Monday, November 1, 2010

Day 19 - CCSVI

Almost exactly a year ago at this time, we started getting emails and comments from friends and family about  a new breakthrough in MS called Chronic cerebro-spinal venous insufficiency (CCSVI). In November 2009, it was reported that an Italian doctor, Paolo Zamboni claimed that MS was not an autoimmune disease and that it was due to malformed or blocked veins in the neck that couldn't adequately drain blood from the brain. Zamboni claimed a buildup of iron in the brain ensues from this blockage, causing vertigo, fatigue, vision problems and loss of sensation. He also announced a new "liberation" procedure that involved using a form of angioplasty — injecting and inflating balloon catheters into dilated veins to increase blood flow.

Since we announced that we were doing the stem cell treatment, a lot of people have asked us if we had considered doing this liberation treatment instead.

To be honest, before we even knew about the stem cell treatment, we tried desperately to get Chris' neck scanned to see if he had CCSVI. Unfortunately, in Canada and the United States this scan is not covered as it is considered experimental. Last May, after trying for months, we eventually were able to get Chris on a waiting list to have his neck scanned (if it was confirmed that he did have it, we would need to pay upwards of $20,000 to have the liberation procedure performed in another country such as Costa Rica, Germany, India and Kuwait), but to this day we have yet to hear anything. There are trials now going on in Canada and the United States, but since there are approximately 75,000 Canadians with MS, the spaces filled immediately.

Now, after learning a lot about both treatments, there is not a questions in our minds that we made the right decision. Since the announcement of this treatment, several different trials have come out with mixed results.
A large ongoing study in Buffalo only showed that 62% of MS patients had CCSVI, but so did 26% of the healthy participants, as well as 45% of participants with other neurological disorders. A medical centre in Amsterdam has found no difference between the veins of MS patients and healthy participants. Also, while many patients diagnosed with CCSVI have undergone the treatment have reported great results, there are patients who have undergone the procedure and have not felt any improvements. This procedure is also relatively new, and there are no research on the longterm effects. We definetly understand why so many people are spending money to get it done. When we had no other options we were definetly planning on doing it. It just wasn't the right choice for us.

In other news, Chris is still doing well. We are expecting a call from the nurse coordinator tomorrow to see if there is anything else Chris can take to bring down his hives on his arms (yes, they are still there!).

And on a much lighter note, here are some photos of our Halloween costume last night. We were bikers and obviously really tough ones.

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