Feature Article in The Globe and Mail

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Feature Article in The Globe and Mail

Postby cheerleader » Fri Nov 20, 2009 7:07 pm

The Story of Paolo and Elena...



Labor of Love leads to breakthrough in treating MS

makes my heart sing,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby ozarkcanoer » Fri Nov 20, 2009 7:17 pm

cheer..... Thank you for posting this. Just what I need right now.

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Postby bestadmom » Fri Nov 20, 2009 7:41 pm

It's a good story, and the reader comments at the end are interesting, to say the least.
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Postby radeck » Fri Nov 20, 2009 7:41 pm

redundant
Last edited by radeck on Sat Jan 16, 2010 6:48 pm, edited 1 time in total.
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Postby CureIous » Fri Nov 20, 2009 7:53 pm

Touche! Ole! and a whoo hoo! Very nice.

Yes the comments are interesting, I almost signed up to reply but what's the point? People need to come here and check it out for themselves from A to B and make an informed decision, not ask the local MSS chapter what THEY think about it...
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby Ruthless67 » Fri Nov 20, 2009 8:02 pm

I didn't know about Dr Z's wife having MS, what a wonderful and touching story of love and discovery. And the other storys were remarkable as well. Thanks so much.
Lora
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Postby Dovechick » Fri Nov 20, 2009 8:16 pm

radeck wrote:This article is absolutely perfect in every way. Wow. As if written by you or Marie.

Congratulations Mr. Picard, of all the journalists writing about CCSVI you've done by far the most accurate job.


The Globe's story is good (but not as technically competent as Marie's) and provokes the usual reaction in the comments. There are the MS sufferers who are saying GET ON WITH IT, the political BIG PHARMAs explanation for delays, the cautious Medical Community, the individuals plugging alternative remedies and those advocating changes in lifestyle.
My daughter has been the subject or tried most of the suggestions made by responders and believe me none of the proffered treatments have worked, so what have we to loose to give this a try? And we don't have time to wait, every month brings new deficits and every relapse lasts weeks and months. No time to delay, nothing to loose, whatever risks we are taking is nothing compared to what she may end up like in a couple of yearss... If she lives that long!
Last edited by Dovechick on Fri Nov 20, 2009 9:09 pm, edited 1 time in total.
Michele,  warrior4MS, mother and champion for Ella, the MSer. The solution is out there we just have to ask the right questions.
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Postby cheerleader » Fri Nov 20, 2009 8:24 pm

Ruthless67 wrote:I didn't know about Dr Z's wife having MS, what a wonderful and touching story of love and discovery. And the other storys were remarkable as well. Thanks so much.
Lora


Lora...
When I met Dr. Zamboni in Bologna last September, he told me about Elena...and we connected as two spouses who had both prayed for answers. When CTV contacted me last September (thanks again to Ashton Embry) I suggested the story of love and commitment and Dr. Zamboni's journey would help folks understand why he's been so dedicated to helping MS patients. I am so happy that he opened up and shared his personal life with the reporters- this is a side of him we haven't seen in his research papers!

We'll probably be getting lots of newbie postings in the next few days...the facebook page has been getting lots of hits. Should be interesting. All hands on deck!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby catfreak » Fri Nov 20, 2009 8:24 pm

This is a great article. Thanks Joan!!
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby ErikaSlovakia » Sat Nov 21, 2009 12:26 am

Very important article!
Bravo!
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby mrhodes40 » Sat Nov 21, 2009 11:46 am

It is a wonderful article I liked it a lot. IT is a sweet story but how fortunate that Dr Zamboni had such a perfect background to do the looking

The usual "this can't be it because....." comment shows how strong our collective belief in the current paradigm is.

How exactly is it that vitamin D deficiency causes autoimmunity? Of course that question is completely up in the air, it remains a hypothesis. Yet it is offered as proof that this can't be it! "MY hypothesis is better than that one" :lol:

Thank you for the compliment Dovechick! I am glad to add to the discussion in a good way.

Did anyone notice the answer to our long wondered question "what is that liberation 4 fold decrease" was answered? The answer is that active lesions went from 50% to 12 %, as noted in this article. But the graph in the cxsymposium papers was on relapses. Bingo! mystery solved.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby sou » Sun Nov 22, 2009 5:08 am

And this 12% was very strongly correlated with re-stenosis...
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Loobie » Sun Nov 22, 2009 9:25 am

Marie,

I got in on the comments and got 'sucked in'. I quickly bowed out and thought, "your decision" but I feel we will be vindicated. Viva la CCSVI!
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