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 ozarkcanoer » Sun Apr 25, 2010 5:13 pm

About the brain being a delicate organ : I took a neuroscience class at Washington University in St Louis in the autumn of 2008. It was taught by two researcher in neurology. One of them is on the board of the Hope Center for Neurological Research at Washington University in St Louis at the school of medicine, and has been in the neuroscience business for 50 years. Although my memory often fails me these days, I do remember the first day of class quite vividly. The professor held up a baggie of brain matter. It looked soft and slimy with no discernible structure. Then he said :

"If you open up the skull and observe the brain you could take your finger and stir it up just like putting your finger in and stirring a bowl of custard". That was an odd thought since all my previous experience had been with "prepared" brains. I guess if I was in the butcher business I would have known. The brain is indeed delicate !! I try to imagine the tiny veins infiltrating the brain and wonder about the kinds of forces and molecular biology mechanics at work and what could possibly be going wrong in MS. The brain is indeed a delicate organ. Could the relatively gentle reflux from the large veins create the kind on environment for BBB breakdown with ensuing inflammation ? The fundamental answers are not known.

User avatar
Family Elder
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri


Postby bluesky63 » Sun Apr 25, 2010 5:13 pm

An accessory pathway is not always treated; it depends on the severity of symptoms and the cardiologist's assessment of the individual's risk factors.

Here's a link that explains it a bit better. If you read through there's info about how they assess risk factors.

http://en.wikipedia.org/wiki/Wolff-Park ... e_syndrome

For CCSVI . . . I had a great appointment with a local IR at our teaching hospital, who said that in his experience, venous malformations in and of themselves are a recognized abnormality that may or may not cause symptoms, and that his staff would proceed with treatment if an individual showed symptoms that directly related to venous obstruction (cognitive problems, headaches, visual problems, etc.). This predates CCSVI.

However -- here is the huge frustration -- there is suddenly a major reluctance to treat *anyone* with a demonstrated venous obstruction who also has MS, even if they previously would have, because of all the new controversy. I think they feel like there is suddenly extra scrutiny. This is why I feel Dr. Brandes is correct in saying "remove MS from the equation."
User avatar
Family Elder
Posts: 441
Joined: Mon Apr 18, 2005 3:00 pm

Postby cheerleader » Sun Apr 25, 2010 5:14 pm

This will be long, but I hope it will explain a bit more about why Dr. Brandes is saying what he is at this time.

In his essay, Dr. Brandes likens CCSVI to what he has seen in congestive heart failure. Here's what happens in congestive heart failure-

As the heart's pumping action is lost, blood may back up in other areas of the body, producing congestion in the lungs, the liver, the gastrointestinal tract, and the arms and legs. As a result, there is a lack of oxygen and nutrition to organs, which damages them and reduces their ability to work properly.

Congestion- is an abnormal accumulation of blood that occurs due to stenosis of veins, thrombosis of veins, or failure of an organ to drain properly. It creates a lack of oxygen.

Let's work with that word, "congestion" We know about venous congestion in other parts of the body:

Venous congestion occurs-
In the liver, is called Budd Chiari--caused by an occlusion or stenosis of the hepatic veins
In the spleen- is called Chagas' Disease
In the heart is called Pulminary Venous Congestion
All over the body is called Systemic Venous Congestion

What about the brain? What do we know about venous congestion in the brain?

We know about intracranial (meaning inside the brain) venous congestion which can happen due to dural arteriovenous malformations. This means the veins inside the brain become blocked, and edema, bleeding and brain damage can occur.
Neuroradiologists know all about venous congestion due to venous blockage inside the brain.

But what about extracranial venous outflow creating congestion? Believe it, or not...this area of the body has not been studied with as much focus as other parts. Why? Dr. Dake explained it to me and Jeff this way:
The neuroradiologists look inside the brain, the cardio-thoracic radiologists look at the heart and chest. No one has studied the neck.

So, extracranial venous outflow has been neglected. It has been studied in relation to intracranial hypertension:
Here's a study from 2005-

To our knowledge, the extracranial venous drainage was not systematically evaluated in these patients. This study compared extracranial cerebral venous outflow in eight IIH patients and eight control subjects using magnetic resonance (MR) Venography and flow measurements. In addition, the study identified extracranial factors that affect cerebral venous drainage.
In six of the IIH patients, either complete or partial functional obstruction of the internal jugular veins (IJVs) coupled with increased venous outflow through secondary venous channels was documented. On average, a four-fold increase in mean venous flow rate through the epidural and/or vertebral veins was measured in IIH patients compared with the healthy subjects.

In Bologna, Dr. Eliot Frohman discussed how normal pressure hydrocephalus reminded him of what Dr. Zamboni was seeing in CCSVI, and indeed, we know from new studies that the CSF levels in MS brains are affected.

Here is a study of intracranial venous congestion caused by an arteriovenous shunt-

BACKGROUND: Intracranial venous congestion is often caused by local venous thrombosis or brain arteriovenous fistulas. Hemodialysis shunts are known to cause venous enlargement in the arm or chest but have not been related to intracranial vascular pathology. Case Description- A 59-year-old woman who presented with increasing headache, gait instability, and memory loss was a renal transplant recipient who still carried a left upper arm shunt. Cranial CT scan showed enlarged veins in the posterior fossa with incipient hydrocephalus. Extracranial duplex sonography revealed reversed flow in the left internal jugular vein, which normalized on cuff inflation around the shunt-carrying arm. The reversed flow, intracranial venous congestion, and neurological status improved after surgical shunt ligation. CONCLUSIONS: To our knowledge, this is the first case description of an intracranial venous outflow obstruction caused by a peripheral arteriovenous shunt.

We see this extracranial venous congestion occur in hemodialysis patients:

We describe a 58-year-old woman who presented with bilateral ophthalmoplegia, exophthalmos, and headache and was found to have retrograde internal jugular vein flow secondary to a high-grade obstruction of the ipsilateral brachiocephalic vein from a previous hemodialysis catheter placement. The patient had also a high-flow dialysis graft in the ipsilateral arm. The cranial and extracranial venous system congestion resolved, and the signs disappeared soon after a balloon angioplasty and stent placement at the level of the obstruction.

http://linkinghub.elsevier.com/retrieve ... 8699704348

And now Dr. Zamboni, Dr. Zivdinov, Dr. Dake, Dr. Haacke, Dr. Sclafani, Dr. Sinan, Dr. Mehta, and many others around the world are finding a specific type of venous congestion caused by the extracranial blockage of the jugular veins. Venous congestion has long been associated with MS- since 1863 when Rindfleisch studied the blood engorged veins inside every MS lesion-- but the cause of this condition has not been understood.

When veins are blocked, they damage the organ they drain. This is why your insurance will cover opening up your veins if they are occluded over 50%--anywhere in your body. If your jugular vein had a clot, it would be anticoagulated and insurance would pay.

This is what Dr. Brandes is talking about. Venous congestion as it relates to congestive heart failure. Congestion is the key word...I hope this breakdown helps some understand the concept.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
User avatar
Family Elder
Posts: 5358
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby 1eye » Sun Apr 25, 2010 7:49 pm

This will be long, but I hope it will explain a bit more about why Dr. Brandes is saying what he is at this time.

Good explanation. I am guessing you are impatient with people like me who think they know more than researchers, doctors and neurologists. I don't.

In fact I agree that MS is beside the point about treating venous congestion. I sure am counting on *mine* getting treated.

Right now there is a doctor who is refusing to treat the jugular stenosis because it can be removed (however temporarily) by the Valsalva maneuver. This is the kind of foolish resistance we are getting from the whole medical community.

Right now people are less interested in reflux, and I don't blame them. I also would like my veins dilated, reflux or no. Or even stented, which sure beats the Valsalva, and IMHO has a better chance at overpowering reflux. I don't agree that reflux is ever innocuous, in the normally low-pressure brain-drain game. It is the cause I think of some of what we are blaming on stenosis, of slow outflow.

I have done the required reading, and I think the Association, and the Link, have been proven. Just not by us in Canada or the US. Big deal. I am not so xenophobic that I claim Dr. Zamboni and the rest are only in it for the money, or that their results are not trustworthy because they are not Americans or Canadians.

A study has been done in Italy, and its results have been reproduced and published, by Polish physicians. Plus there are all the walking, talking, better MS sufferers. Like Ginger. Or Mr. Cheerleader. Anyone suffering because they think they need more is a fool. I sure don't.
User avatar
Family Elder
Posts: 3719
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Postby Pepe » Mon Apr 26, 2010 2:05 am

cheerleader wrote:
patientx wrote:Who is denying them? Anyone can make an appointment with an IR or vascular doctor.

Really? Do tell, patient. How does "anyone" do that...because there are thousands of Canadians and Brits and French and Irish and Greeks and Italians and Spaniards and MS patients around the globe who would love to be able to see an IR, but cannot get a referral. That's the problem in Canada that Dr. Brandes is addressing.

María was Dx RRMS 1996. SPMS since 2003; Dx CCSVI by Dr. Simka on Dec.-2009; Balloon angioplasty on Jan.-2010 in Katowice (Poland); Betaseron (2000-2009); Tysabri since June 2009. BBD since 2003. IBT since Jan.-2010.
User avatar
Family Elder
Posts: 141
Joined: Sat Oct 17, 2009 3:00 pm

Dr Brandes link

Postby belsadie » Mon Apr 26, 2010 5:17 am

Good day to all,
I''ve been reading the bantering about the need for clinical trials for CCSVI. My Lord! Let's adopt the mantra,"Live and let live." The information about this condition is readily available for all to read. Just Google CCSVI. People's opinions should be encouraged [It means they're seriously thinking about this] and respected. When categorizing someone, labels should not be used. Give the facts and let all decide for themselves. If you inform [well] they will conform,
Now, about the reference to heart failure...Having been at the bedside of many patients who are in Congestive Heart Failure, it is miraculous how the symptoms are so completely reversed. And all because of the return to proper oxygenation of the systems.........I don't know for sure, but I assume that there were no Clinical Trials for the use of the combination of meds used during the resolution of CHF. Some smart clinician put two and two together and tried this intervention and VOILA, It worked. So, now its standard practice. Clinical TRIALS...I don't think so. Practitioners are always coming up with treatments that are used and are found to be successful treatments. That's why I'm confused. Why, with so much evidence of the need for intervention in venous problems AND treatments already in place is there all this reluctance on the part of MD's [forget the Neuros, most of them are a hopeless cause] to treat this obvious [and dangerous] condition.?????? We're talking about a problem whose collateral damage is negative impacts on the BRAIN. Have they lost their Anatomy & Physiology books?
Stop connecting it with MS. Then put it in the realm of the vascular surgeons who, by the very nature of the beast, love to cut and fix problems. Take it away from the Neuros. They've gotten comfortable with saying, "Well, I don't know for sure, but,,," or I love this one,"It doesn't work for your type of MS, but stay on it anyway," WHAT IS THAT ALL ABOUT?
If the client has an objective, measurable, FIXABLE condition is it not ethically and legally the responsible thing to do-to intervene and fix it?
Hippocrates is rolling over in his grave. DO NO HARM...HAH. I think they misinterpreted this command as DO NOTHING..the Neuros, I mean.
Let's stop the nonsense, remove the ridiculous road blocks and allow clients, with or without MS, to be tested and treated to resolve this dangerous condition.
User avatar
Family Elder
Posts: 106
Joined: Sun Mar 28, 2010 3:00 pm


Postby 1eye » Mon Apr 26, 2010 7:44 am



User avatar
Family Elder
Posts: 3719
Joined: Wed Mar 17, 2010 4:00 pm
Location: Kanata, Ontario, Canada

Postby Brainteaser » Mon Apr 26, 2010 4:08 pm

belsadie - I like your style!
but far too rational for some of the pseudo intellectuals we have around here.
User avatar
Family Elder
Posts: 458
Joined: Fri Jan 14, 2005 4:00 pm
Location: Melbourne, Australia

Postby Someday » Mon Apr 26, 2010 5:40 pm

AMEN to Cheerleader, 1eye, Belsadie, Pepe...

To Lyon, I am also shy and I am NEVER, ever vicious as I have been in my own grotesque posts here.

It's not an excuse, but I can only offer finding myself having to fight for testing and a treatment that can help relieve some of my symptoms is making me vicious.

If I didn't address some of your specific points, remember you didn't address mine either. Re: I just couldn't for the life of me understand why you would attack a physician and tear down his assertions on this site, rather than post your questions/arguments directly to him and give him the opportunity to respond? It just seemed pointless and self-serving. Anyway, I will not be-labour the point any further.

I do agree that more studies, and clinical trials are needed, but I just want them running parallel to testing and treatment for those of us who cannot afford to wait years and years.

BTW, I heard a wonderful, unbiased neurologist speak on Sunday. In relation to naysayers' reaction, he said: "If it's too early to be positive, it's also too early to be negative."

I'm just so scared that by the time those in charge finally give the OK, it will be too late for many of us.
User avatar
Getting to Know You...
Posts: 21
Joined: Tue Mar 30, 2010 3:00 pm

Postby Johnnymac » Mon Apr 26, 2010 6:27 pm

What's lost in all the science are the patient rights. The patient should be able to get tested, if insurance doesn't want to pay until studies are completed...whatever, but Dr's should be able to move forward with diagnostics and treatment of CCSVI and the patients should have the right to an informed decision of their specific risks/rewards.

I have proof of my wife's narrowed veins, why do we have to jump through hoops of fire and wait 6-12 months if not longer to get treated? Do the people who are screaming WAIT and telling good people like Dr Dake to stop treating think they are actually protecting MS patients?

The mound of evidence is too large to ignore, and the current treatments too poor to hold-course for science to run its due-process.

The greatest thinkers of all time didn't wait for people to agree with them before they spoke.
User avatar
Family Elder
Posts: 213
Joined: Wed Oct 18, 2006 3:00 pm

Postby Someday » Mon Apr 26, 2010 6:27 pm

BTW, Hamilton, Ontario's Dr. Rick Paulseth was the wonderful, unbiased neurologist who said, in relation to naysayers' reaction: "If it's too early to be positive, it's also too early to be negative."
User avatar
Getting to Know You...
Posts: 21
Joined: Tue Mar 30, 2010 3:00 pm


Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)


  • Related topics
    Last post

Who is online

Users browsing this forum: No registered users

Contact us | Terms of Service