CCSVI Presentation for Lay People

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

Postby Ruthless67 » Thu Jul 08, 2010 8:57 pm

Fiddler,

The link below is to the following article.

Denise Manley: Background Information on CCSVI all in one place!
http://ccsvi-ms.ning.com/profiles/blogs ... background

It is very well written and his bibliography is impressive. I have printed out a copy and put in my CCSVI binder of Research Papers and excellent articles on CCSVI that I keep handy and refer to often.

The article might be a great addition to your handouts. Definitely worth a read.

I like the whole power point presentation suggestion ALLOT too, and the keep it simple (kiss) and tell your personal journey to liberation.

Lora
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Postby pegmegrund » Thu Jul 08, 2010 9:41 pm

I was just going to post the Community Care site (Siskin's group), and I see that Ruthless has linked to it above. Here is the link to the source:

http://www.communitycare.com/Practices/ ... ground.asp

It has great info and a comparison to venous insufficiency in the legs...
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Thanks

Postby fiddler » Fri Jul 09, 2010 3:29 am

Good background article, Peg, thanks. Lora, your link takes me into a log-in page... is that meant to be the same article Peg gave us?
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby TMrox » Fri Jul 09, 2010 4:37 am

The article that Ruthless67 recommended is great, full of references and useful examples.

Here are other two articles that could also help you:
CCSVI-How to treat it, where to get treatment & new research
http://www.fondazionehilarescere.org/pd ... rticle.pdf

Zamboni's editorial to the special issue of international angiology
http://www.fondazionehilarescere.org/pd ... 5-ANGY.pdf

This editorial is very well written, not too technical so it is accessible to non MD.
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Postby Ruthless67 » Fri Jul 09, 2010 8:13 am

Yes Fiddler,

It is the same article, so everyone use Peg's link, it's more direct. And it is an excellent article.

Lora
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Postby vivavie » Fri Jul 09, 2010 9:12 am

I am not too good with computers... Is it possible to print Zamboni editorial. It could help me convince some doctors. I don't have their email (not that they would take the time to go look), I need to hand it out. Thanks

I cant even get the smilies or quotes or all the other stuff on this site"!$)(&"%$/?&*%$&((&?

Cognitive loss is one of my bigest... but nobody can see that...
Humiliating, I am (was) an engineer... grrrrrrrrrrrrr
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Postby TMrox » Fri Jul 09, 2010 10:30 am

Zamboni's editorial is only two pages but very informative. It is a good idea to post it to a few docs (or even email it).

In the link provided you should be able to access it (for free) and print it.
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Postby vivavie » Fri Jul 09, 2010 11:05 am

I can access it but it is impossible to print it - there is a lock! How can I by-pass that???
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Postby Rieja » Fri Jul 09, 2010 12:55 pm

Nope the linked pdf is locked. I don't want to overstep boundaries and unlock it in case there is some sort of copyright protection. Best deal is to contact the makers and ask them for persmission.
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Dr4aft is ready

Postby fiddler » Fri Jul 09, 2010 1:17 pm

OK, folks, a draft of my presentation is ready. It's big so I uploaded it to my server service. It's a Powerpoint 2007 file, but if some people want to see it in an older version of Powerpoint (or something else), let me know. Here is the site:

https://sth-se.diino.com/tedrobak/Shared%20Files

The password is euromedic

...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby TMrox » Fri Jul 09, 2010 2:39 pm

vivavie I sent you a private message
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Postby TMrox » Fri Jul 09, 2010 2:58 pm

fiddler,

I really like your presentation. Just have a few comments:

1) Restenoses can occur up to 50% of the time, but this is in the internal jugulars only (if done with angioplasty) Azygous has a very small chance to restenose.

2) Kuwait government has decided to treat all its 600 MS patients with CCSVI angioplasty at the rate of 10 a day, maybe worth mentioning.

3) To my knowledge the countries which have at least one clinic testing and treating for CCSVI (apart from others which you mention) are:
Argentina, Australia, Belgium, Bulgaria, Costa Rica, Egypt, France, Germany, Greece, Italy, India, Jordan, Kuwait, Mexico, Spain, UK and USA

4) Sorry, I did not see in your presentation the follow up testing that you will have. Any Doppler or venography in the future?

5) You might also want to briefly mention the ongoing clinical trials on CCSVI. That is those which are testing for incidence of CCSVI in MS and other neuro conditons and the trial by Buffalo University and Zamboni which are actually testing the impact of the liberation procedure on MS patients.
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Thanks

Postby fiddler » Fri Jul 09, 2010 3:37 pm

Thanks, TMrox. A couple of things, though. I didn't think that Italy had started up again. Also, I'm probably out of the loop (and also realize that I forgotten places like Australia, Costa Rica and Egypt), but are Argentina, Greece, Spain and the UK actually up and ongoing?
...Ted
Dx SPMS in 2004.  Liberated 29/04/2010.
My blog: www.my-darn-ms.blogspot.com
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Postby TMrox » Fri Jul 09, 2010 4:02 pm

I'm certain that Greece is. In the UK the essential health clinic is operating.

I've seen others commenting here about Argentina and Spain, with a few cases already treated recently.
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Postby Downunder » Sat Jul 10, 2010 7:37 pm

Fiddler,
This is a flyer that was organised for our MS Walk in Australia.

You'll have to change Australian references, but it's a good start.

http://www.facebook.com/l.php?u=http%3A ... 2w&h=db5e0
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