This Is MS Multiple Sclerosis Community: Knowledge & Support

On the CCSVI in MS Toronto facebook page there is a link to "The Crescent School Sessions"...there you will find links to some very informative video presentations. It was held on April 25-26....includes info on the McMaster/St.Joe's trial with Dr. Haacke, Dr. McDonald etc.....another one is a question and answer session, also very good and an excellent one with Dr. Dake...all fairly lengthy but well worth watching...lots of excellent info presented optimistically by physicians who all seem to be on the same page. It is nice to actually see and hear them...their names are so familiar that it feels like you actually know them. I feel that they are totally committed to CCSVI and will not give up or back down by any obstacles...

Can't find it... would you post a link?

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

Here's Dr. Dake--
http://www.vvcnetwork.ca/goldfenix/2010 ... dex03.html


Here's the conference:
http://www.vvcnetwork.ca/goldfenix/2010 ... dex01.html

Enjoy! Thanks to the Canadians for making this public-
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

It makes me feel so good to hear Dr Dake talk about CCSVI with such confidence and drive and zeal to help people who are truly suffering. I know science wants measurable outcomes and that is why walking ability and number of lesions are markers for MS progression. But Dr Dake is addressing fatigue and cog fog, two of the symptoms that are not objectively measurable !!! I will add pain to fatigue and cog fog. Quality of life is what we want, not fewer lesions. When I was diagnosed I was told I have 40 lesions on my brain. But I had lived to the age of 60 with NO SYMPTOMS. The onset of my fatigue and pain and insomnia and cog fog was sudden... at the same time as my double vision happened. So I was happy with 40 lesions. If I have CCSVI and I get treated and get my life back, meaning less fatigue and pain I still won't care about the darn lesions.

I am so glad Joan found Dr Dake !!!

ozarkcanoer

just wondering...were you diagnosed with ms at 60?.......if that is so and CCSVI is considered congenital, why would all these symptoms take so long to appear?

Peoples bodies are markedly different when it comes to coping with physiological issues in the body.

What affects one person, won't affect another.

I think it's perfectly feasible that for some people, their body will cope with CCSVI for years, maybe for ever if they are lucky!!

In Bologna-Dr. B.B. Lee (vascular surgeon from Georgetown who headed up the international panel naming CCSVI lesions as truncular venous malformations) explained the difference in length of time and disease progression as it related to Budd- Chiari, which is a liver disease due to venous insufficiency.

Although Budd Chiari is due to a congenital truncular venous malformation, it takes many years to manifest as damage in the liver. There are pediatric cases of Budd-Chiari, and geriatric cases of Budd-Chiari. But the average time the disease is discovered is mid-thirties. It is a chronic, ongoing condition. And by the time it is discovered, the liver is severely damaged and often needs a transplant.

Vascular surgeons know that although the venous system is able to reroute and is redundant, the body can only overcome so much slowed drainage from an organ. The slowed perfusion and mean transit time harms the organ over time.

There are no brain transplants available....which is why finding venous stenosis and insufficiency in the CNS is so very, very important.
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Cheer....thank you for your explanation.

It's absolutly amazing to listen to the details they provide. Are the presentations avaibable anywhere, too?

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

Wayne posted more video today on CCSVI Ms Toronto.

Q and A Session:

http://www.vvcnetwork.ca/goldfenix/2010 ... dex02.html

I got the most from this video because of dr m's explaination of the
procedure and who is actually properly trained and a great hint
of a very positive story to come out of Europe shortly.

Does anyone else think this should be re posted with it's own thread with a title that reflects that Dr. Dake is making some incredibly important points?

He is speaking out about the fact that the symptoms currently atributed to MS could be symptoms of venous obstruction, and that angioplasty (including the use of stents in veins) is performed every day in every hospital in North America. The veins which are commonly treated with this approved procedure are the iliac and subclavian veins and the veins associated with dialysis outflow.

I have forwarded the link to Dr. Kirsty Duncan along with a letter asking that the subcommitte see the video.


I told her I am curious to know what the costs are associated with those procedures and specifics of the billing for these procedures within our existing Canadian health care system.