Wednesday, 16 December 2009

CCSVI - Fact or Fiction

Taken from the CCSVI Facebook group published on the 14th December:

There are many, many factual errors being published in the press and bandied about by MS societies, doctors and even on well-intentioned petitions. It's important to separate fact from fiction. Here are a few things that are essential to understand-

FICTION 1- "The Liberation Procedure is a cure for MS and MS is not autoimmune"-

FACT-Dr. Zamboni has never used the word "cure." MS is an ongoing assault on brain tissue due to reflux, and some of the damage done to the brain may be permanent. Just as people have variable recoveries due to stroke, recovery from venous congestion and reflux will vary. Dr. Zamboni has never said MS is "not autoimmune." Dr. Zamboni believes that CCSVI may be the cause of the MS process. He says that the immune system is obviously involved...but he believes the immune reaction is secondary to the venous congestion.

FICTION 2- "Venous procedures are dangerous. Several people have died from the Liberation procedure!"

FACT- The only complications from the Liberation procedure (venous angioplasty and ballooning) have been headache and bleeding from the small incision at the groin.

There have been complications from venous stenting, including nerve damage (several cases) and stent migration (one case), but NO ONE has died from this procedure. A friend of many of us had a hemorrhagic stroke after having a stent procedure, but her death was not related to the venous happened on the arterial side. Her family, her doctors and the hospital that treated her after the stroke maintain that her tragic death was not due to her stent intervention.

FICTION 3- "Venous congestion is caused by MS"

FACT- We know how venous congestion works, because it happens in other parts of the body. Chronic venous insufficiency in the legs begins with venous stenosis and reflux, leading to pain, swelling, and venous ulcers. Chronic venous congestion of the liver (Budd Chiari disease) begins as venous stenosis and leads to liver damage. When veins are blocked and blood cannot return to the heart, damage to the surrounding tissue occurs, not the other way around.

FICTION 4- "Dr. Zamboni's studies are not scientific. They are not "blinded."

FACT- Dr. Zamboni's first study was blinded. He tested hundreds of normal controls, other neurological diseases, and MS patients, and the doppler technicians did not know who was whom. After the patient results were "unblinded"- Dr. Zamboni found CCSVI only in MS patients. Dr. Zamboni only gave the Liberation procedure to 65 MS patients....because THEY WERE THE ONLY ONES WITH VENOUS STENOSIS. Why give normal controls a procedure they do not need? Why "pretend" to give people with malformed and closed veins a procedure that they do need. The placebo argument makes no sense....MS patients stayed relapse and progression free (as verified on MRI) as long as their veins remained open and unstenosied. Remaining relapse and progression free is not placebo affect.