Venous Insufficiency in Multiple Sclerosis | Hacker News Reader

Venous Insufficiency in Multiple Sclerosis

sciencebasedmedicine.org

24 pointstokenadult6 comments

A friend of mine suffers from MS about 20 years and currently is in the later stages of the disease. She heard about this last year, she was indeed diagnosed with a venous insufficiency, and actually had the "liberation procedure" done by dr. Zamboni himself. She hasn't seen a single improvement since the operation (5 months ago).

Just to provide an anecdotal counterpoint... Ceci Ervin gave a presentation at Ignite Boulder about her experience with the treatment, and her subsequent improvements:

http://www.youtube.com/watch?v=IaTL_z2IakQ

It's hard to imagine that her progress could be purely psychosomatic, but the procedure is also obviously not a cure-all. We understand so very little about the human body.

My girlfriend's mother has MS and has been paralyzed from the neck down for the last ~3 years (attack happened practically over night). There was some talks from local MS support organization of possible visit from their clinic from Italy (we're in Croatia, so it's very close) to here for some patients. I have heard nothing concrete from doctors on this though, they have been on a seminar about this and there is no concrete opinion from anyone yet.

It's really unfortunate that this hypothesis has become publicized and hyped. It's important that science be able to progress, and sometimes progress involves significant backpedaling.

In this case, we have a slight epidemiologic association:

P(VI|MS)>0 The probability of venous insufficiency given that you have MS is nonzero.

But we're left without most of the remainder of Bayes' formula - at least to my recollection. Therefore, I can't even comment on the strength of this epidemiological association.

This is ignoring the other more critical concerns that could be resolved by prospective cohort analyses. Randomized clinical trials with sham as a control could also be done, if you were pretty convinced that VI were really causing MS.

I'd like to see more data, to be sure - but I really would have liked more data before people submitted to remarkably invasive procedures such as this.

Submitted as a follow-up to a link pg posted a while ago.

Thank you for posting this. The whole MS/CCSVI controversy has really enraged me.

Whether or not there turns out to be some benefit for some percentage of MS sufferers, the hype, conspiracy theories, and two-bit clinics all over the place offering this procedure have done real harm. People have stopped taking medicine that has been proven clinically to help, in order to have unproven surgery.

It's easy to see why. None of the current medications cure the disease, or even stop its progression. They only slow down its progress. And they all have unpleasant side effects, and require injection (though an oral drug is becoming available soon). And even though five or ten thousand dollars (the surgery cost, when I looked it up awhile ago) may seem like a lot, the drugs seem to all cost (very) roughly twenty-five thousand dollars per year.

But that just means that there's a ready population of desperate people to exploit.

And that makes me angry.

Reply on news.ycombinator.com