Report on the 7/26 Sclafani CCSVI Symposium

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

Report on the 7/26 Sclafani CCSVI Symposium

Postby marcstck » Tue Jul 27, 2010 12:01 pm

Posted this to my blog, thought you folks would find this interesting. Unfortunately, I missed the morning session because I've recently been sick (actually hospitalized), and my stamina is just coming back. Still, the afternoon sessions were very illuminating...

http://www.wheelchairkamikaze.com/2010/ ... osium.html
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Postby aliyalex » Tue Jul 27, 2010 12:26 pm

Thanks Marc. Very happy to see you back.
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Postby Cece » Tue Jul 27, 2010 2:54 pm

Thanks, great report, it sounds like some good work was done there yesterday.

Sorry to hear you were hospitalized, that is concerning.
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Postby selkie » Tue Jul 27, 2010 3:41 pm

Thank you, Marc - I'm so cut off from the mainstream of information (live in Hawaii) that I really appreciate those of you who help keep us informed who live in rural areas. Thank you - much for us to learn, I see.

Still, I'm willing to be a guinea pig and help the doctors learn.
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Postby MS_HOPE » Tue Jul 27, 2010 3:43 pm

Thank you!! So helpful!
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Postby Trish317 » Tue Jul 27, 2010 3:55 pm

Excellent report, Marc. Thank you! I couldn't agree more with your wish for neurologists and vascular specialists to work together in learning more.

Sending good thoughts that you're feeling better.
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Postby ozarkcanoer » Tue Jul 27, 2010 3:55 pm

Thank you Marc. I hope you are recovering well from your hospital visit. I find it very interesting that the learning curve for optimizing the procedure is so steep. It makes me wonder how much real information can be derived from a 30 person study such as the one at Buffalo. It would seem to make sense to work out the technical aspects of performing the procedure first before trying to measure it's efficacy. It looks like I may be a data point on someone's learning curve sometime soon :) .

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Postby msgator » Tue Jul 27, 2010 6:42 pm

great commentary as always. Take care of yourself and get your stamina back.

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby mrhodes40 » Tue Jul 27, 2010 6:58 pm

Nice post Marc! You are smart and on it as usual... I am sorry to hear you were sick. I am so glad you are back and on the mend! I hope it is s uneventfl recovery.


It makes me wonder how much real information can be derived from a 30 person study such as the one at Buffalo. It would seem to make sense to work out the technical aspects of performing the
procedure first before trying to measure it's efficacy


This keeps me awake nights....................... I am serious. :!:
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby Rokkit » Tue Jul 27, 2010 7:19 pm

mrhodes40 wrote:
It makes me wonder how much real information can be derived from a 30 person study such as the one at Buffalo. It would seem to make sense to work out the technical aspects of performing the
procedure first before trying to measure it's efficacy


This keeps me awake nights....................... I am serious. :!:

This is why the IRB's of the world have got to find a way to let the docs work. It's the only way meaningful large-scale treatment trials will get designed.
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sclafani

Postby blossom » Tue Jul 27, 2010 7:32 pm

thank you, as always you do not disappoint. sorry to hear you were in the hospital. i send you now, my belated get well and stay well wishes.
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Postby japentz » Tue Jul 27, 2010 8:27 pm

Thank you Marc! An excellent read. I always enjoy what you write.

I hope you are feeling better. :)

Sincerely,
Judy

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Postby MrSuccess » Tue Jul 27, 2010 10:12 pm

mrhodes40- who are you quoting ?

And why would this keep you awake at night ?

It stands to reason that this new idea would be tested out on a small sample of patients ......... due to the high costs ..... and the animosity this is causing ..... in some circles .

I would have been thrilled to see a 10 person study funded and examined in complete detail.

The Buffalo study will be of value.


Good to see you posting again .




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Postby Cece » Tue Jul 27, 2010 10:15 pm

Dr. Sclafani has raised the same concerns in his thread, that the people conducting trials may be inexperienced with performing the procedure. There is a risk that this might reduce or scuttle the results.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby costumenastional » Tue Jul 27, 2010 11:31 pm

Thank you VERY much for everything. Needless to say that i am sorry for your recent health troubles. Hope they treated you well...
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