Sunday, August 1, 2010

Great commentary on CCSVI written by a fellow MSer.

A lot of people know someone who has Multiple Sclerosis. 350,000 people in the US alone suffer from this debilitating, crushing illness. I am one of those people.

Just nine months ago, an Italian Vascular Surgeon named Dr. Paolo Zamboni turned the world of MS treatment on it's head. Well, in so far as he was allowed. Zamboni's own wife suffered from MS, and her husband was determined to find a cure. After much research, he had a theory that iron blockages in the jugular veins, which were causing poor blood flow (and blood reflux back into the brain), may be contributing to the problem. He performed a simple one-hour angioplasty. From shortly after his wife's procedure was completed, to today (now three and a half years), his wife has not had a single symptom of MS whatsoever.

MS patients worldwide, as well as the medical community, were startled by this finding. How were venous blockages, called CCSVI (Chronic Cerebro-spinal Venous Insufficiency) by Zamboni, related to MS, which is thought of as an auto-immune disorder?

For the medical community, surprise quickly turned to skepticism. Why would a vascular procedure (that is, one related to blood flow), correct a disease that has long been assumed to be a neurological disorder?

For patients, surprise turned to excitement, and a desire to become test subjects. Not necessarily for any study, just to see if the simple angioplasty could change or halt the progression of their debilitating illness.

As of today, over 2,000 MS patients have gotten the procedure. The vast majority have had results nothing short of incredible. "I'm not waiting for the medical community, as slow as it is to approve anything, to take 10 years to approve this procedure. My quality of life and time left to enjoy my family is degenerating daily." It is this patient's, and many other patients' feeling, that early treatment with such a simple procedure, is worth every penny, regardless of medical approvals.

And it better be worth every penny, as patients are travelling around the globe, usually anywhere but the US or Canada, to get this procedure. Even without pricey international travel costs, surgery must be paid for out of pocket. This has meant families and friends raising up to 20,000 to have the procedure done.

MS sufferers feel that MS Societies in North America, as well as American media, have been turning a blind eye to what could be the biggest MS-related discovery to date. Besides one recent article in the New York Times (, there is a very noticeable lack of interest in pursuing research and generating awareness for this unproven treatment.

MS patients, who might often claim that they are too sick to have much of an internet presence or voice, have taken social media and networking by storm, to get the word out. Not content to wait for Neurologists and the MS Societies to prove the facts, patients are creating blogs, chatrooms, online forums, and hundreds of YouTube videos, documenting their own results. One quick YouTube search under CCSVI yields over 1200 search results, with several more videos being posted daily.

In these videos, patients chronicle their BEFORE symptoms and their AFTER symptoms. The results, as reported by patients, are once again nothing short of startling.

There are a few patients who have not noticed any improvement of their symptoms post-procedure, and there are specific Facebook groups they use to discuss this.

I plan to get the procedure in January 2011. I would be happy to discuss my MS, the process of getting treatment, and my results. I have access to THE pioneer in Imaging techniques to diagnose CCSVI. I have encountered all the same obstacles as the average MS patient who tries to get treatment for venous blockages. I also have access, via social networking sites, to hundreds of patients who each have their own unique story to tell. I'm sure some of them would be happy to be interviewed.

Human Rights lawsuits are being filed by a few patients, who claim that denying them access to a treatment that can radically alter the progression of one of the most debilitating diseases in the world today, is cruel and inhumane. They cite the fact that venous angioplasty and potential stenting is already a treatment that has been proven for decades, to treat blocked veins. If hospitals would do it for any patient suffering from venous blockage, why stop when it comes to MS patients? Most hospitals will perform the procedure UNLESS the patient has MS, then it is denied.

The question each patient has had to decide for him or herself, is:

Is the American medical community being more, or LESS compassionate by requiring 6-12 years of study before they would perform a treatment that could significantly benefit the lives of MS patients and their friends or family?

 LESS, my personal opinion.
Thankfully, I am having treatment here in the US, and expect it to be more and more common in the coming months.
1 Wake Up until I board the plane!! Yippee!!
Last 3 sentences written by Gina.

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