Multiple Sclerosis (MS) Support Group

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momshere 02/09/2010

I have a daughter who is really interested in this treatment. I myself dont know that much about it, but what she has described sounds very promising, but at the sametime scarey. Just wondering if anyone has tried this treatment or has any input about it. Thank you for any replies:)
She goes tomorrow to her ms doc to see if he has any answers for her about this. I hope it goes well:)

deleted_user 04/03/2012

I know this post was made about 2 years ago, but if your daughter hasn't got the treatment yet, I do know of a clinic in Dayton, OH that offers the treatment. They are very good at what they do and can answer any questions you may have, prior to making the decision.
This is a link to their website, if you want to check it out.
http://daytonir.com/LiberationTreatmentCCSVI.aspx

Hope this helps!

deleted_user 04/04/2012

wow 2 yrs ago- how did it get passed us!!!

deleted_user 04/04/2012

Nothing dangerous at all about the treatment to correct CCSVI.
Angioplasty is non-invasive, & done on an out-patient basis. Apparently, clinics in the US where this is performed often, now only experience re-stenosis in about 10% of cases. Wish I could go there.

Have been tested fall 2009, 4 of 5 veins blocked.

Online check about CCSVI sites as well as "angioplasty for all."

mjideas 04/04/2012

There is a great deal of info on here and other websites about this procedure. It is a minimally invasive procedure using angioplasty. Here is a link to the latest I read about it.

http://ms.about.com/b/2012/03/31/interventional-radiologists-see-benefit-in-treating-ccsvi.htm?nl=1

Results seem to vary but I think there should be a lot more support and info on this procedure in both the Neurology community AND the MS society.

if your daughter already had it done I am sure we would like to hear how she did. Do a search here - you will find members who have had it done. I am considering it.

Melanie

HCARD 04/04/2012

I know of 4 who have tried it. all had great results for a few weeks then right back where they started and very costly

deleted_user 04/05/2012

I think that the results depend on which clinic that does the treatment,
and how much experience that they have. The goal is to avoid re-stenosis, Californa is having good results, (only 10% are re-stenosing).

Is that a word?

lchoppel 04/06/2012

As community leader I feel it is partly my responsibility to set certain facts straight about the condition, CCSVI and the procedure carried out to address it.

Restenosis (narrowing of the veins) following the procedure occurs in the majority of cases, not as has been stated here (in 10% of the cases). The way this treatment is carried out is by inserting a balloon through the groin up to the veins which have been effected. To say this procedure is non-invasive would be like saying open heart surgery can be done under local anesthetic.

Confirmation of what I am saying and more information about CCSVI and the procedure to address it can been seen here:

http://www.msassociation.org/news_center/article.asp?a=ccsvi

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