1) I overlooked the Autonomic Nervous System which controls involuntary functions – (involuntary control of internal organs, heart rate, digestion, bladder and bowel function, respiratory rate, papillary response, vasomotor action on the blood vessels) and in particular that it leads from the spine to connect to the brain.
2) Preoccupied with the health of the inner layer of the veins – the endothelium - I overlooked the smooth muscle layer of the vascular system. Dr. Owiesy’s theory that in CCSVI MS the vein muscles may go into spasms to block off blood flow from the brain corresponds exactly to my own experience.
MY THEORY UPDATED :
Early on in the RRMS phase, the blood reflux injures the Central Nervous System (CNS) and the primary focus to stop an attack should be to restore the blood flow (CCSVI). A Shiatsu massage may suffice. Acupuncture, Osteopathic treatment, massage, TENS Acupressure, Massage. Anything to get the blood out of the head flowing towards the heart. Dr. Owiesy’s injection of dexamethasone/lidocaine/thiamine around the brain’s draining veins may bring blood flow relief, and of course venoplasty is designed to do just that. The major drawback to venoplasty is that stents apparently still haven’t been devised to keep the blood flowing freely and safely after venoplasty. The 2009 Stanford CCSVI venoplasty-with-stents recipients still report full recovery, but problems for some brought an end to stents for veins. Re-stenosis remains the risk to CCSVI venoplasty.
PROGRESSION : But eventually as handicap develops the body structure is compromised which puts pressure directly on the spinal cord itself or on the cerebral spinal fluid flow (CSF) with corresponding damage to the nervous system/brain. (Positive Feedback Loop)
Worse, leading from the damaged spine, impulses from the Autonomic Nervous System are disturbed resulting in dysfunction of the excretory function and eyes (for example). Venous blood flow from the brain may continue to back jet into the CNS, but the relief of venoplasty may lead only to minimal recovery of symptoms which have become more generalized through the Autonomic Nervous System and spinal cord. This may explain why up to two thirds of venoplasty recipients enjoy minor or no relief from their MS condition.
This implies as well that Progressed MS – SPMS and PPMS – is characterised by pathology in the spine which impacts the axons, walking, and the Autonomic Nervous System functions. Once MS has Progressed, opening of blood flow draining from the brain which is the goal of venoplasty may lead to a more limited relief than would have been the case had one been treated earlier.
Before Annette Funicello died April 2013 she had posted a video of herself which revealed her terribly handicapped MS body. She reported that she felt better when the blood flow was restored – her husband Glen Holt confirmed the change in her – but it was too late to heal her twisted, handicapped body. She wanted to promote the CCSVI venoplasty therapy, reporting that it was the ONLY thing which had helped her in her long losing battle with MS. Her Foundation (Annette Funicello Research Fund for Neurological Diseases) has raised money to support of CCSVI research. (It should be obvious that the pathological blood flow through her brain injured it and that my suggestion to get the blood flowing through massage, osteopathy etc would be insufficient. Once her venous brain blood flow had been restored, the damage to her nervous system had been too extensive to allow recovery.)
Joan Beal (cheerleader on www.thisisms.com/) writes
If there is something we can do to stop progression of MS or ease symptoms, it is important to speak out a out it. Glen says that the CCSVI venoplasty procedure performed on Annette was the first treatment b that helped her. It allowed her to swallow and breathe better. Imagine if her malf ed jugular veins could have been treated earlier. She had a 30% occlusion on one side, ormand no flow with reflux into the brain on the other. That is what CCSVI advocates and researchers are working to understand.
My husband had a reversal of gray matter atrophy after his venoplasty procedure. He also had relief in heat intolerence, fatigue and cognitive fog. This is something copaxone did not acheive for him in the two years he took it prior to his venoplasty. He remains on copaxone, the endothelial health program and keeps moving. We hope his MS will not progress. So far, so good.
That's why Annette's story, and everyone's story, is so important.
Because Annette and Glen do not want others to suffer as she has, and they are going to work for answers through her neurological foundation. http://www.annetteconnection.com/About- ... h-
Back to me. My own thinking is that once MS Progression impacts the spine adversely to disturb the Autonomic Nervous System, the blood flow factor diminishes in importance in overcoming MS decline.
For that reason I find my recent setback particularly disturbing. Techniques which open blood flow from the brain (massage, osteopathy, TENS acupressure) don’t relieve me as dramatically as before. And my walking is more laboured. I am irritated most by the muscle wrap around my « good » left foot and lower leg.
I will use my own history as the laboratory to understand the MS progression process.
May 1980 I inadvertently stopped my first big RRMS attack with a Shiatsu massage which halted a violent blood reflux jetting from the Azygos Vein onto the spine. The half of the spinal cord which suffered damage paralyzed the right arm, the leg was spared, I can walk.
Subsequently I went gradually downhill. I did observe that an acupuncture treatment stopped an attack immediately. I asked myself « What does that have to do with an auto-immune « attack » ? » I began treatment by a kinesiologist/nutritionist in Feb 1984 and entirely recovered lost function over the following year through detoxification, diet, supplements, and energy balancing treatments. My recovery was so dramatic that my Neurologist declared I couldn’t have recovered from MS as I had, therefore I never had it. At the time of my diagnosis the MRI didn’t exist. Later, Sept 1990, my Neurologist was chagrined to be proven wrong when he saw the MS lesions on the MRI.
April 1992 I moved to France. Beseiged by 5 toxic, jealous females I lived a terrible stress, and I began to eat glutens again. My condition deteriorated. I began to limp on a trip to Morocco May 1993. Even though I did by chance enjoy a massage there that didn’t stop the limp. Later I was surprised to see that I didn’t recover lost function as I had in the past. Over the following years my right knee/leg gradually went rigid. I should have been seeing a physical therapist. What was my « personal physician » thinking ? Jan 1996 I began treatment by my Laotian Acupuncture Doctor. As the leg went rigid, she was thinking of herself and her love affair. (I finally fired her, but too late.) Jan 1998 I walked out of a 14th century « château » in pitch black darkness and fell off a stone porch to fracture my right wrist. This was the beginning of the end for my right arm which had recovered after being totally paralyzed in my first big 1980 attack. The arm/hand had entirely recovered in 1980 other than some residual weakness. But after the 1998 fall, though I continued to play the piano, the arm and hand gradually weakened. The lady Acupuncture Doctor observed that I couldn’t stretch out my right arm which was blocked at the elbow, but she shrugged and suggested nothing, and went on talking about her lover. Fifteen years later a gypsy healer visualized my body, took the 2 small fingers of my right hand and ran the ligaments up to the elbow to wind them around the joint bones like rubber bands. The ligaments had slipped off of the joints. He solved the problem, but by then it was too late, I had lost too much function. I had been too passive, failing to address the problem when it developed. The Doctors were no help, I needed a folk healer. Why did I delay seeking one out?
Spring 2002 I sprained my right ankle walking on some weird black shoes (French fashion. The front toe section was a square block which didn’t land properly.) Not a bad sprain, I continued to « pointe » my foot which meant the drop foot hadn’t yet developed. When did I lose control of the ankle ? I was so unaware. Had I consulted the Internet « university » I could have known what a drop foot is and worked to keep the ankle « alive ». That is my current worry with the left ankle. Awareness is SO important.
March 2007 I tripped on a carpet to suffer a terrible fall which sheared off the bone of my good left arm from the shoulder. The flesh held the two parts together. The very competent Surgeon reunited the parts with bolts and screws and I entirely recovered the use of that arm. (Fortunately I am left handed.) I was able to work my right arm better because I had to, but basically was without arms for 9 weeks. A very bad experience. The surgeon planned to remove the screws afterwards, but every time I had an appt with him I fell. I decided my body was warning me against removal of the screws. They still bother me but being armless would bother me more.
The following year 2008 I fell and broke the right shoulder which was badly treated. That was the end of my right arm (as well as the piano playing.) After the year of Falls 2007-08 I began to fear falling and became increasingly cautious while walking with a cane. I prefer « strolling » with my 4 wheel shopping caddy because of the freedom it gives me. I’ve lost my freedom nonetheless because I lack the confidence to take the bus alone as I used to.
I began to consult the ThisisMS site summer 2010 after I read about CCSVI on Daily Kos. Why did I wait so long to consult MS sites on the Internet ? For so long the official MS literature featured the auto-immune disease theory –still does- and heavy duty drugs. I should have known things had changed among MSers on the Internet. Well, I’m from the pre-internet generation and not in the swing of things.
I don’t bother with Neurologists for the same reason. They seem obsessed with the diagnosis and use cookbook medicine to « treat » MS. Above all most don’t want to hear of alternative therapies. No way will I undergo another spinal tap, and if I ever do an MRI again it will be an upright Cine Fonar MRI which doesn’t yet exist in France. I’m nearly 69 years old and am doing OK as long as I follow my own advice.
Interest in CCSVI was at its height in 2010 when I joined the excellent ThisisMS.com discussion group. I’ve learned so much I should have known earlier, especially of what was happening to my body e.g. the drop foot.
Since I feel I can keep the blood flowing without Angioplasty I launched my site MS Cure Enigmas March 2012 to encourage MSers to help themselves. And to reflect on their own history before making any decision.
In my previous blog post I wrote about my recent setback. Poor diet, toxicity. Above all rigidity, Injury to the spine seems to have lead to symptoms of the left foot/ankle. Has the spinal cord been injured by body tension during the recent trip to Spain ? Has toxicity triggered cellular inflammation which in turn triggered spasms in the brain’s draining veins. ? Has rigidity in the spine dysregulated messages from the Autonomic Nervous System ?
I fear repeating the travel experience next winter, I can’t lose any more function. As an illustration from the past, when my husband returned from work, our calm and peaceful cat began to race madly around the apartment. « What ‘s wrong with that animal ? » my husband protested. « It’s you » I answered. « He was just fine before you came in. » My husband has that effect on me too. Though he may appear the calmest of men, he projects discordant energies which I absorb and which bunch up my back. I’m so tense when we are driving in the car together. I assume that the central nervous system fluid flows are compromised as well as signals from the Autonomic Nervous System leading off the spine.
YOGA : One possible solution to getting some control over the Autonomic Nervous System, hence venous blood flow, is the practice of Yoga.
Yoga practitioners have demonstrated control of their heartbeat, that is to say, the Autonomic Nervous System. Doesn’t that suggest that Yoga could relax the smooth muscles of the veins which in MSers may go into spasms under stress leading to a blood « back jet » ?
I’ve never tried Yoga. I suppose I must break down and follow a You Tube demonstration of Yoga and Meditation techniques. I hate turning my mind off. Would it really be possible to get control over the smooth muscles of the veins ?
I regretfully must confess that the mere thought of leaving the house to keep an appointment stresses me so that my walking becomes laboured. Yes, that is neurotic. I should do something about it. (One reason I avoid neurologists.)
And more, I need a travel plan, otherwise I’m better off staying at home. While traveling by car I should stop every 2 hours to walk. Get some massage every night. Learn to Meditate, practice Yoga. Visualize relaxing not just my bunched up shoulders but my VEINS, the very interior of my body. I’ve never really tried. Survival fears may force me to it.
For information see https://isnvd.org/
To view the Position Statement of the International Society for Neurovascular Disease entitled, "Recommendations for Multimodal Noninvasive and Invasive Screening for the Detection of Extracranial Venous Abnormalities Indicative of Chronic Cerebrospinal Venous Insufficiency", please click here.
The Annette Funicello Fund sponsored research presented at the ISNVD conference 2017.
Here is the program pdf:
http://isnvd.org/sites/default/files/IS ... 2017_1.pdf
Sesssion 3 13.30 – 14.30 - Annette Funicello Presentations
Chairs: Paolo Zamboni – Carol Schumacher
1. J. Winny Yun: ‘Neurolymphatics and MS’
2. Helen Kavounidas: Update on Australian CCSVI’
3. Robert Zivadinov – Follow up of AFRF
4. Marcella Lagana: ‘Phase contrast MRI measurement of arterial-venous-CSF flow
5. Nicole Ziliotto: ‘Exome sequencing and transcriptomic analysis in jugular wall for
detection of CCSVI biomarkers in MS’
See Dr. Zamboni CCSVI Research:Brave Dreams Clinical Trial Progress Reports - 2016/2017www.msnetwork.org/expectations/brave-dreams-overview.htm
I’ll finish this blog post with a study referring to
« Effects of yoga on the autonomic nervous system, gamma-aminobutyric-acid, and allostasis in epilepsy, depression, and post-traumatic stress disorder.
Med Hypotheses. 2012 May;78(5):571-9. doi: 10.1016/j.mehy.2012.01.021. Epub 2012 Feb 24.
Streeter CCGerbarg PLSaper RBCiraulo DABrown RPAuthor information
A theory is proposed to explain the benefits of yoga practices in diverse, frequently comorbid medical conditions based on the concept that yoga practices reduce allostatic load in stress response systems such that optimal homeostasis is restored. It is hypothesized that stress induces (1) imbalance of the autonomic nervous system (ANS) with decreased parasympathetic nervous system (PNS) and increased sympathetic nervous system (SNS) activity, (2) underactivity of the gamma amino-butyric acid (GABA) system, the primary inhibitory neurotransmitter system, and (3) increased allostatic load. It is further hypothesized that yoga-based practices (4) correct underactivity of the PNS and GABA systems in part through stimulation of the vagus nerves, the main peripheral pathway of the PNS, and (5) reduce allostatic load. Depression, epilepsy, post traumatic stress disorder (PTSD), and chronic pain exemplify medical conditions that are exacerbated by stress, have low heart rate variability (HRV) and low GABAergic activity, respond to pharmacologic agents that increase activity of the GABA system, and show symptom improvement in response to yoga-based interventions. The observation that treatment resistant cases of epilepsy and depression respond to vagal nerve stimulation corroborates the need to correct PNS underactivity as part of a successful treatment plan in some cases. According to the proposed theory, the decreased PNS and GABAergic activity that underlies stress-related disorders can be corrected by yoga practices resulting in amelioration of disease symptoms. This has far-reaching implications for the integration of yoga-based practices in the treatment of a broad array of disorders exacerbated by stress.
Copyright © 2012 Elsevier Ltd. All rights reserved."
Why not Yoga and MS ?
Tags : Multiple Sclerosis, MS treatment, Autonomic Nervous System, CCSVI, Annette Funicello, Annette Funicello Research Fund for Neurological Disease, ThisisMS.com, Dr Owiesy, Yoga