If you are steadily losing your ability to walk… to move… to remain independent… your tolerance for extended debate and controversy over a possible treatment, if not a cure, is put to the test.
In this case, debate centers around “Liberation Treatment.” All around the world people with multiple sclerosis have been clamoring for action, ever since last September, when cardiovascular surgeon Dr. Paolo Zamboni released the results of a preliminary study of MS patients indicating a link to chronic cerebrospinal venous insufficiency (CCSVI), a narrowing of the veins that restricts the flow of blood from the brain, causing iron build up, in turn causing the degeneration of neurons.
Dr. Zamboni undertook this research in response to his wife’s own heartbreaking battle against MS. The resulting theory that some types of MS are caused by CCSVI, told him that it might be treated by clearing out major veins to free the blood flow. After confirming that his wife did indeed have CCSVI, he opened the veins by using a small inflated balloon to clear the blockage, a procedure that has earned the moniker Liberation Treatment. In the three years following her surgery, she has not had a relapse!
Widening his study, the doctor repeated the same procedure on 65 people with MS. In some of those patients, stents were required when when the veins collapsed upon removal of the balloon. Two years later, 73 percent of those patients were free of symptoms.
Initially, this study did not cause great fanfare in the medical community, with MS organizations, or in the news, but the two and a half million people worldwide who live with the devastating effects of MS were elated by the possibilities and turned the CCSVI/MS connection into major news, setting off a demand for allocation of funds for more research.
Dr. Zamboni’s research is challenging everything we thought we knew about MS. If CCSVI is found to be a cause, it would be possible to identify and treat the disease before damage has been done, liberating patients from debilitating symptoms. Since MS was documented and named in the 1800s, research has resulted in significant discoveries and methods of treating the disease, such as the approved disease-modifying injectable drugs. Still, the exact cause and path to a cure elude us. MS is widely considered to be a combination of an abnormal immune system response caused by genetic predisposition and/or environmental factors and/or infectious agents.
As hopeful as we who live with MS are, MS organizations around the world are cautioning patience in the face of the limited studies done thus far, and the myriad of unanswered questions… What came first, MS or CCSVI? Why don’t all people with MS have CCSVI? What are the risks of Liberation Therapy? What are the long-term results?
That is sound advice as far as it goes, but here’s the thing — when you are living with a disease that has “no cure,” and you are becoming increasingly impaired despite following doctor’s orders, you begin to feel a sense of urgency. Time matters.
Liberation Treatment may not be the answer we are all anxiously awaiting, but it is most definitely an avenue worth pursuing in earnest, one that could shed new light on an old problem. That’s why CCSVI groups are springing up all over.
The Multiple Sclerosis Resource Centre offers a comprehensive list of CCSVI organizations and groups around the world so we can stay abreast of important new developments. You can access the list HERE. People with MS must continue to advocate for ourselves.
Liberation Treatment… now that’s a phrase we could get to love.
From Care2 Groups
- MS Liberation – End Multiple Sclerosis: Created to unite Canadians, and hopefully other countries, into action to help expedite testing and research relating to CCSVI.
From The Petition Site
- End MS – Liberation Treatment: World MS Liberation Day – March on Parliament Hill in Ottawa, Canada – May 5, 2010
Related Reading on Care2
Multiple Sclerosis Education & Awareness Month
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