Canadian Documentary ????!!!!

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

Postby Ruthless67 » Sat Nov 21, 2009 7:41 pm

I cried too......
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Postby bestadmom » Sat Nov 21, 2009 7:42 pm

It is an embarassment, and it's the truth. (the ms societies' reaction)
Last edited by bestadmom on Sat Nov 21, 2009 7:57 pm, edited 1 time in total.
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Postby ozarkcanoer » Sat Nov 21, 2009 7:53 pm

:( :(

cheer, I'm not on Facebook but my husband is. I've never done Facebook.

I would love to help.

:( :(

What we ARE doing is making plans to revisit all our neurology/physician/Hope Center/research contacts here in St Louis and drop off DVDs of "The Liberation Treatment" and copies of Zamboni's original paper and his upcoming November 24 paper. We hope to be prepared to do this on Tuesday when his new paper becomes available.
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Postby Axiom » Sat Nov 21, 2009 7:55 pm

CureIous wrote:I thought Dr. Dake would have been on there no?

Mark.



ozarkcanoer wrote:I wonder why there was nothing on Dr Dake ??



They were planning on shooting a segment with Dr. Dake, but the timing of the filming ended up being quite rushed, and Stanford requires i's dotted and t's crossed (ie: stacks of releases signed by anyone involved) so they chose to wait until they could be better prepared.
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Postby zap » Sat Nov 21, 2009 8:11 pm

I've been sending the link to this video to so many people ... amazing.

Cheerleader - so many people on Facebook asking about how to find treatment, and looking to take part in the trial - any thought of posting a statement regarding Dr. Dake and the stent procedure? They'll find out sooner or later, and when his calendar is booked to the moon, perhaps it will spill over into pressure on other doctors around the country to help take up some of the slack ...
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Postby ozarkcanoer » Sat Nov 21, 2009 8:21 pm

I am planning next week to ask my PCP for a referral to the most appropriate interventional radiologist at the Washington University School of Medicine in St Louis. When I return home from Detroit (my appt. with Dr Haacke is December 7) I will have a copy of images of my brain and neck that I can take with me to an appointment. I (obviously) don't know if any stenosis will be apparent on my scans, but from all the evidence from Dr Zamboni, I should have stenosis. I hope this will all work out. If this doesn't work, then I will think of another tactic !!!
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Postby CureIous » Sat Nov 21, 2009 8:26 pm

Axiom wrote:
CureIous wrote:I thought Dr. Dake would have been on there no?

Mark.



ozarkcanoer wrote:I wonder why there was nothing on Dr Dake ??



They were planning on shooting a segment with Dr. Dake, but the timing of the filming ended up being quite rushed, and Stanford requires i's dotted and t's crossed (ie: stacks of releases signed by anyone involved) so they chose to wait until they could be better prepared.


Thanks, I thought maybe Dr. D had enough exposure as it is and declined lol. No matter, since they zoomed in on our site here. I told my wife is someone wants it bad enough they will look. After all most of us here didn't get a step by step referral we checked it all out on our own.

I don't know what it is, but human nature just has this thing about seeing things on tv, real humans being interviewed, that carries so much more weight than a 1,000 links...

Well I hope the hopeful lurkers that end up here will introduce themselves! Water's fine, jump on in!

Mark.
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 cheerleader » Sat Nov 21, 2009 8:43 pm

Trust me, Dr. Dake wanted to be part of this...someday the story will come out. Would love to tell, but can't. Stanford decided it was better if he didn't speak out- but because CTV came to me and Jeff, he said we should still talk on camera and use Jeff's MRV that he took. So, he was with us in spirit. When he was cancelled, I told Avis that she and Elizabeth needed to go to Italy and tell Dr. Zamboni's story- and I'm so glad they did. That's what needs to be told...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby bestadmom » Sat Nov 21, 2009 9:02 pm

I'm on the FB page as a follower and I'm astounded. Over 1000 followers. There will be 10,000 soon enough. The posts are frantic and excited.

I think some of the backgound stickies from here will need to be copied over there.

Joan, I think administering the FB page is going to become a full time job for awhile. Like 24/7/365. You are going to need help for sure.

Telling the story of Dr. Zamboni humanizes things in a way that makes you know this is not just about a doctor doing his job. Between you and Jeff and your son, who are amazing, and Paolo and Elena, it is a sincere story, motivated by love, not money.
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Postby mrhodes40 » Sat Nov 21, 2009 9:09 pm

Bill and I are filled with the same gratitude and tearful joy at this wonderful documentary. It exceeded my expectations and is in my view absolutely perfect. I am so grateful for it.

Thanks to Joan and Jeff for going out there and sharing this with the world

This makes the whole idea that this stenosis is a circulatory issue and that it needs addressing so clear. Once again I am struck at the absurdity of people living with blocked veins for 5 years while the MS medical community thinks up ways to test whether or not this is the cause of MS to their satisfaction, as if that is the only reason to consider restoring circulation, and as if only their opinion about a human body and optimal function matters. Regardless of where it occurs in the sequence of events, the person must surely do better with good blood flow.

Dr Zamboni said it best: people will lose things they will not get back and that weighs heavy on him.

What a wonderful documentary!

Boy I loved the extended versions did you all watch all of those too? Man! We are all so blessed.
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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Liberation Treatment Q & A

Postby Shayk » Sat Nov 21, 2009 9:11 pm

Terrific!

I'm not on FB so can't help, but another link from CTV News is their W-5 Liberation Treatment Q & A

Very nicely done--even includes a statement about the possible role of Vitamin D we've been discussing on the "geographic" thread.

Sharon
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Postby vendredi5h » Sat Nov 21, 2009 9:33 pm

CureIous wrote:I don't know what it is, but human nature just has this thing about seeing things on tv, real humans being interviewed, that carries so much more weight than a 1,000 links...

That is so true Mark! TV is very powerfull. Reading information, documentation, papers do not pass the "humanity" of its author. But looking at people telling the same thing is way more "connecting", credible. It looks like all the non-verbal subtilities of the people give us a bunch more confidence in them... and what they are saying. Specially when it's a first contact with the subject discussed.

Yannick
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Postby radeck » Sat Nov 21, 2009 9:48 pm

redundant post
Last edited by radeck on Sat Jan 16, 2010 7:40 pm, edited 1 time in total.
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Postby mrhodes40 » Sat Nov 21, 2009 10:01 pm

Did you notice that Dr Zamboni recommended in the extended version that docs go ahead and doppler 100 normal people THEN look at the MS patients and they will see "right away" the difference.

This suggests to me that even though a doppler person does dopplers all the time, the ones done for this are different enough that you need experience to see what it is he is talking about. That is the bugaboo--I can;t pay 8 thousand dollars for a MRV every time I need evaluation, but 500 for dopplers is reasonable

Dr Haacke is right we patients have to demand this of the medical community.
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 radeck » Sat Nov 21, 2009 10:08 pm

redundant
Last edited by radeck on Sat Jan 16, 2010 7:41 pm, edited 2 times in total.
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