This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Ed, I am interested in finding out details on the video recording of the meeting, if you are aware of a time frame when the file will be posted?

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Don't know, sorry!

Thank you, EdW-uwo, for your detailed answers so far! Would you tell us a little bit more about what Drs. Simka and Dake told (about the procedure)? Is Dr. Dake running or starting a study?

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"There is only one good, knowledge, and one evil, ignorance." Socrates

thanks anyway ed!

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my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

I _think_ Dr. Simka said that in his practice, first they attempt to do a balloon angioplasty, and if that's not successful, they use a stent. He said that in his experience, follow-up Dopplers have been normal one month post-procedure for the most part. He was also of the opinion that MRV isn't as useful as other imaging methods because you can't visualize the actual lesion in the vein.

Dr. Dake spoke about a few different aspects of CCSVI. He seems to feel that there may be multiple pathways which cause blockage of the veins (e.g. some might be congenital malformations, some might be pressure on the vein from another structure in the head, etc.) but that either way, it doesn't matter when it comes to treatment. (One interesting thing he mentioned is something called May-Thurner syndrome, where the iliac vein in the groin area becomes obstructed by pressure from the iliac artery, which runs next to it. I won't go into the pathophysiology, but it appears that something similar could be happening in some cases of CCSVI, where the carotid artery compresses the internal jugular vein.) He emphasized that in his opinion, stents are often better than balloons because they can resist external compression, and have often worked when balloons failed to keep the vein open. He showed some nice images of the flow in collateral veins disappearing as soon as the stent was deployed.

There was some talk about the possibility of setting up a randomized controlled trial comparing Liberation or stent placement with a sham surgery, just to rule out a placebo effect, but there are a number of issues with it. First, it's hard to blind the treatment that a person would receive, because (apparently) you can actually feel the balloon expanding, or the stent being deployed, which makes it obvious that you've received the actual treatment, rather than the placebo surgery. Plus, there are also ethical issues involved in denying the procedure to the patients who are assigned to the placebo arm of the trial. This is something that obviously has to be worked on carefully before anything's done.

I'm not sure if Dr. Dake is running or starting a study, though he did present some results that looked impressive.

Thank you very much for all these interesting information EdW.

The Globe and Mail has an article for Tuesday's paper on the Hamilton Conference

http://www.theglobeandmail.com/

Edw uwo
How many people were at the conference?
Were there many questions asked? especially about treatment? that might indicate some vascular doctor interest?

What were your thoughts about the movement towards treatment for MSers?

Edwuwo,

How many procedures in Poland...Stanford...Jordan ...and Italy?

Thanks in advance.

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María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.

Avis was interviewing and reporting some of the doctors comments.
A young man with severe stenosis (both jugulars) was in the story.
Dr. H said something about a 95pc figure. I could not
understand if it was old information from previous data or new
researchers findings. Did anyone else see the news clip??

I think you might be referring to this?

http://watch.ctv.ca/news/#clip264942

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dx 2002,RRMS,  suspected begin of MS 1978 (age 10)

Dr. Ashton Embry's response to the recent National Post articles....and a little Canadian media history -

absolutely amazing read!

http://www.direct-ms.org/magazines/Embr ... ticles.pdf

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STAY REAL MY FRIENDS

dx 1989, spms

http://www.mrimaging.com/category.80.html (meetings page) has now been updated to include:
"Details of the 2010 SWI study session will be posted soon, please keep checking back.
If you have any questions about this meeting, please contact Rachel Martis-Laze at rdmlaze@gmail.com"
see also bobbi's feb 2 post in the original CCSVI/MS workshop topic:
http://www.thisisms.com/ftopicp-90093-r ... html#90093

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

UK MS Trust comment about the Hamilton meeting



MS Trust welcomes further research into CCSVI
09 February 2010

A number of trials are planned looking at the theory that blocked veins may be a contributory factor in multiple sclerosis.

The theory is that blockages to blood vessels affect blood draining from the brain, a condition known as chronic cerebrospinal venous insufficiency (CCSVI). This causes leakage of iron into the central nervous system, leading to MS symptoms.

Interest is particularly high in north America following a visit to St Joseph's Hospital in Hamilton, Canada by Prof Paolo Zamboni, the Italian doctor who developed the theory. At the meeting Prof Zamboni reiterated that he has never proposed that CCSVI is the sole cause of MS but challenged other researchers to follow up his work to better understand the implications of his observations.

Prof Zamboni's studies identified CCSVI as occurring in people with MS but not in healthy controls or people with other neurological conditions. He also found that surgery to unblock veins led to people experiencing fewer relapses than before the operation.

Further, larger studies are planned in Canada and the USA to better understand the condition and its association with MS. The first of these, in Buffalo, is due to report interim findings shortly.

Prof Zamboni's studies pose interesting questions about MS and the MS Trust supports any further research that helps to answer these questions. We would suggest caution in considering surgery based on what is still a theory that requires further investigation.


http://www.mstrust.org.uk/news/article.jsp?id=3509