If I had known that Multiple Sclerosis is essentially a dysfunction of fluid flows bathing the central nervous system – blood, cerebro-spinal, lymphatic, glymphatic– I wouldn’t need a cane to walk today. A simple idea with vast consequences. This site is intended to share the “liberation” I feel as an MSer who no longer needs to fear inevitable doom
This story began when I read about Professor Paolo Zamboni’s« Liberation Therapy » on the site Daily Kos summer 2010. In search of treatment for his wife’s MS, the vascular surgeon Professor Zamboni proposed using the Sonogram to diagnose veins running from the brain towards the heart – the Internal Jugular Veins and the Vertebral Veins. Once narrowings/blockages in these veins were observed he recommended opening the stenoses with balloon venoplasty and, if so indicated by the venogram, the chest azygos vein as well (his wife’s case.) 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 acupressure treatment on myself (see Acupuncture and CCSVI blog Sept 10, 2013). 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 was preparing steroid treatment. (See Pallis/Shiatsu blog May 5, 2013). Opening the flow of blood/fluids was the best treatment.
I began to read and participate in the THISISMS.com forum
https://www.thisisms.com (which I found through Wheelchair Kamikaze - Marc Stecker). It was an exciting time when MSers had a real hope of a simple, straightforward cure. Under the CCSVI thread I discovered « Dr Sclafani answers some questions » which he had launched March 12, 2010. Joan Beal, who had arranged the first CCSVI venoplasty at Stanford Medical Center for her composer husband Jeff in April 2009, became a « cheerleader’ (her pen name) for the CCSVI procedure given the remarkable reversal of MS symptoms he enjoyed. His veins did not re-stenose, probably because the stents which had been inserted remained cogent. Unfortunately, the stents – designed for arteries where blood flows away from the heart – slipped out of place to finish in the heart of one patient who had to undergo heart surgery, a truly horrific outcome. So Stanford stopped performing venoplasty for MS patients and stents were no longer used elsewhere. In my opinion if research had been encouraged to solve the problem of veinous stents (of use now in kidney veins for dialysis) venoplasty for MS might now be part of standard treatment. Instead, this complication lent credence to the MS treatment lobby’s hysterical opposition to the very IDEA of CCSVI.
I launched my site MSCureEnigma.net March 2012. The CCSVI Alliance was founded in 2011. The first conference of The International Society for Neurovascular Disease ISNVD was held in 2011. (Their research work is ongoing.)
Dr. Sclafani became a leader in CCSVI treatment and research. His use of the Intravenous Ultrasound (IVUS) allowed him to actually SEE the interior of the vein he was treating and to judge accurately the size of expansion – too small the vein would re-stenose, too large the vein wall could be damaged. Unable to insert stents, he would advise his post venoplasty patients to avoid certain activities which could trigger the veins to collapse (like carrying heavy bags arms down.)
In spite of some impressive recoveries after venoplasty, treatment of MS as a CCSVI disorder met with skepticism and eventually strident opposition from the dominant Neurology/Big Pharma lobby. Doubtless these special interests influenced the American FDA to effectively ban the treatment for MS patients in May 2012. While venoplasty is 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.
There were problems. Outcomes varied. Perhaps one third of patients knew impressive recovery of function, one third minor recovery, and one third none at all.
In 2013 I (as Vesta) joined in a discussion on the Dr Sclafani thread on ThisisMS website with Dania. We both felt that before undergoing venoplasty one should verify that no external factor like a bone, artery, or muscle was obstructing venous blood and/or cerebro-spinal fluid flow. A horse riding accident had injured Dania’s spine in adolescence. (Dr Damadian, inventor of the FONAR Upright Cine MRI, estimates that on average it takes 11 years for an accident to manifest as neurological symptoms. This would fit Dania’s time frame.) Subsequent to venoplasty undertaken in Bulgaria, her jugular veins had withered while still remaining obstructed by bones. A true pioneer, she sought by her testimony to advance MS CCSVI treatment.
At about this time I began to avidly read Chiropractor Dr. Michael Flanagan’s thread CCSVI- CCVBP. Author of The Downside of Upright Posture – The Anatomical Causes of Alzheimer’s, Parkinson’s and Multiple Sclerosis . he believed that up to 25% of MSers were in fact victims of skeletal obstructions of cerebro-spinal fluid and blood circulation. By very generously answering personal questions, commenting on MRI images and X-Rays, he opened an entire new world for me. He demonstrated that neurological symptoms could originate from pressure OUTSIDE the vein rather than obstructions from within. In order to get a global view of fluid flows within the Central Nervous System (CNS) he recommended use of the FONAR Cinematic (as in cinema) Upright MRI developed by Dr Damadian (who had invented the precursor of the first MRI). The velocity and any obstructions to actual CSF and blood flows are filmed to accurately understand the patient’s condition. See Dr. Flanagan’s quote from:
C1, C2 and CSF Flow | Alzheimer's, Parkinson's and Multiple ...
« when it comes to blood and CSF flow, upright MRI is the wave of the future in brain research…
Cerebrospinal fluid (CSF) flow is called the third circulation of the brain and it is the least understood…
CSF comes from arterial blood that has been filtered through the blood brain barrier to the point where it is mostly water. CSF leaves the brain through the venous system. Therefore, backups in the venous drainage system affect cerebrospinal fluid (CSF) flow and drainage. Although it uses other routes as well, such as cranial and spinal nerves and the lymphatic system, most of the cerebrospinal fluid (CSF) produced by the brain eventually makes its way up to the superior sagittal sinus where it empties into the venous system…
About sixty percent of the CSF produced in the brain ends up in the spinal cord… »
After careful analysis of my own experience and relevant research, I have come to think MS progression is characterized by increasing obstruction of cerebro-spinal fluid and/or direct pressure on the spinal cord so that venoplasty treatment for CCSVI will become less and less effective in bringing relief to handicap. (See MS Positive Feedback Loop under Cure or Control, and RRMS Progresses to SPMS blog Jan 21, 2015. My quote follows.)
« Eventually the body rigidity/muscle spasms deform and damage the spine. As muscles weaken and atrophy the entire body structure is compromised leading to obstructed cerebrospinal circulation and direct pressure on the spinal cord. At this point it is no longer the blood reflux inflammation which “wound” the nerves so much as lesions and cerebrospinal fluid obstructions which impact the spine. We now have SPMS and increasing issues with mobility. Ideally MSers should turn to functional healers – Osteopaths and Chiropractors - who can manipulate the head/cervicals/full length of the spine to relieve pressure on the spinal cord and free the cerebro-spinal fluid. Physical Therapists and Massage Therapists can provide fluidity and movement so vital to overcoming the natural tendency to rigidity ».
INSERT : (January 2018 I injured my spine by falling on my derrière. Ensuing symptoms including bladder weakness (autonomic nervous system) have unfortunately confirmed this analysis.)
My next « Eureka » moment came thanks to Mark Miller, another Stanford stent recipient. (See Dr. Owiesy’s « Superior CCSVI Solution », Feb 12, 2017) His family MD Dr. Owiesy of Southern California has observed that when the middle layer of the vein composed of smooth muscle tenses up or goes 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 to my experience. The treatment? Dr. Owiesy, specialist in migraines, administers a mixture of dexamethasone/lidocaine/thiamine (used to treatTrigeminal Neuralgia) in the area around the Internal Jugular Vein. Stress alone - emotional, psychological, toxins, cold, the flu -may trigger a physical response which obstructs blood flow.
Here is suggested one of the many benefits of the MS diet. For example non-inflammatory diet/supplements alone may prevent the release of cellular calcium which is known to trigger muscular spasms and, to Dr. Owiesy’s thinking, constricted veins. Dysfunction of the autonomic nervous system which runs through the spine may follow. It is this system which controls the urinary and bowel functions whose dysfunction marks MS Progression.
My final « Eureka » moment ? « Violin », a correspondant who came to my site through Thisisms.com has provided critical information which completes my understanding of the Vascular Connection to MS. Treated for Lyme disease which mimics MS symptoms (but which can be treated with antibiotics), venoplasty was recommended to her as necessary to clear out veins caused by chronic Lyme disease. Her first venoplasty helped her enormously, a second was recommended. She was also told that infections in the head located above the jugulars tend to obstruct venous blood flow through them. She had suffered many such infections, ear, teeth, Lyme. So here is suggested that infections alone can damage, obstruct and « clog up » venous blood flow – for example EBV Mononucleosis or Chlamydia pneumoniae. Other potentially « clogging » factors include an unhealthy diet and Birth Control Pills.
One final idea to consider ? Simon Ewart-Grist, a British electrical engineer by profession, has proposed an original idea - brilliant might be the word – suggesting that the iron nanoparticles of magnetite in the blood damage the myelin of MS patients. (I have posted his theory on the blog posts of September 29, 2018 and October 22, 2018). He has invented a device – the desatascador- which acts as a magnet to draw the nanoparticles out of the body. To prevent bacterial obstruction he recommends the use of cranberry juice to « lubricate » the vein walls. At least one participant on TIMS found use of the desatascador improved his eyesight dramatically, and his testimony suggested to me that the magnetite had punched holes in the vein walls to damage the optic nerve and retina. Anyway, we are still addressing blood flow.
So here I’ve suggested multiple causes of fluid obstructions in the central nervous systems of MSers.
It has been over 150 years since the « central vein sign » was observed –and ignored - as characteristic of MS, that is to say the Vascular Connection. Dr Anton Schelling provides the history in his paper MULTIPLE SCLEROSIS : The Image and its Message. The Meaning of the Classic Lesion Form. For a scientific study of why this FACT has been rejected by Neurologists who dominate MS treatment see Malcom Nicolson and Cathleen McLaughlin :Social constructionism and medical sociology: a study of the vascular theory of multiple sclerosis (See also my July 19, 2019 blog post « Status, not Science, rules MS Treatment »)
Neurologists enjoy a superior status to Interventional Radiologists and Vascular specialists which does much to explain why they had few qualms in rejecting Zamboni’s work.
As frustrating as it is for Vascular specialists to be disdained by Neurologists, they too are guilty of imposing superior rank in the pecking order to discredit alternative therapies. The family GP Dr Owiesy’s work on treating spasms in the vein’s smooth muscle layer to facilitate blood circulation has been more or less dismissed by the Interventional Radiologists of the ISNVD. Even lower in the pecking order we find Chiropractors and non MD Osteopaths who don’t count officially precisely because they aren’t MDs. Allopaths disdain Homeopaths, Kinesiologists, and Acupuncturists while massage therapists hardly rate at all even if they may be able to release CNS (Central Nervous System) fluid flows.
I believe Multiple Sclerosis should become a distinct specialty independent of Neurology. One might begin with this one scientific study.
*Cerebral Circulation Time is Prolonged and Not Correlated with EDSS in Multiple Sclerosis Patients: A Study Using Digital Subtracted Angiography
« Discussion : The present study reported a significant CCT (Cerebral Circulation Time) increase in MS patients compared to control sub- jects, indicating a consistent condition of cerebral hypoperfusion. »
Where, why is the blood flow obstructed ? And fluid flows impacting the central nervous system? Once determined, I believe one can begin to be of real help to the MS patient.
So, what should my MS specialist do that I can’t do myself (like improve my diet)?
See my August 19, 2019 blog post
« I need a REAL Multiple Sclerosis Specialist »
Even though Dr. Zamboni's insight has come a bit late for me, it has given me a new lease on life. I used to live in constant fear of a debilitating relapse. Now I know what to do to head off a breakdown. Having embarked once again on my diet I feel better and hopeful of improvement in the future. I know that anything which improves blood/brain fluid circulation (swimming, acupuncture, acupressure, massage, kinesiology, osteopathic, chiropractic, any energy therapy – AND fifteen minutes of Sun a day) will make me feel better and prevent a relapse. As I’ve gotten control over the blood reflux into the brain, I’ve come to see the importance of keeping my spine strong and stabilized. Optimal nutrition and supplements and oxygen can keep my blood vessels as well as the brain’s grey matter healthy. And I need to be ever vigilant in avoiding illnesses which might trigger the latent EBV virus.
I hope other Multiple Sclerosis patients will reflect on their own history and that my experience will be of use in their Healing.
September 15, 2019
Tags: Dr Zamboni, Liberation Therapy, CCSVI, Dr. Sclafani, Dr. Flanagan, FONAR MRI, Dr. Owiesy, Simon Ewart-Grist, Dr. Anton Schelling, central vein sign