Editorial on CCSVI in MS Journal

[agate]

An editorial in the Multiple Sclerosis Journal for October 2013 is sharply critical of the Internet for having over-promoted the CCSVI procedure and raised people's hopes.

I didn't consider the CCSVI procedure myself because (a) it was too costly and (b) I didn't feel there was enough evidence of its effectiveness. But I understand why people did have it done, and I think it's great that some seem to have found it helpful.

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Here's an excerpt from it:

Nonetheless, the enthusiasm within a substantial part of the MS patient community for the “liberation procedure,” fanned by social networking sites and the blogosphere, generated enormous pressures on granting agencies such as the MS Societies and government funding agencies in North America, Europe and Australia to pursue the possibility that CCSVI was a viable explanation for MS. The discussion became particularly animated in Canada where the prevalence of MS is high and the media-generated interest in CCSVI was much greater than elsewhere.^{Only registered and activated users can see links., Click Here To Register...,Only registered and activated users can see links., Click Here To Register...} Although the Canadian MS Society expressed no enthusiasm for the concept of CCSVI, it adopted a publically agnostic position about the hypothesis, no doubt in well-justified fear of antagonizing the large constituency within the MS community whose hopes of a miraculous cure had been aroused by the fevered publicity.

The evolution of the discussion in Canada offers a particularly instructive, and at times disheartening, example of a complex interaction among patient advocacy groups, scientists, non-governmental and governmental funding agencies, politicians, the press and the blogosphere.

[Frog42]

Isn't that what Montel Williams had done?

I looked it up and saw it was experimental when he did it. He had the money to experiment though, unlike a lot of us here.

[agate]

He did--and so did many other people with MS.

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[Earth Mother 2 Angels]

((((((agate))))))

Thank you for sharing this editorial. (A dear friend of mine has undiagnosed, MS-like symptoms.)

Annette Funicello had the CCSVI procedure, and her husband swore that she improved greatly. Her foundation supports CCSVI research. Here's a personal story from a woman, who had the procedure, on Annette's website:

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I wonder why Canada has a high prevalence of MS.

Love & Light,

Rose

[Cherie]

I have been communicating with a man who has had it done 4x now. the first time there was "tremendous improvement" immediately that lasted for almost 2 weeks and suddenly disappeared. It was found that the jugular had fully obstructed. So he had it done again 6 weeks later with stents put into place and the improvement lasted for a week. fully occluded and no evidence that the stent was still in place. 6 months later, he had 4 stents placed into the Jugular and the benefit was noticed for three days before baseline was revisited. He waited for over a year and recently had a vein taken from his leg and placed in his neck (similar to bypass surgery). That has not helped at all and he is worse than when all this began almost 2 years ago...and much less cash fluid. All he wanted was to be able to dance with his daughter at her wedding. He was totally wheel chair bound then whereas when he started all of this, he was getting around with a walker.

Yet...at the Consortium of MS Centers conference late in the Spring, I went to a class on this and the presenter said there was a small component of PWMS who truly did have CCSVI and they were looking for better procedures to keep veins open than using arterial stents. He did seem to think that for some, this might be a way to improve their level of function.

[SalpalSally]

I think it's a dirty shame when they promote these kinds of therapies, as if they were
cures.Does anyone know of one person with MS, who has benefitted permanently from
this procedure? I haven't even heard an update on the Doctor's, who invented this
procedure for MS, wife lately. Has anyone?

[agate]

I can't find anything recent about Dr. Paolo Zamboni's wife Elena. She must be over 60 years old now. As of a few years ago she was said to be doing beautifully as a result of the CCSVI procedure.

I have seen some posts by people who claim to have benefited from it though I can't point to any off the top of my head. It would be interesting to know how they've been doing, over a longer period of time than right afterwards.

[Parsi]

In the story that Rose mentions above, the lady mentions a Facebook page (Only registered and activated users can see links., Click Here To Register...). I looked at it briefly. Some of the posts are mentioning studies. I wonder how objective those are after reading agate's and Cherie's posts.

[agate]

Parsi, in general, I wouldn't trust a Facebook page for medical information. Facebook entries are too easily changed and they tend to be made hastily, without much fact-checking.

On the Facebook page you mentioned, I see that Dr. Zamboni's photo is prominently featured at the top of the page, with a slightly grayed-out National MS Society logo clearly visible in the background.

This comes close to suggesting an endorsement of Dr. Zamboni and his CCSVI procedure by the MS Society, it seems to me. There is no such endorsement as I understand it.

The CCSVI procedure has a loyal group of enthusiasts, and they have been diligently praising this procedure for some years now. In fact, there is a doctor on an MS board who has devoted an amazing amount of time and energy to posting about it there. It is the board that is often mentioned in connection with CCSVI.

The CCSVI procedure may be helpful for at least some MS patients, but this kind of over-promotion doesn't boost my confidence in it.

[Parsi]

Agate, I wouldn't trust a FB page either. But it is a place that new news might be posted and then could be researched. Too bad sites (or all kinds) didn't carry a "Buyer beware" type of message.