This Is MS Multiple Sclerosis Knowledge & Support Community

bluesky63 wrote:I have to agree that the term "CCSVI believers" is problematic because it implies that a person has made a faith-based decision instead of a rational conclusion based on research and professional medical advice.

And yes, there are people who go overboard in their acceptance of CCSVI and rationalize every possible issue with it. Yes, there are people who go overboard in their attacks on CCSVI and their refusal to accept any possible merit in the concept.

But the majority of people we can thank and respect here -- and MOST ESPECIALLY the physicians, s well as the pioneers and early adopters, the people who have personally experienced the good and the bad, many of whom are at a crisis point in their disease -- these are the people who are looking for genuine information and research and are not trying to polarize anyone already dealing with a truly miserable disease.

This is no rant...bluesky, I agree with you, well said.

A hallmark of a believer is reluctance to rationally examine information that runs contrary to ones belief. Many of the reactions to critique on this forum bear this hallmark.

"Hallmark". You're such a card.

I have to agree that the term "CCSVI believers" is problematic because it implies that a person has made a faith-based decision instead of a rational conclusion based on research and professional medical advice.

I have to disagree. Belief has either nothing or everything to do with reason or rationality depending upon how you arrive at that belief. As our prime minister has said "A proof is a proof...etc."

The term believers in this instance is a code word for irrational faith-based unreasoned acceptance used on this web site and elsewhere to denigrate those who arrive at belief by either faith or reason.

Coincidentally the "faithless one" (:)) disagrees with the person so termed, however he or she arrived at this opposing belief. It has nothing to do with the aforementioned "hallmarks". Yes, people who do not agree that CCSVI exists or causes MS or whatever, are also believers. They just believe the opposite, and wish to cast aspersions., without using any meaningful language.

1eye, I think you hit it more accurately than I did. "Faith," "belief," and "rational choice" do not have to be mutually exclusive. But you summed up the code-word point nicely.

Bluesky63, coronary angioplasty for chronic coronary atherosclerosis does NOT "work". It does not prolong life, does not prevent heart attacks and doesn't relieve angina symptoms any better than medical treatment. Coronary bypass in the short term relieves symptoms, prevents a few non-fatal heart attacks, but does not prolong life. In my practice I reserve bypass for cases of intractable symptoms, a rare situation, and never advise angioplasty for chronic disease.

Venoplasy is not analogous to arterial angioplasty. Veins are thin-walled, much more prone to tears and do not develop atherosclerosis. It has some rare uses in symptomatic cases of venous blockage due to tumour, fibrosis or thrombosis.

The venous "malformations" which, in an unblinded study, Zamboni found in 100% of MS patients and none in normal subjects are really just variations of normal venous anatomy of the head and neck. At least six well-blinded, controlled studies using doppler and MRI have failed to find any significant difference in head and neck venous anatomy or flow between MS patients and normal subjects. "CCSCI", as a disease, does not exist. No more investigation or trials of "liberation" are necessary. Case closed.

http://medicalmyths.wordpress.com/2011/ ... is-a-hoax/

I would be willing to use a wheelchair, if it helped me to better understand the pathophysiology of MS and its treatment. But if every doctor had to suffer with every disease in order to be licensed to practice there would be no doctors. In fact, doctors suffering with a disease or having loved ones with the disease should avoid treating that disease because their professional judgement is not objective. Zamboni is a classic example.

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I would be willing to use a wheelchair, if it helped me to better understand the pathophysiology of MS and its treatment.

Since fatigue is such a frequent complaint in MS (at least 90% of patients report it), you might also consider taking a powerful sedative every morning. Also, fire ants on the feet. Novacain or some numbing agent in the hands, perhaps? Not just for a day, but for years.

I fear you take our suffering lightly.

In my practice I reserve bypass for cases of intractable symptoms, a rare situation, and never advise angioplasty for chronic disease.

This may be reasonable, but is it the standard that most doctors follow? Or are you somewhat of a stand-out by never advising angioplasty for chronic disease?

Here is an image from my venogram on my left side. My right jugular was blocked as well. Whether that is a variation of normal or pathological, it was successfully opened, and some of my symptoms have been alleviated.

Even complete bilateral blockage of the internal jugular veins does not cause an increase in intracranial pressure and is not associated with MS because of extensive collateral flow via the emissary veins.

http://medicalmyths.wordpress.com/2009/ ... i-surreal/

Which symptoms have been alleviated and how fast? Is there any objective evidence of plaque reduction on MRI coincident with the symptom alleviation?

I can't imagine you guys don't have something better to do than this today...

I do, unfortunately, have plans today, so will have to return to this conversation later. One of the things I value about Dr. Rose -- and this is true of our Lyon as well -- is that we may disagree but we can do so intelligently. Lyon and Dr. Rose both bring some good points to the table, they just wrap them up in so much skepticism and mockery and declamations, it is hard to get to the good stuff.

Quickly....my improvement that can be measured would be my vision improvement. Six days post procedure, I found myself getting headaches and having difficulty with my contacts. Eight days post procedure, I went in to the optometrist. Measured by the autorefractor, my vision had improved. This was confirmed with the "does this look blurrier or does this look blurrier?" test. I had to order new contacts, my right eye has improved from -4.75 to -4.5. I have both optic neuritis and pars plenitis, two eye conditions strongly associated with MS.

My MRIs are exceedingly stable, for which I am grateful, but the expectation at my next MRI given my disease course already would be that there is no change and no new lesions.

I can discuss my anecdotal improvements later, if you are interested. Colors brightened immediately, which was a surreal experience, and the explanation that seems viable may be that it was due to a lifting of hypoxia and related hypoxia-induced color impairment as seen at high altitudes and in certain other disease processes.

As for pressure, we have heard from the beginning from Dr. Sclafani that it is not about pressure, it is about flow. Here is a diagram on flow:

The effects of the low mean shear stress weakens the blood-brain barrier. Pre-CCSVI, this had always been an unanswered question in MS: what weakens the blood-brain barrier in the first place?

We might not have all the answers, but this is worth investigating further. So much money is spent on MS research already, following the slightest of leads. This is a disease people care about. CCSVI has the potential to be a big lead, I am excited to see where it goes.

Changes in refraction over time are universal, have nothing to due with the retina and nothing to do with MS. That "colors brightened immediately" is highly subjective. What was the evidence that you brain blood flow was so reduced as to cause cerebral hypoxia? If blood flow was that reduced you would have lost consciousness long before color perception changed.

With all due respect to Dr Sclafani, the ONLY way venous occlusion can potentially cause brain damage is by an increase in intracranial pressure which could secondarily reduce blood flow. No study has ever shown a primary reduction in cerebral flow causing MS. Cerebral flow will be reduced secondarily in long-standing MS secondary to loss of active brain tissue. Indeed, we do not know what breaks the BBB and leads to infiltration of inflammatory cells, but it has nothing to do with blood flow or pressure.

We all care very much about MS. Unfortunately, "CCSVI" and its surgical treatment, as superficially attractive as it is, is not the answer.

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Cece wrote:

The effects of the low mean shear stress weakens the blood-brain barrier. Pre-CCSVI, this had always been an unanswered question in MS: what weakens the blood-brain barrier in the first place?

That is an interesting question. I believe that at a young age when the thymus is producing naive white blood cells, paired with a horrible diet and low vitamin D, there is a situation where the fat that makes the blood brain barrier (BBB) is brittle and contains many of the precursors of bad-prostaglandins. When the BBB is assaulted by any foreign element, especially a retrovirus like Epstein Barr, it over reacts. (Epstein Barr is incredibly interesting in its effects on the BBB and vasodilation as it travels back and forth across the BBB). This causes a cascade of inflammation which signals white blood cells to arrive. Since these are naive white blood cells, they are still becoming sensitized to foreign elements. Once they pass the BBB to fight off the foreign invader, they tend to stay busy if they cant find any thing else to fight. Well, they are not supposed to be in the CNS and can't get out as easy as they came, so the myelin sheath seems more and more foreign looking and they begin treating it like a virus and going to work. Then they become sensitized to the CNS myelin. Congratulations, ten years down the road you have MS. I guess the best bet is keeping the little buggers out of the CNS.

I think genetic factors in to all of it as well.

Why isn't anyone fighting about the theory above?

That's the way I have come to understand MS. The CCSVI thing was a recent curve ball to my understanding. I wonder if the MS causes venous anomalies, not the other way around. (I have a venous anomaly noted on my MRI as well, but was told it was natural variation - hence interest in CCSVI)

However, more power to all that want to go get the stints. If I was further down the road and looking to try something new after suffering for a long time, I may have volunteered. Not now, though. I am going to do something different and follow the information that can be ascertained from CCSVI research. The whole thing doesn't jive with my understanding.

peace

And take a bunch of anitoxidants!

It's funny that a doctor who likes to spout off about Zamboni and his ilk being in the faith healing trade, has so many of his own patients (on RateMD) thinking that he has a God complex:

 11/25/10 2 1 1 1  This Doctor seem to be uninterested in what a patient thinks or feels about their own condition Dr Rose does seem to have the God complex that so many aging docters seem to develop when they are unable to keep up with current developments in their field

It doesn't seem to me like there is any point reasoning with this guy. He's set in his ways.

 

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