it sounded, nothing about this surprises me anymore. I needed to test it. I sent a 35 year old with recurrent syncope, fatigue, neck pain and 20 seconds of his heart stopping on the tilt test.
He had failed everything the cardiac electrophysiologist and the neurologist had tried. He was desperate. I called him 3 weeks later. He was cured in 2 treatments! He had been bad intermittently for 20 years and continuously bad for 2 years. He remains asymptomatic 9 months later.
My experience is with about 30 patients. One patient got no help with 15 treatments. Several patients went one to three times and didn’t get better. The majority of the rest with CFS and/or FM who have stayed with treatment have experienced significant improvement. 20% are dramatically better in 1-3 treatments. One postop patient was helped significantly, one slightly and one quit after one treatment. One Chiari wasn’t helped in two treatments and is getting surgery, one appears to be getting better and one has refused treatment.
Origins of Cranial Osteopathy
Cranial osteopathy was discovered by Sutherland in the 1930s after he had observed visible pulsations of the brain in the OR. His book, which is still used was published in 1950.
He believed there is a basic pulsation of the central nervous system and cerebro-spinal fluid central to the body’s function, and that with years of training that sensation of touch can be developed to where it can be felt and that there are techniques to restore homeostasis. The cranial mechanism gets injured by trauma, both physical or emotional. General osteopathic techniques are used to find the inciting injury and fix it.
Injuries resulting in sickness
Fortunately, I have a phenomenal osteopath to deal with. He is gentle and invariably finds the root cause of the problem. Many patients seemed to get sick after an infectious illness but they very often have had some other injury. The injuries include several whiplashes, being hit in the head with a baton, a bully bashing a kid’s head into a wall, a cheerleader falling on her head, recurrent neck twisting in a dental hygienist, neck extension for intubation for surgery, a fractured leg, a nurse lifting a patient, repeatedly falling on the buttocks while skiing , several roller blading injuries etc.
Invariably the exam shows weakening or absence of the cranial impulse. It goes at 8-12 pulses per minute and corresponds to no other biorhythm. Treatments are every week or other week for an hour. There is no cracking or other brisk movements. Sometimes the patients are very fatigued after the first two or three treatments. Occasionally neck pain my briefly get worse. Patients are very skeptical going in no matter what I tell them and are amazed when they start feeling better.
Cranial is taught in all 19 osteopathic medical school but most DOs (doctors of osteopathy) in training want nothing to do with manipulation and only 20% do any manipulation. Of those only about 20% do significant amounts of cranial.
Within the profession many don’t believe in it. It is something that is hard to believe in until you’ve seen what it can do.
More research needed
There is some research regarding this cranial rhythm but it appears in osteopathic literature and what I see is far from conclusive. DOs are their own worst enemy and they will freely tell you that. MDs require scientific research and double-blinded randomized controlled trials to appear in peer reviewed journals before they will use them in practice. We are supposed to practice evidence based medicine.
Osteopaths have not done enough of these studies. They have done little in collaboration with MDs and virtually nothing appears in MD journals. I have been trying to change this but my biggest problem has been lack of interest on the part of the DOs who are not particularly concerned with convincing MDs of what they do nor advertising to the public by virtue of positive research results. They are all busy by virtue of word of mouth. My collaborator has greatly helped my back, my wife’s radial nerve injury, my niece’s back, and the necks, backs and shoulders of many patients.”
I was chief of internal medicine at a hospital with an osteopathic internship program, had never heard of cranial and thought of osteopathy as a glorified chiropractic.
Potential of Cranial Osteopathy
The potential of cranial osteopathy is enormous. New York College of Osteopathic Medicine under Dennis Dowling DO, has completed a randomized trial of cranial versus sham manipulation in Parkinson’s Disease. A single treatment gave measurable improvement in performing certain tasks. One of the possible mechanisms that may lead to improvement in CFS is improved pituitary function. I am told by the cranial DOs that the cranial mechanism causes a milking of the pituitary. I don’t know of any science to validate this.
Cranial Treatment will Have A Place
I am certain, however that if studied, cranial will have a place. Anyone with CFS/FM who isn’t doing well should try it. No drugs. No toxicity. No surgery. My biggest problem is insurance, which my practitioner usually doesn’t accept. It’s $100 a pop. A second problem is getting patients to go in the first place and then to stay with it as 10-15 treatments may be necessary to see a result. The other problem is finding a good DO who does cranial.
Cranial Directory of Practitioners
Fortunately, my collaborator has given me a copy of the Cranial Directory, which covers the world. It is put out by the Cranial Academy, 8202 Clearvista Parkway, #9-10, Indianapolis, Indiana 46256, 317-594-0411 Fax 317-594-9209, Email :firstname.lastname@example.org
Possible Avenues of Research
I am in private practice and will never do the kind of research that needs to be done but am attempting to interest others to do it:
1) I did a case report on my daughter at a syncope symposium and generated significant interest form cardiac electrophysiologists who were unaware of anything about CFS and who feel it is their obligation to know everything about syncope and near syncope. All have patients refactory to therapy.
2) Three major cardiac electrophysiologists have been matched with cranial DOs, hoping they will at least test it in their worst patients. All it will take is seeing it work in a few patients to light the fire in someone.
3) The American College of Cardiology had an report on treatment of CFS with florinef by Hugh Calkins from Hopkins on its recent series of educational audiotapes it sends out(ACCEL). I’ve written the immediate past president and present editor of ACCEL, C.Richard Conte MD and sent an eclectic and voluminous series of scientific articles about the subject imploring him to initiate an educational effort for cardiologists who in general know nothing about CFS and orthostatic intolerance and are missing it in their offices on a regular basis.
4) I attempted to get David Bell to come down and see what we’re doing. He offered to have us up to his place but my DO does not have a NY license and single treatments will be good for diagnosis but unlikely to give major improvement.
5) Deirdre Buchwald’s office was contacted but she wanted to know the theoretic basis and have a pilot study already done.
6) Contact has been made with Anthony Chila,chairman of osteopathic manipulative therapy at Ohio College of Osteopathic Medicine in Athens, Dennis Dowling, chairman of OMT at NYCOM and Gil D’Alonzo editor of the Journal of the American College of Osteopathic Medicine, regarding research and funding by the osteopaths who other than the patients have the most to gain. It will take a research proposal by a CFS researcher, cardiac electrophysiologist or neurologist for anything to happen.
7) A major CFS researcher has already treated over 100 patients with craniosacral therapy a version of cranial osteopathy taught at the Upledger Institute in West Palm Beach Florida predominantly to physical therapists. He hasn’t decided how to go about academically studying it but is convinced of its superiority of any other treatment he’s tried previously in 2000 other patients. He wishes to remain anonymous for the moment.
8) I’ve sent a number of patients to Roger Kula, chiari neurologist in Brooklyn and have suggested he try cranial on the patients they aren’t operating on. Another approach has been to interest patients and patient groups.
9) Michelle Aker’s people have been contacted and they have been matched with a DO. She had multiple head and neck injuries.
10) A highly placed person in a large chronic fatigue patient group whose child has been ill for 5 years has been matched with one of the gurus of cranial, James Jealous in New Hampshire.
11) The president of a statewide CFS support group has started his daughter on treatment with my DO.
12) At the ASAP meeting in July in Cleveland I stated that cranial osteopathy had been used successfully on symptomatic Chiari patients.(Other osteopaths have told me of successful treatment) The neurosurgeons who ran the meeting must have loved that. My next efforts will be to involve more cardiologists with CFS and cranial and try to get my cousin, an academic neuromuscular person involved. If enough patients have good results the appropriate research and funding will follow.
I’m hoping some readers will try treatment and get back to me. Unfortunately everyone is looking for a magic pill. I am sure CFS is not going to turn out to be what people thought it was.
Editor’s Note: Dr. Goodkin can be reached at: Michael B. Goodkin, M.D. Suite 203 POB I , 1 Medical Center Blvd.,Upland, PA. 19013.
Please remember to discuss all suggestions with your own healthcare provider.