This Is MS Multiple Sclerosis Community: Knowledge & Support

[allynz]

If I wanted to educate my doctor on CCSVI where would I begin? I know I can google - I've done that and read so much myself but I can't remember where to find the good things I've seen that would be suitable for a doctor, yet I know I've seen them. The NCS 40 min youtube video is of course a must - but can you suggest a good technical summary, particularly in relation to technique, that a doctor would understand.

[Cece]

Is this an IR or a neurologist or a general practitioner?
If it is the IR who is going to be doing the procedure, then I have to suggest going with an IR who is already educated and experienced in CCSVI. There is a learning curve, it's not immediately obvious and simple where and what and how to treat. If it's not possible to go with an experienced IR, then you want to make sure that the IR you have found has been in the neck veins before and is experienced in IR, if not in CCSVI. Also that he'd be willing to be conservative in his techniques, so that less vein damage can be done while he is learning on the job.

For articles, there's this but it's from 2010 and I haven't reread it for what has changed since then: http://bmctoday.net/evtoday/2010/07/art ... ufficiency

There's Zamboni's original research.

There's the consensus documents coming out of ISNVD. I think they're here: http://www.isnvd.org/files/ISNVD%20Abstract%20Book.pdf
Consensus documents might be your best bet.

[cheerleader]

CCSVI Alliance has a searchable database with all the published research, allynz. The site is written for medical professionals and lay people. There are videos from conferences, as well, where treating doctors present the research. www.ccsvi.org

The professional website, where IRs discuss their cases, is the Endovascular Forum-
there are several videos and case discussions--your doctor can search CCSVI and join the discussion-
http://www.endovascular.org/

HTH,
cheer

[MarkW]

In this recent paper Prof Paolo Zamboni describes 'The CCSVI Syndrome'.

http://phleb.rsmjournals.com/cgi/reprint/25/6/269

This paper is a clear statement of the syndrome found in pwMS and others. In academic environments a later paper on the same subject (CCSVI) replaces the authors' thinking as expressed in previous papers. The CCSVI Alliance has many background papers for additional reading but this paper is the place to start. There is no definitive 'how to do a CCSVI procedure' but the starting point of learning must be understanding CCSVI syndrome.

MarkW

[msscooter]

Marie Rhodes book (CCSVIbook.com) is a great resource.

[FLJhawk]

I wouldn't want to go to a doctor for the procedure who needs to be educated about it! If you are looking for treatment, go to one who has done a number of procedures. If and as CCSVI gains popularity and acceptance, more and more IRs will learn the procedure.

But, I did have to explain the procedure to my PCP a little in order for her to order the bloodwork I needed. But, I alone decided on having the procedure done.