Thanks for posting those up-to-date and thought-provoking links.
As this and more evidence comes in, it increasingly answers questions not just about whether patients should undergo the surgery, but also whether more research dollars should be funneled into studying it, and whether taxpayers should fund the surgeries.
Thanks so much for the update, Uzi. I’ve been following your wife’s story with a lot of interest - it’s great to see a news story come to life with someone you “know.”
Please tell your wife how much we’re all pulling for her. 
A drug set to ‘transform’ the treatment of MS. Once used to treat sofas to prevent mold until people started to complain about rashes and blisters. Now in pill form (to capture the needle adverse market)! About the only thing it will likely transform is the bottom line of the pharma industry.
I like this at the end of the article:
“It is not quite clear how Tecfidera works. It is thought that one way is to activate a pathway known as Nrf2, which helps protect the body from oxidative stress.”
You don’t know?!
So, one day someone thought up the idea of getting MS patients to take a mold preventative in the hope, I guess, that it would ‘preserve’ their health. Wow. That pretty much sounds like homeopathy to me.
“It is not quite clear how Tecfidera works”… What scientific process was used to authorize this study? Questions like, “What do you think this will do?” and, “Why do you think it will do it” immediately spring to mind as something that should have been answered before research began. And the result should be that is works exactly as our thesis predicted it would, not, “Shit! We don’t know why it is doing this, but it looks good (and it can make us a boat load of money)!”.
I’m all for the scientific method. Maybe this drug (mold killer) will actually help people. But not knowing why something worked is pretty damned sloppy research.
The end of the article states that this substance has been used for several decades to treat other autoimmune inflammatory diseases, so it’s not a huge jump to wonder whether it would be useful in MS.
But it is a stretch that blocked veins aren’t supposed to be that way? What else can cause numbness in fingers and toes? Lack of blood flow. Not much of a stretch really.
And by other autoimmune diseases, you mean one - psoriasis.
That’s the part of this whole controversy I don’t get - aren’t unblocked veins better than blocked veins, regardless of anything else?
Not necessarily. It’s a very complex topic, not amenable to simplification.
Let’s just recognize that every adult has lots of veins (mostly small but sometimes not) that are partially or completely blocked at any given time, without seeming to cause disease or debility. Unblocking them is both invasive and risky. One should consider doing it only if the known benefits outweigh the known risks.
This Mayo Clinic page lists 26 possible causes of numbness, of which only a few plausibly would involve compromised blood flow.
As for using medication whose mechanism of action is incompletely understood, that’s occurred in multiple other settings (one good example is aspirin, whose precise mechanism was unraveled relatively recently).
Neck vein surgery had enough of a plausible (though unproven) mechanism to be the subject of research. Now that the returns of those studies are coming in, there not only is no supporting evidence for the mechanism, but increasingly strong evidence that the treatment is not efficacious (i.e. objective improvements in M.S. are not occurring post-surgery (see Snowcarpet’s links).
I did not know that - I thought our blood vessels were basically clear unless you needed bypass surgery or something. Ignorance fought!
It doesn’t work. Granted it’s a small study, but the only effects that were seen with this type of therapy were negative.
Believe what you want. My wife continues to not have ‘MS’ symptoms that were present prior to her surgery. If she continues not having MS symptoms, I will be quite happy and you can choose to believe that some miracle, which coincidentally occurred at the same time of the surgery, but not related to the surgery itself, was the cause.
I also guess the re-flux where the blood in her jugular vein was going back into her brain was also just my imagination and its disappearance after the stent was in place had no bearing on anything. Apparently veins can be blocked or even better, act like arteries, with no problem. (Ssshhhh, don’t mention May-Thurners) It defies any sort of knowledge I have for how plumbing systems should work, but apparently plumbing works in ‘mysterious’ ways in the body where everything can have an input without an output.
But it doesn’t matter because we all know what causes MS…Well, we actually don’t know what causes MS, but what we do know for sure is that it doesn’t have anything to do with veins because that would just be crazy.
I think I forgot to mention an interesting item when I wrote about Tecfidera. Anticipated costs for this drug $51,000.00 USD/year. Lots of incentive for the MS industry to find a fix with an operation that costs about $5-10K.:rolleyes:
Cynicism aside: My personal opinion is that at the end of the day we will find that MS might have a number of differing causes or contributing factors. One of which is CCSVI. It might be the trigger for a subset of people that this surgery can help with. Will it help with everyone? Obviously it won’t because it hasn’t. Or, what may be found is that the jugular isn’t the only place where blockages occur and by treating them symptoms can be alleviated.
“Liberation Treatment” is just one of the latest massively hyped “cures” for M.S.
For perspective - the International Federation of Multiple Sclerosis Societies’ Therapeutic Claims Committee has published a book on more than 100 alleged cures for MS, which it revises every few years. Of the dizzying array of suggested treatments (hyperbaric oxygen therapy, thymectomy, DMSO and many many more treatments, drugs and supplements), none has been shown to alter the course of the disease, despite individual testimonials and anecdotes. One could claim that Big Pharma is suppressing all of these therapies, but it’s not a convincing argument.
So what do patients have to lose by trying any or all of these “cures”? Some, like surgery are not cheap and carry the risk of serious side effects and death. All offer false hope, waste valuable time or can even worsen the condition. From fiveyearlurker’s link:
*"In a few cases, brain lesions associated with the disease actually seemed to worsen after (“liberation treatment”).
Dr. Adnan Siddiqui, who led the study, said the increased lesions were a sign of potential harm from the treatment. He said the results surprised even the researchers because they thought there might be some benefit. He emphasized that the study was small and needed to be verified by more research.
But based on the findings, he said, the balloon treatment should not be used except in studies that are carefully designed to find out whether there are any patients who might be helped by it."*
MS is a disease with common remissions and relapses. No miracle or unnecessary surgery is required.
Maybe not a miracle, but spontaneous remission, which happens with diseases like MS and cancer.
There used to be a website called www.multiplesclerosissucks.com. Evidently he has relocated to http://multiplesclerosissucks.me/ , and a lot of his original essays/articles haven’t been reposted yet. Hopefully they will be soon, because one of them was a simple simulation that demonstrated the difficulty of determining whether any given treatment for MS is effective, given that fact that MS can undergo spontaneous remission at any time. If you only have a dozen MS sufferers in your experiment group, and another dozen in your control group, then the “noise” introduced by random spontaneous remission can completely obscure any effect that the treatment being tested may or may not have. The only way to get around such a noisy disease is to have very large study groups, which becomes correspondingly expensive.
51K per year for something that has proven to work in double blinded placebo controlled studies vs. something that has proven not to work in similar studies seems like a no brainer to me.
What is the “MS industry”? Pharmaceutical companies will make money selling drugs. Surgeons and hospitals will make money from surgeries, and none from outpatient medications. Insurance companies will make money if they can pay for a $10K surgery which renders a $50K drug unnecessary.
Kind of like a study of only 20 patients referred to previously?
The ‘MS Industry’ including the neurologist that my wife was going to prior to the surgery that refused to see her after she came back. The same one that also refused to listen to her when she said she was getting worse and kept writing down she was the same as part of a long term Copaxone trial. That industry.
25 years ago when I was in university I wrote a paper on fraud in science. $51000 are 51000 reasons that I remain skeptical. And given my wife’s and my experiences nothing is happening to assuage me of skepticism. Does that mean I don’t take advantage of drugs from the pharmaceutical companies or wouldn’t take Tecfidera if that was my only option? Not at all.
There are doctors who have done research on this therapy (including the pioneer of it: Dr. Zamboni) and then there are doctors who perform the procedure. Many more of the latter than the former, and it seems to me that the Dr. V Balaji mentioned by truthSeeker2 is just a doctor who performs the procedure so one wouldn’t really expect to find published papers by him any more than you’d expect your dentist to have published a study on gingivitis.
I think this is true. The great hope that CCSVI was originally met with has been fading as more research is completed.
However, it’s not helpful to imply CCSVI is quackery or compare it to homeopathy. Because there’s quackery, and then there’s medical research that just didn’t pan out. Very different things.
However I do think that there may be some practitioners of the Liberation Procedure who might be quite willing to accept money from desperate MS patients even past the point in time* that CCSVI could be considered viable.
*I followed the whole CCSVI thing quite closely for a while but not lately, so I don’t know that we have reached the point yet that CCSVI could be said to be completely non-viable.