Standard MS Lobby -Neurologists and Big Pharma - might object to my analysis, my fault must be the refusal to take their chemicals. They could well back off and leave MSers alone.
Seven months after Canadian Professor George Ebers was awarded the John Dystel Prize by the National MS Society/American Academy of Neurology for his many years MS research, he gave a lecture basically discrediting the drug treatments favored by this Society. He said if the purpose of these drugs was to prevent descent into Progressive MS disability, they didn’t work.
See ( “Critical Review of outcomes used in MS clinical trials” which was posted on You Tube November 4, 2013 by the European Medicines Agency). Later Dr. Ebers engaged in debates denouncing (politely) the failure of Neurologists to face facts about DMD efficacy, arguing that the CCSVI controversy had revealed to what extent MS patients don’t trust their Doctors. I also heard him say that given the ineffective drugs' serious side effects, one would be better off forgoing the drugs and enhancing one’s overall health. For starters, his fellow Canadian Matt Embry provides an excellent treatment protocol on his site MS HOPE, though his reference to the blood circulation issue is rudimentary at best. My purpose here is to open the door to a more profound discussion of a complicated therapy direction.
It has been sixteen years since Professor Zamboni posted his CCSVI theory on the internet (December 2008) suggesting that MS is in fact a blood circulation disorder impacting the brain. Since then scientific research has revealed that disruption of ANY fluid bathing the central nervous system (blood, cerebro-spinal, lymphatic, glymphatic) can cause “MS” symptoms.
I first heard about “Liberation Therapy” on the site Daily Kos summer 2010. Professor Zamboni initially proposed using the Sonogram to diagnose veins running from the brain towards the heart – the Internal Jugular Veins and the Vertebral Veins. Once the narrowings/blockages in these veins were observed he recommended opening the stenoses with balloon angioplasty and, if so indicated by the venogram, the chest azygos vein as well. In his paper “CCSVI – A New paradigm and therapy for multiple sclerosis” posted on July 25, 2010, the Interventional Radiologist Salvatore J.A. Sclafani, MD refers to Dr. Zamboni’s work by writing “Chronic cerebrospinal venous insufficiency (CCSVI) is a hemodynamic condition in which cerebrospinal drainage is altered and inhibited. Outflow obstructions of the internal jugular veins (IJVs), vertebral veins, and/or azygos vein ( AZV) and their tributaries result in stasis or reflux of these outflow veins and redirection of flow through vicarious circuits…
On reading this I immediately asked my husband to massage my neck/back, both of us standing. He was to work from the head down to the waist while we both visualized the blood flowing down from my head to circulate through the heart. I felt better at once as the head congestion lifted. Late that summer stress triggered a MS “attack”. I wondered with a heavy heart how much ground I would lose. That evening I performed a TENS (electrical stimulation) acupressure treatment on myself (see Acupuncture blog). I was shocked the next morning to realize the attack had abruptly stopped. Not diminished, not attenuated, but stopped. Years later when I studied my journals and records I realized a Shiatsu massage had stopped my first major attack in 1980 just when my Neurologist had prepared to order steroid treatment. (See Dr. Pallis blog). Opening the flow of blood/fluids was the best treatment.
Today my MS has progressed sufficiently that I no longer enjoy this marked relief, though oddly enough I no longer experience « attacks » nor suffer the extreme fatigue. The TENS acupressure treatment or upper back/neck massage might make me feel somewhat better, but not so dramatically as in the past.
In the USA the first CCSVI angioplasty treatment performed at Stanford Medical Center proved a great success. After arranging the experimental procedure for her composeer husband Jeff Beal March 2009, Joan Beal launched her blog « The Vascular Connection ». Yes, her recommended treatment protocol for her husband’s MS included diet modification and continued use of the MS drug Copaxone. But Joan believed that by opening blood circulation through Jeff’s jugular veins, his MS was effectively « cured » which allowed him to resume normal life activites.
This early success triggered a tsunami of interest in the MS community. Unfortunately Jeff Beal’s recovery proved illusory for many. Outcomes varied. Perhaps one third of patients knew impressive recovery of function after angioplasty, one third minor recovery, and one third none at all. Maybe one fourth of MS patients suffer from skeletal obstructions (bones, muscles, arteries) of blood/cerebro-spinal fluid flow which means ballooning the veins might injure them without relieving the obstruction. Also venous anomalies aren’t specific to MS patients though scientific research has shown that blood circulates more slowly through MS brains than normals. Once dilated, the veins could re-stenose thus obliterating the improvements. And after a stent originally designed for arteries lodged in the heart of a patient which necessitated surgery, the use of stents was abandoned. Joy, relief, heartbreak, frustration - emotions were as varied as the outcomes. I for one didn’t want to take the risk of angioplasty in the USA without American health insurance (mine covers France).. Also, I felt I could keep the blood/spinal fluid flow open through manual treatment – massage, acupuncture, osteopathic or chiropractic manipulation and TENS acupressure. And, as it turns out, I was right as long as treatment was available. The Covid lockdown proved disastrous for me in that sense. (I didn’t even THINK of taking the Covid « Vax », I knew from Jan 2020 that the people in charge of NOT treating Covid were lying.)
In spite of some impressive recoveries after angioplasty, treatment of MS as a CCSVI disorder met with skepticism and eventually strident opposition from the dominant Neurology/Big Pharma lobby. By 2012 these special interests influenced the American FDA to effectively ban the treatment for MS patients. While relatively safe and legal, this meant MSers had to pay out of pocket to get treatment since medical insurance refused to pay for an “experimental” procedure. The FDA shut down the Hubbard CCSVI registry in 2012 thus launching an ongoing witch hunt against any Interventional Radiologist (IR) who treated MS as a blood circulation disorder. The renowned IR Salvator Sclafani finally moved his CCSVI treatments to a Polish clinic.
When MS Neurologists derisively mocked IRs as plumbers, they weren’t altogether wrong. The vascular pathology in MS can be more complicated than simply opening a « plugged » tube. A venologist in Southern California Dr. Owiesy has observed that when the middle layer of the vein composed of smooth muscles go into spasms, blood flow is obstructed. Again the problem resides “exterior” to the vein, not “interior”. The veins may be weak or somehow defective, but the mechanism which shuts off the blood flow isn’t “intima”. This corresponds completely to my experience. The treatment? Dr. Owiesy administers a mixture of dexamethasone/lidocaine/thiamine in the area around the Internal Jugular Vein in order to relax and open it. Apparently outcomes have been impressive, risks and expense minimal (though I’ve never tried it.)
However, one may not even need this medical drug solution. A non-inflammatory diet/supplements alone may prevent the release of molecules which lead to spasms and constricted veins. The role of C-Reactive Protein, Birth Control Pills, so much can be understood by looking at the veins, the endothelium and now the veins smooth muscle layer. Dr Owiesy’s observation that veins can « shut off » through stress for instance tends to cast in doubt the mechanistic approach of angioplasty. Anyway, the problem does not lend itself to an easy solution, and one size fits all clinical trials cannot provide a simple « answer ».
My interest here is two fold : 1) I intend to address the CCSVI MS question in its complexity and 2) I will address how the Covid 19 scam illustrates the power of Big Money to « capture » medical science and regularitory agencies to the detriment of CCSVI MS patients such as myself. We need to take matters into our own hands, find the help we need and side step those who would do us harm.
Tags: CCSVI MS, DR. ZAMBONI, DR SCLAFANI, PROFESSOR GEORGE EBERS,
COVID 19, MS HOPE MATT EMBRY