Monday, March 1, 2010

CCSVI

Chronic cerebrospinal venous insufficiency. Beautiful sounding, isn't it? It is music to MY ears!


I will try not to go into excruciating details, but here it is in a nutshell: A vascular surgeon in Italy named Paolo Zamboni's wife was diagnosed with MS. He set out to learn everything he could about this disease. He discovered a rich and long history of research that links MS to some sort of vascular problems in the veins that drain blood from the brain. It has been difficult to study these theories up until recently because we lacked the diagnostic tools to see inside people's internal jugular and azygous veins without them being dead first.

Zamboni used Doppler ultrasound on real live people to see that 90-100% of clinically diagnosed MSers had at least two stenoses (narrowing) or malformations of the internal jugulars and/or azygous veins that drain blood from the brain. The deoxygenated blood pools in the brain and toxic iron forms. That's baaaaad.

He then decided to have his team (ironically, he has a neurological condition himself that prevents him from being able to use his hands effectively) use balloon angioplasty to open the veins and restore normal flow out of the brain. He called it the Liberation Treatment. It has only been three years, but in that time none of his patients have had disease progression, and many have had mild to significant improvements in their symptoms.

Watch him here: The Liberation Treatment: A whole new approach to MS

Here is a great summary of the evolution of CCSVI from Ashton Embry of Direct-MS: CCSVI and Multiple Sclerosis: Integrating New Data to help guide actions

Another excellent site: ms-mri.com

A smart and tenacious woman in California named Joan Beal found out about Zamboni's work and set out to find a doc in the US to treat her husband who has MS. She was able to convince Dr. Michael Dake at Stanford University to treat him. Dr. Dake then went on to Liberate about 50 more people. The difference is that he used stents to hold open the veins. Dr. Zamboni had to reballoon about 47% of his patients because they restenosed.

Another doctor, Marian Simka, in Poland is also doing a large number of these procedure. Now I am seeing reports of a doctor in Germany, India, and our own NY are getting into the act.  THE place to follow all things CCSVI is a forum you can access here

The University of Buffalo is studying the testing protocol for CCSVI. Their initial report on the first 500 subjects is here: Buffalo study. The full report wil be out in April.

And now my very own Georgetown has decided to get into the act! I am so proud that my neurologist, Dr. Carlo Tornatore, is so brilliant to see just how exciting this is for his MS patients. He is working with the Vascular department to make it all happen.

Which leads me to my next post...

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