Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. This blog is informative only--all medical decisions should be discussed with your own physicians.

The posts are searchable---simply type in your topic of interest in the search box at the top left.

Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the immune paradigm of MS, and continues the 20 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.

To learn how this journey began, read my first post from August, 2009. Be well! Joan

Wednesday, October 21, 2015

Canadian Neurovascular Health Conference

Congrats to the Canadian Neurovascular Health Society!!!  www.cnhs.ca

I'm very glad I was able to hear all of the presenters at the conference in Vancouver this past weekend.  CHNS board members Dr. Sandra Birrell, Landon Schmidt, Michelle Walsh, Dr. Bill Code, Dr. Bernhard Juurlink and Dr. David Christie put on an incredibly informative (and fun!) event.    It was all about making Connections---between patients, doctors, caregivers and information.  For those who wish to hear all of the speakers, I'd really suggest purchasing the DVD set of the conference to learn more.   http://www.eventbrite.ca/e/neurovascular-connections-richmondvancouver-2015-tickets-15062769148

This is going to be a very brief overview of some of the discussion----and my post is most woefully incomplete.  I have my own interests in what I think is note-worthy, and that's certainly not the same for anyone else.   But I hope this gives you an idea of the weekend.  All of the speakers were great.

Dr. Bill Code started out the conference with this important statement---"There are no silver bullets.  We need a combination of approaches in dealing with MS.  The pieces of the puzzle are different for each one of us."  He outlined all of the different approaches we would be looking at over the course of the weekend---and he was right, there was something for everyone!  I don't write about important discussion on stem cells, Lyme disease, sleep, exercise---so again, forgive the brevity.

David Ultrianen from MS MRI in Detroit (or as I call them, Team Haacke) had some very interesting slides on their recent studies of jugular pathology in those with MS who have stenotic jugular veins.
Input from the carotid artery and output from the jugular veins should be equal, but in those with CCSVI, it is most certainly not.  Patients with stenotic jugulars show much more flow through collateral veins.  Iron, shown on SWI MRI, builds up retrograde to veins.  The transverse sinus drains the basal ganglia--and there is increased iron buildup in this area in many with CCSVI.  David is busy studying cerebral micro bleeds (CMBs) and finding that SWI technology is a good means to measure this phenomena.  Because of the Gladstone Institutes' recent research showing how a drop of blood can activate the immune response in the brain---looking at plasmic deposition into brain tissue is hugely important.

Dr. Ivo Petrov has been doing some very interesting studies, looking at specific parameters before and after he treats patients for CCSVI.  He has treated over a thousand patients now, at the Tokuda Hospital in Sofia, Bulgaria, and has a wealth of knowledge and data.  One measurement I found truly fascinating was a blood/gas analysis study where he measured CO2 and oxygen levels in patients he treated.  He has found that the O2 pressure is much less than normal in those with CCSVI and the CO2 levels are higher.  Not good for brain health!   Immediately after treatment, these markers improved.  Dr. Petrov has also found that collaterals are highly related to CCSVI, and after stenting the vein, these collaterals disappear and drainage occurs through the IJV.  His studies show that CCSVI is strongly associated with MS.  Looking forward to seeing publications on this.  Nothing in pubmed yet.

Dr. Paolo Zamboni received a wonderful warm standing ovation.  Although he wasn't physically in the room, he could feel the appreciation being sent via Skype, and was visably moved by it.  Dr. Zamboni discussed how his recent work with NASA and the International Space Station has helped him refine a new, operator independent means of measuring venous flow.  He admitted that a major problem and a cause of controversy in CCSVI diagnostics has been the fact that using ultrasound as a diagnostic tool is completey depenedent on the training of the operator.  And this has been confusing and has kept the science from moving forward.  The main difficulty is that the jugular vein is a pulsatile (or moving and pulsing) vessel, and it has different measurements during the cardiac cycle, depending on how much blood is going through at any one time.  Also, the jugular vein is ellyptical, and not a circle, which has also confused cross sectional (CSA) measurement.

His new method of measurement looks at flow velocity and how the jugular venous pulse (JVP) is synchronized with the carotid artery and heartbeat.  By looking at normal subjects, we can see how all three of these measurements are synchronized in a determinate interval of time.  The venous pulse begins with the heart contraction, giving a positive wave up to the brain.  Each movement of the heart is reflected in the jugular vein.

Dr. Zamboni trained astronauts in how to use B mode ultrasound to take video clips of their venous return and JVP on the space station. These video clips are purely data, which were then transmitted to vascular researchers to extrapolate the hemodynamics of flow.  The beauty of this new video clip method is that it's just numbers...like an EKG readout.  You can't give a neurological "opinion" on numbers.  It is, or it isn't, normal.  Dr. Zamboni is already seeing that the distance of waves is much wider and more regular in normals, than in patients with CCSVI.  This new non-invasive method will give us a precise picture of the heart-brain axis, and help end the diagnostic controversy of CCSVI.   It will also help clarify who should be looked at further with venogram, and can be used as a follow-up method for patients after venoplasty treatment.

Dr. Terry Wahls- rock-star of both the MS and paleo worlds- got up to the podium and gave a big shout out to the Embry Family.  She thanked Ashton for putting published research up on his Direct-MS site, which helped her look at how nutrients and diet affected MS.  She said that she wanted to learn how to prevent brain atrophy, and turned to modifiable risks (the things we can change) as a way to heal her brain.  She presented some pretty startling info on how much more sugar we have been consuming since the Industrial Revolution---now up to 153 lbs of sugar per person per year (!!!!!)  Refined sugar is a known creator of inflammation and endothelial dysfunction and linked to all chronic illnesses.  Something to thing about.

She discussed many ways to increase our mineral, micronutrient, macronutrient and vitamin intake through diet, and compared the hunter gatherer way of life to our modern sitting/eating processed food lifestyle.  She was there to sign books after her presentation.  I like Dr. Wahls.  She is no-nonsense, pro-patient, and her personal story is inspiring and very moving.  Dr. Sandra Birrell, president of the Canadian Neurovascular Society, is following The Wahls Protocol, and she and her husband Landon have had great success with this program.   Sandra made sure all of the catered luncheons at the conference were Wahls compliant, and I was so happy to have fresh, organic produce, healthy protein and colorful meals.  Jeff and I travel a lot, and finding healthful and nutritious meals on the road takes a bit of effort.  It was nice to simply show up and fill up my plate with good stuff.

Dr. Philip James presented via Skype, as well.  I was thrilled to get to see and hear him speak in person.  When Jeff first came home from high altitude with several enhancing lesions and received an MS diagnosis, googling hypoxia and altitude took me directly to Dr. James' important research. Here is a note I wrote about him when he came out with a statement on CCSVI in 2011.
https://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/dr-philip-james-on-ccsvi/10150221964462211

Dr. James laid it out there, he does not mince words.  You could feel the frustration in his voice.   He has been publishing on MS since the 1980s, and understands how much MS research has tragically veered from scientific evidence due to pharmaceutical influence.   As he stated plainly,  "Multiple Sclerosis simply means "many scars" and scars are a symptom of healing.  How tragic that we have developed a 20 billion dollar industry which seeks to end this healing."  Wow.

Hypoxia causes both inflammation and MS lesions (Ge, Lassmann, Juurlink) Oxygen is necessary for healing, and the lack of oxygen creates disease.  The primary reason for circulation is to deliver oxygen to our organs.  Medical students are no longer taught the importance of oxygen in healing.  Dr. James has been treating MS patients with hyperbaric oxygen for decades, and has seen great success in his patients.  http://www.taysidemstherapy.co.uk/Documents/Philip%20James%20HBOT%202005%20Paper.pdf

He lamented that part of the problem with HBOT treatment receiving due acknowledgement (aside from pharma industry issues) is simply the word "hyperbaric".  It makes this treatment sound otherworldly---when in fact, it's simply delivering oxygen to a hypoxic brain and spine.  It should just be called oxygen treatment.  The correaltion of HBOT with CCSVI is the fact that venous oxygen is critically important because it allows for correction of any breaches in the blood brain barrier.  HBOT treatment is scientifically accepted as a useful practice for people with MS in the UK, and is funded by the national health association.  Patients only pay a small fee to receive regular treatment.  Would that this were true in Canada, the US and the rest of the world.  Hopefully, with continued research, we will get there!

That's it for my notes---off to enjoy the day with Jeff.
Eat colorful whole foods made by mother nature, not processed by some factory.  Get good sleep, get some UV rays, find something that makes you laugh or sing or smile today.  The research is coming in, and we are all changing the paradigm, a little bit everyday.  Connections matter.

Hope and Healing!!
Joan





7 comments:

  1. Thanks for your always wonderful synopsis! Hugs.

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  2. Thank you so much for summarizing some of the key points and relating it to everything we've talked about for the past 5+ years. Inflammation is linked to disease directly – through the gut/brain connection, blood vessel/endothelial health, and the microbiome. Fascinating, complex and unique for each of us, but with so many common underlying factors that we are beginning to understand disease states and recovery more than ever.

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  3. So nice to meet you at the Conference! My neuro has absolutely no interest in the ground-breaking and paradigm-shifting science that was being discussed there, but my GP asked me about it and actually has several MS patients that follow the Wahl's diet. He wants me to do it too, but offered one word of warning....be prepared to lose a LOT of weight! I hope to see you again next year in Ottawa(and maybe a little thinner)!

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  4. As you know Joan, I was interested in the presentation by Dr James. I hope that a conversation will continue to explain the importance of oxygen in the healing process of low perfusion in people with MS.

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  5. Hi, Joan, Please not that Dr Traboulsee, entrusted with the lives of 100 MS sufferers in the Canadian Trials of venoplasty for MS symptom Relief and who works at UBC in Vancouver was invited to the conference but he DID NOT ATTEND. Dr Traboulsee is not a vascular surgeon and in doing anything related to warm blood flowing in the brain or the heart, he is totally outside his field of expertise. So, we would have expected him to attend, just as a learning experience, wouldn't we? And to maybe get some tips to safeguard the live of his subjects? It seems that in Dr Traboulsee's case, although chimps are no longer used in medical research, he has found another disposable primate to prove his theories. Hopefully, not too many of them will die as he learns venoplasty in trials which will have their results published worldwide.

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  7. Thank you always from me here in UK for lots of informative work .

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