Thursday, June 10, 2010

What the heck is CCSVI?

MS was always thought of as a nerological disease until about a year ago when Dr. Zamboni looked at the disease from a vascular (blood flow) perspective. He started looking at the veins in the neck and noticed that a large number of people with MS had a narrowing of the veins in the neck. The thought is that the narrowing does not allow the blood to flow freely from the brain causing deoxygenated blood to remain in the brain longer or reflux back into the brain. This can cause several adverse reactions including lack of oxygen in the brain, inflammation and iron deposits on the brain tissue. Dr. Zamboni described this condition as Chronic Cerebrospinal Venous Insufficiency (CCSVI). To correct this blood flow condition a surgical procedure was performed. This involves inserting a tiny balloon or stent into the blocked veins in order to restore blood flow. Many of the patients saw fast improvements in symptoms.

After a W5 broadcast of Dr. Zamboni's work the controversy began. People began to call this a "cure" for MS. The MS Society, Neurologists and many others became concerned that there was not enough evidence at this time and further studies would be needed. They are correct. More studies and clinical trials are needed as the work Dr. Zamboni did was not a controlled study it was simply a sample study (without controlls) to test a hypothesis. This is a common first step completed to see if further studies are even warranted. Individuals living with MS are excited about the initial findings and want to take part in the procedure immediately as this finally gives hope for a normal life again. So who's right? Everyone is.

We need to have further research into any link between CCSVI and MS...AND if people have insufficient blood flow and there is a way to correct the problem, let's correct it. It's important that we stop calling this problem a cause of MS when in fact we don't know that it is and doing so causes controversy.

Like many others living with MS, I'm not willing to wait for Canada to approve this procedure. I have been researching various locations that are doing CCSVI treatment. The procedure is expensive and there are already very long waitlists. It appears most countries are charging between $12,000 and $18,000 with variations on what is included (scans/MRI, balloon angioplasty, accommodations, food, follow up procedures, rehabilitation).

The location that appears to be the best choice for me and my family is Sanoviv Medical Centre in Mexico. I have completed and emailed my medical forms. I should be receiving a call from one of the the Sanoviv doctors for a telephone consultation prior to booking the appointment. While I wait, I plan to focus my attention on building my strength and fundraising to help pay for the procedure.

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