Monday, November 23, 2009

CCSVI and MS

I'm afraid that a whole lot of people are going to be disappointed. There is absolutely no evidence, even Dr. Zamboni's research, that this procedure works for everyone.

Dr. Zamboni says that it works for people who's narrowing of the veins doesn't come back but what wasn't on the show was that 80% of the people who have had this surgery in California have the narrowing come back. Their symptoms may be less severe, but they're not "cured".

There's also a side effect of neck and shoulder problems for some people that should also be investigated before we start handing out this surgery for everyone and their brother with MS.

There's also no evidence that the procedure does anything to help with damage to the brain or undoing scar tissue. This answer also doesn't solve the mystery of MS's geographic and gender biases, the genetic factors, the connection to Guillain–BarrĂ© or Epstein-Barr, or even gluten, egg or dairy allergies or sensitivities. This very simple answer doesn't even begin to unravel the web of possibilities with MS.

Please, for the love of Pete, don't pin your hopes on this being "THE ANSWER". It is probably more like "one of a few answers".

5 comments:

  1. Where are you getting the "80%" number?

    The people who are treated in California are getting stents, not balloon angioplasties - so the stenoses can NOT come back - at least not in the same place!

    The neck and shoulder problems you mention are limited so far to the earliest stent patients, who receives a larger bore stent than later patients - and even their problems seem to resolve within weeks or months.

    Please, for the love of Pete, don't dash your hopes of this being The Answer!

    :)

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  2. I got the number from the website where the people who have had the procedure in California are posting their progress.

    Only 15 to 20% are posting that they are symptom free or "cured" after 5 months to 2 years. The rest of them have said that their necks are blocked again, or it hasn't worked to undo some of the earliest damage.

    I refuse to set myself up for more disappointment by pinning my hopes for the future on something that doesn't answer all the questions. We don't even know if this CCSVI is the cause of MS or if it's an artifact of MS.

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  3. It's true that no one has had total reversal of all symptoms, but no one really expected such a thing - this would be more "miracle" than "cure" I fear!

    But if we can stop progression, and reverse some of the previously done damages ... I'll take that!

    I hope, I hope, I do!

    PS - none of the people treated in CA have been so for more than a few months at this point - the people treated two years ago were Italian angioplasty patients. Later today we should get the results of the 2 year followup of those patients - and of those treated by stents in CA, none of them regrets the decision - most are amazed at the improvements they have seen, and recommend it highly!

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  4. It’s important to realize that all systems can be linked when we talk about any disease, especially MS. Inflammation of the spine and brain is the manifestation of whatever is causing MS, and so steps to counter inflammation plausibly could be helpful, no matter what is causing that inflammation in the first place. Low-fat diets, lots of antioxidants and elimination of allergens (like dairy, gluten and eggs, three very common allergens) as well as avoiding inflammation from infectious disease like Epstein-Barr, would help overall inflammatory status, and so presumably (and in some cases experimentally) help MS. There’s also a lot of evidence that Vitamin D deficiency can be linked to MS and a host of other diseases, which lends an answer to the “geographic mystery,” since those in higher altitudes have lower levels of Vitamin D as well as higher rates of MS. And as for gender mysteries, there’s a lot we don’t know, but hormonal differences such as progesterone in women and the inability of men to eliminate iron could go a long way towards explaining common patterns of MS progression divergence between men and women. But that doesn’t have to have anything to do with onset or “cause.” I’m not saying that we understand these things entirely or even adequately, but simply that it’s unnecessary to demand that all the questions be answered before we can accept that there is a simple treatment that might work. Of course, it’s smart to be prudent about new findings like this, but as long as you aren’t investing our life savings into CCSVI, a lot of cautious optimism couldn’t hurt anything.

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  5. The theory behind CCSVI is that the twisted/blocked veins in the neck and chest are the *cause* of MS, and that the metal build up in the brain because the blood can't flow out properly causes the immune reaction, which triggers the inflammatory response, which makes *some* people have problems with wheat, dairy and eggs. (I'm not one of them. I've been tested out the wazoo, and I have NO inflammatory response to any of the above.)

    IF CCSVI is *the cause* of MS, then why do women born in northern latitudes have twisted/blocked veins in their necks? How does this explain "viral" onsets of MS?

    It doesn't.

    I'm not saying it won't but it doesn't right now.

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