Dr. Brandes---treat CCSVI now, remove MS from the equation

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby zinamaria » Sat Apr 24, 2010 11:20 am

Excuse me for mentioning this distinction, but 'medicine' is distinct from 'patient'...drugs, the so called 'medicines' undergoing trials everyday?...let us hope so because they are poison to the system and destroy people's basic health all the time, in other words, they can be life threatening, they need to be tested.

human beings, 'patients' are not drugs, nor is angioplasty a life threatening procedure or a 'drug'. it simply opens up obstructed veins so we can, ah, you know, breathe. I'm also having a difficult time gleaning the 'humor'. And it's unfortunate anyone would need to rely on an 'emoticon' to articulate this so-called 'humor', that's why we have language, so we can say exactly what it is we mean, if we so wanted to make that effort.

z
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Postby 1eye » Sat Apr 24, 2010 12:33 pm

I am posting this here because I'd like Dr. Brandes and others to tell me why I am wrong. I don't want arguments that require a medical degree to understand. Just high school, please. But I do want them to be an open-and-shut case.

This may be true for points that I have not researched much, but not for the whole thing.

Let's see, what do I remember?

It's caused by many things, infections, injury, congenital conditions. Its likely in some cases associated with scarring.

It's 4 time more prevalent than MS, so could include MS.

It causes reflux, which could reach the brain.

It is according to http://en.wikipedia.org/wiki/Tricuspid_regurgitation, usually asymptomatic.
See also http://en.wikipedia.org/wiki/Jugular_venous_pressure

I think it causes both CCSVI and MS.

I know that sounds like a mouthful, but I am quite serious. It causes instantaneous pressure increase in the head veins. It starts the cascade of events, which over a period of years will change to MS symptoms. The instantaneous pressure increases, averaged over time, cause the veins to react by stretching and growing colatterals. It is important to remember the two greatest forces at work: the heart muscle, and gravity.

I got this idea from a discussion on Colin Rose's website. But you can forget him. I never did convince him that veins have anything to do with MS.

In the first instance, there doesn't seem much reason for the heart to pump venous blood away from itself. But it is pumped toward the lungs. It is for this reason that the vessel carrying venous blood toward the lungs is actually called an artery. This transfer of blood from heart to lungs is the only outward-pumping force generated by the right side of the heart. It is driven by contractions of the right ventricle. It is normally not enough force to overcome the force of gravity, because that side of the heart is not supposed to pump blood upward. Reuse, yes, recycle, no. The blood that goes up comes from the left atrium.

Please forgive all my repetition of primary material to you. I go on, only because I am new to this area, and don't know it from the same sources as doctors do. All I have is a 'fresh pair of eyes.' So I go on.

The right heart has a different kind of job to do from the left heart. During relaxation, of the left ventricle, newly oxygenated blood must be moved by negative pressure, or suction, only laterally from the lungs by the left heart, from where it is distributed to the body, also by the left heart.

During contraction (squeezing) the heart must be much stronger on the left, having to pump oxygenated blood from the chamber above, to all points served by oxygen, which is everywhere in the body, including the head. Everything below heart level is assisted by gravity. Everything above heart height, conversely, which must go upwards for the brain and senses, must be pumped against gravity, when the person is upright.

On the right, the heart, as I have said, does not need as much contractile, outward, squeezing force as 'relaxing' inward, suction force. It must only contract and pump outward more or less laterally, to the lungs, where blood gets oxygenated by breathing. (It may go, for some non-oxygen-related cleaning, to the liver and gall bladder, but I'll come to that later.) But it must retrieve by suction, all blood that went down as far as the toes. In the upward direction, it (the right heart) need never work against gravity when contracting, because gravity is available to get blood back down to the heart, so it goes down, as appropriate, during the suction, relaxation phase of the heart muscle's movement, from everywhere it has to above heart level.

There is a valve, the tricuspid valve, that prevents pumped-outward blood from being pumped upward toward the right atrium, by closing when there is positive pressure from the lower right chamber (i.e., when it squeezes). If this valve fails, there is said to be a condition called tricuspid insufficiency. Other nouns are regurgitation, and incompetence.

In this condition, blood from the right lower chamber can be, and is, pumped upward, backward through the incompetent valve. So regurgitation can be pumped upward toward the right atrium, the right jugular, even the right brain. These contractile pulses of venous blood cause the total jugular pressure to rise. If the valve fails but the breaches are still small, there may be multiple small streams of reflux, each with some pressure and pulsatility above the neck. When the members supporting the closed valve give way altogether, the valve becomes stuck open.

After some years of the added venous pressure (averaged out over the reflux pulses), the veins of the head balloon to a larger shape -- the body's response to the additional pressure. The newly formed veins do not always lead anywhere, and strictures can keep the pressure inside the head, where the veins will expand and add collateral vessels to try to improve the outflow. Sometimes, a stricture in one vein causes it to enlarge above the vertical level of the stricture. This may possibly be the only effect, over time and so no lesions will occur, if the venous reflux never reaches the CNS.

If the reflux reaches the Blood-Brain Barrier or other places in the CNS drained by the refluxing veins, the MS symptoms will occur.

This disease (tricuspid insufficiency) is prevalent in 1% of the population. 50% of the time it is asymptomatic, so we are down to 0.5 percent of people who have symptomatic disease. This is approximately twice the prevalence of MS.

It could be that the additional work the heart has to do during gestation is responsible for the 'pause' in MS sometimes seen during pregnancy. It could be that women,have stronger ventricular contractions in the right heart than men, or weaker tricuspid valves, therefore twice as many get MS. Possibly menstruation is involved. This is definitely an area for further study.

And also right ventricles being too big or powerful after pregnancy, so more reflux happens.

The differences in prevalence at different latitudes may be due to different sleeping schedules. Nocturnal predation is common in equatorial areas. Diurnal predation, and therefore more indoor living, occurs at polar areas. Posture when lying down (asleep) seems to have great bearing on the drainage by veins. At extreme latitudes there is a six-month night, or period of darkness. Humans may have responded to the daylight length differences by hibernating, during which postural changes would be adapted to fairly successfully. There should therefore be a low prevalence of TI (tricuspid incompetence) and therefore in CCSVI and MS in these polar regions. Far fetched as that sounds.

It should be easy to test for CI. A pulsatile liver is considered a positive diagnosis. This statement implies that the liver has reflux from the right heart. This is because the deox blood is pumped to the liver as well as the lungs, for cleaning. The phasing of the reflux should correspond with the right ventricle contractions.
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Postby cheerleader » Sat Apr 24, 2010 1:36 pm

Hey one eye--
tricuspid regurgitation might be part of some MS patients' disease...but this is a pretty recognizable heart condition, since it produces a murmur and EKG issues. Most (if not all) GPs would pick this up and refer to a cardiovascular doctor. My hubby's heart is fab--he's had the heart work up by his GP.

But it's interesting research you put together. I think CCSVI, as found by Dr. Zamboni, is something very specific--involving venous malformations, not heart defects. Hope that stayed on the high school level!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Sat Apr 24, 2010 1:59 pm

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Story time

Postby FlashHack » Sat Apr 24, 2010 2:49 pm

A story for Lyon:

Once there was a man who believed he was dead. His wife thought this was highly inappropriate behavior and so she hired a brilliant young psychiatrist to convince him otherwise. The psychiatrist decided that the best course of action was to educate the man on the fact that dead men do not bleed. To this end the psychiatrist gave the man all manner of books and videos on the topic. He even brought in highly credentialed expert physicians to speak at length regarding the human circulatory system.

Finally, one day as the man was reclining on the doctor's couch he said, "All right doc, you've convinced me. Dead men do not bleed." At that, the doctor leaped from his chair and stabbed the man in the thigh with his pen. As the blood began to flow from his wounded leg, the man could not hide the look of astonishment on his ashen face as he looked the psychiatrist square in the face and said, "My God doc! Dead men DO bleed!"

--------------------------
Lyon, no amount of evidence will convince you my friend. You are a noisy gong and clanging cymbal.
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Postby 1eye » Sat Apr 24, 2010 2:50 pm

Definitely HS level, but not open-and-shut. Since a doctor and a blogger (both unmentionable) asked the question, I have looked for an answer. Please do not discount it so easily. There is no obvious source of force to drive reflux, other than the heart. The thing may be overlooked, and is asymptomatic a lot of the time. If you look on Wikipedia, you will see a lot, but I have been specifically looking for information that would rule it out. I had a heart attack and 3 stents placed, with an echocardiogram to boot. I did not have anyone tell me I had no tricuspid reflux. Since it's asymptomatic, shares symptoms with MS (which is *not* in the jurisdiction of the cardiologists -- mine told me that, not in those words, but that's what he was saying --, they might not tell you, even if you had it, since I was not complaining to *them* about weakness, or other symptoms. You can do a test, though. Your liver being pulsatile is diagnostic. If you ain't got it, you should *not* hear your heartbeat in your liver. And if you know you *do* have reflux, and have not yet been liberated, assume the same position, breathing, etc., as caused it during your Doppler, and have someone check your liver for a pulse.

It could be that the reflux is only strong enough to reach your brain on occasion. If it persists, it will certainly cause the damage we are seeing. It seems to me also that the veins would balloon above the stricture, and there would be more jugular venous pressure above the stricture than below (in the azygous it would be the other way around, if it ia closed at the bottom). The reason for this is that the stricture is letting blood in, but there is (intermittently) not enough gravitational force - in the case of the neck - or suction force (the azygous) to counteract the reflux and let the blood out.

The thing about the heart's pulsations: they may not be audible on the "outside" (above the narrowing in the head, below it in the azygous), or if they are being suppressed by good drainage (after Liberation). On the Doppler, they may not show at all if they are instantaneously strong, but are being smoothed (like by a constricted vein) into a jet, so there are no more peaks and valleys.

Since they are so often asymptomatic, once Liberated, you might improve. If you don't, maybe you still have some bad reflux (stronger than suction plus gravity).

JMHO
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Re: Story time

Postby Lyon » Sat Apr 24, 2010 2:55 pm

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Perry Mason?

Postby FlashHack » Sat Apr 24, 2010 3:25 pm

What I hear you saying is that there is NO evidence for CCSVI? That is just simply not true. If 10 people walked through the front door soaking wet and told you it was raining outside, you wouldn't consider that evidence of the weather!

There are certainly more than ten people ON THIS VERY WEB SITE who rave about the effects of the Liberation Procedure. There are highly trained physicians who attest to it's impact on patients having seen it with there own eyes. There is even now an entire country that has bought into the theory with its cold hard cash.

Your definition of "evidence" does not include anything that supports the CCSVI theory. Just like the man in the story, you have concluded that all supporting reports must have been falsified by some diabolical conspiracy.

This is not Mathematics. There is no way to PROVE anything in medicine or history or law or science. There is merely a preponderance of the evidence. Reasonable doubt. In light of all of the eye-witness testimony, your doubt has become quite unreasonable.

Your constant railing against something you have absolutely no stake in whatsoever is at best a curiosity to me, and at worst a form of neurosis. Perhaps you view it as some sort of game. A sparring match. Maybe you are a frustrated one time speech and debate student longing for the old days. I suppose we will never know.

Once again, you've sucked me into your insanity and I have wasted my time tilting at wind mills.
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Postby Lyon » Sat Apr 24, 2010 3:36 pm

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Postby 1eye » Sat Apr 24, 2010 3:42 pm

I think nay-sayers are not thought of highly here. With good reason, a lot of the time. But if Lyon is just saying, wait for the system to dot it's Is and cross it's Ts and convince even the stupidest and most contrary of public servants, it may be necessary not to wait, as they may be blind to the real cost/benefit ratio. Only thing to do is reduce the cost, as they are intending to in Alberta. By fund-raising. In this, some may have to save their MS Society donations for a while. I think in that, personal decisions are more swayed by Dr. Brandes and CTV than by nay-sayers here anyway.
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Postby Lyon » Sat Apr 24, 2010 3:59 pm

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Postby L » Sat Apr 24, 2010 4:38 pm

Hey Lyon, join us! You will feel so much better for it! The CCSVI camp is so inviting. Besides, it shall be the winning camp and you don't want to be seen to be jumping on the bandwagon too late. Jump on it now, admit that you were wrong all along and it will go unnoticed.

Seriously, I know you have little faith in CCSVI. But I find it so curious that you, without trials involving more than a dozen people, are convinced by High Dose Cyclophosphamide as a treatment for our illness. A protocol, with it's long term cancer risks that is far more dangerous than angioplasty, and more dangerous than stenting (or so it seems at this stage.) And yet, despite it's relative risk, and a comparable profile in terms of peer review, you seem to accept it and deny CCSVI. Why is that? Just curious, sorry to put you on the spot like that.

I myself, as you may have read in previous posts or can guess just from my participation on this forum, am more than willing to make a wager like Pascal did. I have very little to lose. I can see where you find fault with the doctor's logic and perhaps were he talking in terms of something purely theoretical I might agree with you. But, really, there is no time to lose and something this promising, with this amount of anecdotal evidence (not to mention the more solid trial based evidence, Buffalo, Ferrara and now Kuwait) has to be acted on, from compassionate grounds if no other.
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I Like It

Postby FlashHack » Sat Apr 24, 2010 4:53 pm

L:
Good point. A troll could come in handy in a fight. :lol:
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Postby Someday » Sat Apr 24, 2010 5:33 pm

What is the doctor's point with this statement? The fact is, cancer medicines do undergo trials, before they are prescribed. CCSVI treatment has undergone one, poorly designed trial. - PatientX

Too bad they don't have a "laughing hysterically" emoticon because I'm glad you also noticed that. Of the two possible choices, misguided or mistaken I'm not convinced which the doctor's statement's fall under, but the result is the same. - Lyon


Patient X and Lyon,

Thank you for your posts - I am laughing hysterically after noticing that you didn't actually post your questions to the good Doctor himself on the healthblog site. Instead you fill these pages with “pumped up” tripe. Reminds me of braggarts who go on and on and on and on and on and on (much like you have done here) about the big fight they won...only there never was a fight!

Lyon, I have never read such rudeness before, “READ MY LIPS Dr BRANDES”??? How dare you? Never mind, Lyon, it’s clearly the braggart thing. You are obviously king of your one-man kingdom. Sorry, but rudeness begets rudeness.

Let's take cancer out of the equation and bring CCSVI and MS back in just for a moment.

You want more research, more studies, more proof...more science...before CCSVI testing and procedure are allowed?? What about the years of research, studies, so-called proof and science that went into the MS drug treatments which patients have been taking for years (some benefiting, others actually getting worse) which we now know are detrimental to the health of some patients while helpful to others?

Did you hear this already? If not, on March 29th there was an article
about a Stanford study that are ineffective and harmful for one group of MS patients. “A lot of people are taking beta interferons who should not be and it may make them actually worse,’’ Lawrence Steinman, a neurology professor at Stanford, said last week. In coming months, Steinman said, he hopes to show that the two kinds of MS respond differently to other MS drugs, too." That passage was taken from this site...
http://www.boston.com/news/health/artic ... udy_shows/

http://www.rxlist.com/script/main/art.a ... key=114936 ...this site has the following quote:
"Despite their enthusiasm over the new findings, all of the experts consulted for this article caution that the new findings must be validated in large numbers of MS patients. All warn that it's too soon for patients to seek testing or to make treatment decisions on the basis of these preliminary findings."

Do you know what that means, Patient X & Lyon? The neurologists will continue prescribing these drugs to patients, even though they do not know which group each patient falls into, the one that will be helped or the one that will be harmed. They will continue to prescribe these drugs that will devastate one group of patients and make their conditions worse ALTHOUGH more research, more studies, more proof, more science is needed??? What??? They're not going to put drugs on hold until research, studies, proof, evidence, science, blah, blah, blah are all completed and definitive??? Goodness!!

Is science overrated – I’m beginning to think so. Will there ever be enough conclusive science on drugs/CCSVI, etc., etc.? Clearly there was not enough on the MS drug treatments before they started prescribing the drugs, as we now know. Did that stop them from prescribing the drugs? No. Heck, it’s not even stopping them from prescribing these same drugs now.

Do MSers have years to waste waiting on science for a simple procedure with minimal risk (heck, the drugs have more risks and they’re not waiting for science!) when people are improving with the liberation procedure? We shouldn’t have to. It should be approved now. Even then - Patient X and Lyon, you can continue to wait as long as you want to, but those of us who do not wish to wait should be able to access testing and treatment now.

And yes, I do realize that any nut can post messages on this site and claim to have been liberated. Unless there is a verifiable name with a posting here or on any other site, I would not give their liberation accounts much credence. BUT I do take seriously the personal accounts publicly shared about Cheerleader's husband, and by Ginger, Duncan Thornton and the many others who have been liberated and have spoken out, as well as the many, many other documented cases.
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Postby 1eye » Sat Apr 24, 2010 6:20 pm

Well, at least Dr. Rose was helpful in one instance. But after a while I have to cut my losses. It seems like every positive here has a disproportionate amount of negative response, which snowballs.

If I were still a software person, I'm sure I could write a negativity filter that would prevent some of this waste of bandwidth. In the meantime, I just suggest skipping over certain names. It will reduce stress and aid mental health.
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