Dear Madeline,Thanks so much for your interest. I've included a few of my favorite tid-bits on this phenomenal finding. There's just soooo much out there. Please let me know if I can help in any way, or possibly participate. Thanks again, Angela Spindler (MSer since 2000)Tears of hope - Rebecca Cooney has secondary progressive MS. She is losing the use of her legs and worries that within a year she will be in a wheelchair. "I was with my family," Cooney recalled of first hearing news about the surgery. "I started to cry because I felt it was finally something tangible that can be fixed."Even if the angioplasty doesn't reverse anything, Cooney's hopeful her decline could stop. So far she's spent $4,000 for tests in the U.S. that showed two severely narrowed internal jugular veins. Her objective is to promote research and testing. She laments the lack of standard protocols and tests to diagnose CCSVI. "Anybody that has MS is perfectly happy to be led down the garden path just for a chance at maybe having a shot at this," said Matthew Katz, a wheelchair MSer. Experts with International Union of Phlebology, which investigates and manages vein disorders, agreed CCSVI is a condition that should be taken care of. Fellow MSer, Pierre Bouvrette said he can't wait for treatment. Bouvrette went to a private clinic in Katowice, Poland, and paid $10,000 for surgery to open up his neck veins. The fee included five days at a hotel. "It is not totally proven, there are some chances to take, but I am willing to take them," said Bouvrette. The Polish clinic is booked well into next year performing five operations a day. CCSVI explained - Chronic cerebrospinal venous insufficiency is a chronic problem in which blood from the brain has difficulty returning to the heart. It is caused by a narrowing or "stenosis" in the veins that drain the brain. Small studies on people with MS suggest the blockages lead to different patterns of blood flow back to the heart. Blood leaves the central nervous system differently than normal. For example, it may flow more slowly, leading to swelling, or may move backwards or "reflux" into the brain causing lesions. Dr. Robert Zivadinov of the neuroimaging analysis centre in Buffalo, N.Y. is trying to confirm the link between blocked veins and MS. In Nov. 2009 he said being born with narrow veins in the neck or thorax, along with environmental and genetic factors such as vitamin D deficiency or exposure to the Epstein Barr virus, may play a role in causing MS. Different tests are used to diagnose CCSVI. Doppler ultrasound of the neck and skull may show if blood is refluxing. Venography, which involves injecting a dye into the veins to watch blood flow and possible stenosis in the azygous vein in the chest and the two internal jugular veins, is also used. Researchers are still investigating the best protocols and tests to use. People doing the tests need to be trained to do it effectively. Treating the condition is more controversial. Zamboni's angioplasty procedure involves a small incision in the groin to insert a catheter into the blocked vein that is opened with a small balloon. In his study, all 65 patients who had the procedure had fewer MS attacks and brain lesions. Hearts of millions of MS sufferers sang when it was announced that the Kuwait Ministry of Health decided to treat all 6,000 of their people suffering from MS with the Liberation Treatment. Dr. Tariq Sinan, an Interventional Radiologist, was instrumental in urging the Health Minister to make that decision. "We have performed the procedure on 12 patients and they all showed improvment. Two can now walk without crutches and are able to drive again," Sinan says. As for procedures, the Kuwaitis will be starting right away. "We will start next week and we will be treating 10 patients a week," Sinan says. A timeline of vascular findings in MS 1863 Dr. E. Rindfleisch noticed in all autopsy specimens of MS brains a vein engorged with blood was at the centre of each lesion. 1937 Dr. T. J. Putnam researched lesions noting thrombosis of small veins could be the underlying mechanism of plaque formation - evidence of vascular occlusion in MS. 1942 Dr. Robert Dow and Dr. George Berglund continue research finding many venous connections to MS lesions [Arch Neurol Psychiatry. 1942;47(1):1-18] 1950 Dr. Zimmerman and Dr. Netsky note lesions are indeed venous in nature, but not caused by small thrombosis as Putnam surmised. 1965 Dr. Torben Fog noted MS lesions predominantly around small veins. 51 plaques from two cases of MS followed the venous system course. The topography of plaques in MS, with special reference to cerebral plaques. [Acta Neurol Scand, 41,Suppl. 15:1, 1965] 1980s F. Alfons Schelling, M.D. in the main venous passageways through the skulls in victims of MS he observed venous involvement in cerebral lesions of multiple sclerosis. His book outlines the history of the connection of MS to the venous system. 2009 story breaks (please view link): http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20091120/W5_liberation_091121/20091121?s_name=W5 2010 internet community goes crazy with information!!! we're everywhere. facebook, youtube, blogger, google, etc. (please view link): http://www.youtube.com/watch?v=TP7NyN_9g2U&feature=channel I hope I haven't overwhelmed you. Thanks again, Angela |
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