Welcome, Dr. Gross. This is a good point, and one that needs further testing for confirmation. What is a "normal" venous system?...there is much variability. After seeing my husband's 95% occluded jugulars on MRV, Dr. Dake's comment was that he had no idea how this might affect my husband's MS, but that this level of occlusion was "not good for his brain." We looked to all of the research linking slowed perfusion and transit time, as well as hypoxic like lesions (Lassen) in the MS brain. In my husband's case, a week at high altitude had caused his first MS flare, he suffered from sleep apnea and fatigue...it was easy to link his puzzle pieces to diffuse cerebral hypoxia (which also can result in demylinating lesions). Since his stenting, he no longer has fatigue or sleep apnea. He awakes refreshed and ready to go. This is his story...but will not be the same for all. Each MS patient will have their own tale.karlgross wrote:
Dear NHE:
Your points are well-taken - maybe short-term venous flow impediments and alterations are tolerated well, whereas long-term they are not - an open question.
And are we really sure yet that the various odd things found in the venous systems of MS patients are generally NOT found in so-called "normal" people? Especially with the venous system, there is generally a much larger individual variability and maybe there is a rather wide spectrum of what is, or should be, considered as "normal"...
I'm NOT denying Dr. Zamboni's (or others') findings; I'm just saying there are many potential ways of jumping to conclusions.
We are asking that MS patients be allowed to be tested. That is it. A simple way to examine Zamboni's research. Then the MS patient and their vascular doctors can discuss the options for treatment...either repair, medication, postural changes, lifestyle changes, monitoring their condition, etc. A simple request, but one that is being blocked. My question to the medical establishment is why the reticence to test for venous insufficiency? As you have mentioned, we have seen cysts, inverted valves, congenital malformations and a variety of venous issues in MSers. Each MS patient has their own particular brand of venous occlusion. We know that venous occlusion and insufficiency is deleterious to the organ it drains. Why can we not look at the jugulars and azygos? Who owns this real estate? I believe it is a patient's right to be tested for venous occlusion...regardless of an MS diagnosis. And that is what I recommend and will continue to request for all MS patients.One does not need "irrefutable" proof of correctness (that would be an unrealistically high standard - actually applicable only in mathematics and formal logic, I think!).
But given the nature of the proposed treatment, one needs to be "reasonably" sure that this is truly effective before telling the approximately 2-3 million people on this planet who have MS that they should have (multiple) venous angioplasties! At this point, we need good studies with a rigorous and well-designed protocol - this hypothesis of Dr. Zamboni is very "testable".
I was fortunate to find an open minded vascular doctor at Stanford, and to speak with many open minded doctors at the Bologna conference. Another one of neurologist Dr. Eliot Frohman's wonderful contributions was a comment that we need to re-examine all autoimmune diseases in light of Dr. Zamboni's discovery. He posited that the immune system was perhaps just doing its job in AI disease, following the blood, reacting to venous injury. I found his comments to be brilliant and compelling. But most doctors are afraid to view disease outside of their well-defined boxes. Thank you for taking a step outside to discuss this with all of us-
cheer
