Leading the Way – Report, Canada – 2014

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Leading the Way, Saskatoon, Canada – 2014
Report by Kerri Cassidy

The fourth annual conference of the National CCSVI Society of Canada was held in Saskatoon 4-5th October.  The main focus is education of issues and research in Neurovascular health and bringing together many perspectives from experts; both the medically trained and people who live with Neurological conditions.

I was pleased to attend and also to speak on the Collaboration Imperative (link).  Even more, I was thrilled to be able to introduce Dr Helen Kavnoudias who shared the research that CCSVI Australia is supporting in Australia at the Alfred Hospital.

Here are some of the highlights:


NCS name change
Dr Bill Code and Dr Sandra Birrell appeared on CTV that weekend to explain that the organisation’s name has changed to the Canadian Neurovascular Health Society.  An important move as understanding of neurovascular health expands beyond Chronic Cerebrospinal Venous Insufficiency.  Not only is it about extra cranial abnormalities but the many things that can impact the flow of blood and cerebrospinal fluid through the central nervous system.  The focus is also on ‘health’ rather than ‘disease’ bringing a different perspective on how we can achieve the best health possible.

Star Phoenix interview
Prior to the conference I had the opportunity to speak with a reporter from Star Phoenix to not only highlight the conference but to share the contribution that Australia is making.  Check out the article here

Day 1

Conference officially opened
Hon Ralph Goodale commenced proceedings by stating “The work is not done yet.  We need to get it done.  And we need to answer the questions.”

Kirsty Duncan MP advised that she has tabled a new bill to be debated in the next parliament (Canada).  She reminded us “the best science should be done so we can get the best answers… a strategy from the lab to the clinic to parliament.”

Arterial pulse and endothelial health
Dr Berhard Juurlink was struck with the similarities between normal pressure hydrocephalus and MS.

He went on to say that blood is pumped by the heart in a pulsatile manner.  By the time it reaches the capillaries the flow is smooth – there should not be turbulence as it impairs blood flow. Too much turbulence can initiate inflammation and leakiness.  There is evidence of increased intracranial capillary pressure, Gorucu et al. 2011.

“I can’t see how obstruction in the jugular vein does not increase pressure in the superior sagittal sinus.” Lifestyle can improve arterial compliance, exercise, diet, meditation, etc.

The venous system from the fetus to dementia
Dr E. Mark Haacke, shows that we can now map out the blood vessels in fetus development, including the placenta.

Some interesting points:

  • Over 50% of MS patients have higher iron deposition than normal
  • Measuring mean transit time shows if there is a blood flow deficit by noting changes in oxygen saturation.
  • Caffeine decreases blood flow to the brain and can be seen on MRI
  • It is believed up to 35% of dementia cases may be caused by vascular degeneration
  • People can have vein stenosis that does not disrupt the flow.  You need to measure the function of the vein in order to draw a conclusion – stenosis is not enough.
  • A large number of pwMS fall below 50% blood flow coming from the jugulars when supine – this is not normal.

Venous Distension Reflex
Dr Michael Arata suggested that the sympathetic tone of vessels may be the issue in some cases.
Blood pressure appears to be abnormal in many pwMS, either too high or too low.  After the angioplasty the pressure tends to improve.


Day 2

“You can’t fake mobility”
Hon Mark Doherty opens with his story of being treated for CCSVI in Bulgaria four years earlier.  A touching video showing the difference in how he walked into the clinic and then walked out.  He absolutely glowed – what a great man to share his story.

Endothelial Health and risk factors
Dr Bill Code shared how inflammation, oxidative stress and autoimmune factors impact the endothelium.  Hypertension and smoking is most associated with CCSVI.  Dr Code recommends smoking cessation prior to any angioplasty procedure.

Also discussion on gut health – reduce that fat, round up being used on crops and benefits of Lithium.

We need a multimodal approach to CCSVI.
Neurologist, Dr Robert Zivadinov, Buffalo.

CCSVI is bigger than MS, we see it in ageing and Parkinson disease.  The question is, what impact are these abnormalities having on the central nervous system?  CCSVI leads to reduced blood flow, increased venous pressure, altered CSF and drainage.  It is linked to headache, brain fog, autonomic control and not just in MS.  Angioplasty is not a complete treatment for these abnormalities, we need to develop better methods and tests.

Jugular reflux is mostly due to valve incompetence.  This is often seen during valsalver manoeuvre.  Few people have spontaneous venous reflux.

Intraluminal abnormalities are real and more prevalent in MS than health controls.   These abnormalities are likely to be congenital and may create reflux and perhaps affect the blood brain barrier – although this is not proven yet.  Stenosis is not uncommon in healthy controls – what does this mean? Ultrasound alone is insufficient to answer this question.

In the last four years a large number of studies have been performed by Neurology (mostly ultrasound) to discount CCSVI however both invasive and non-invasive methods are required.  Many say ultrasound studies have discounted CCSVI and that other diagnostic methods are not needed, “I disagree.”  We need more balance in the literature due to the polarisation between Neurology and Vascular.

Upper cervical research
Dr Gordon Hasick spoke of looking at health optimisation rather than focus on disease.  Symptoms of mild traumatic head injury (MTBI) are similar in MS, headache, cognition, fatigue.  There is evidence for altered venous drainage and intracranial compliance in MTBI which is similar to MS outflow patterns in CCSVI.

We “put people’s heads on straight” to correct C1 & C2 and we believe this influences autonomic nervous system and blood pressure.

The Collaboration Imperative
Kerri Cassidy presented on the need for all parties to unite and work together
Read full transcript of speech by our CEO Kerri Cassidy

Update on the Alfred Trial
Dr Helen Kavnoudias, lead researcher at The Alfred for the randomised, blinded, controlled study of percutaneous transluminal angioplasty (PTA) for extracranial vein stenoses in patients with multiple sclerosis.

After treating 53 people with MS for venous abnormalities in early 2010, the Alfred group felt a trial was necessary.  We have found the procedure to be safe and well tolerated.  The study is fully powered, at completion there will be enough participants to say the results could not have happened by chance.

Compelling images of how venous flow was restored using angioplasty were shown.  Little is written about veins in the medical literature.  Veins are highly compliant vessels which makes the study of blood flow difficult.

There are only small differences in treatment/control patients at the six month mark.  Peg and PASAT test appears to be separating.

27 people have reached at least the 6 month follow up time point.  These people have been randomly allocated to the placebo/treatment group 13/14.  The first two participants have now completed the two-year process.

Dr Helen Kavnoudias described in her presentation how the study was done, what can improve and the introduction of new and better bio markers.  Identifying which tests are useful has evolved overtime such as perfusion studies, arterial compliance and blood pressure.  This process has been really worthwhile as we are far better at assessing outcomes than we were two years ago.

Biochemical factors in Alzheimer’s disease, prevention and treatments.
Dr William Shaw stated that 50% of the population over 80 years has Alzheimers.  APOE genotype increases the likelihood.  Red wine appears to be protective. 32/40 studies found memory deficit when individuals had mercury exposure with autopsy studies finding mercury on the brain.

Candida is a factor in autoimmune disease and may be a trigger.  Certain fats helps to feed the brain, glucose is primary brain food.  Coconut oil is a good addition to the diet.

Creating a mindset for recovery
Dr Teri Jaklin began with the Einstein quote, “Great spirits have always encountered violent opposition from mediocre minds.”

There is no single cause, no single cure and no quick fix.  Our systems are interconnected and nothing happens in just one system.  Our environment impacts our health.  Inflammation has various origins, things such as stress plays a role.  We need to work through all levels spirit/psychological/function/physical for recovery.

Final remarks
Some good relationships were made over the weekend as Australian research contributes its learning and strengths as well as collaborating with international experts who can add insight to the Australian trial results.  The bottom line is the input of many perspectives, researchers, clinicians, people living with neurological conditions will indeed lead the way.  Congratulations to the team at the Canadian Neurovascular Health Society for a great weekend.

This summary falls short of the huge volume of information that was provided  and I highly recommend you obtain the DVD.   This will be available through http://www.nationalccsvisociety.org in due course.  For those in Australia you will be able to order directly through our website when they become available, www.ccsviaustralia.com.au.

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