You're So Vein...

Before my M.S. diagnosis, I'd never heard of CCSVI.  If you don't have M.S. yourself or know someone with it, you may be scratching your head right now too. Well, a brief synopsis:

Until recently, most people were under the impression that Multiple Sclerosis was an autoimmune disorder.  In the case of M.S., this means that our immune systems recognize myelin (the protective coating around our neurons) as an enemy and begin attacking it.  This in turn causes lesions or sclerosis (scars) in the brain and/or spinal cord.  Hence the name Multiple Sclerosis.

Enter Paolo Zamboni, a professor of medicine at the University of Ferrera, Italy and loving husband to his wife, Elena.  Elena was diagnosed with M.S. at the age of 37 and Zamboni, watching her decline, vowed to do whatever he could to solve the mystery of her disease.  Romantic right?  And not just that, but maybe lucky for the M.S. community too.  So, in 1995 Dr. Zamboni began his quest to save his wife...

What he discovered is that M.S. may not be an auto-immune condition at all, but a vascular disease; a matter of simple plumbing.  Basically, Zamboni proposes that the veins draining blood from our brains are blocked, malformed or even twisted, causing blood to accumulate and flow back into the brain.  This is a problem because iron is a heavy metal (not the kind you can rock out to) and can cause cell death and inflammation. And basically, what is Multiple Sclerosis?  Let's all say it together:  cell death and inflammation.

Dr. Zamboni named this disorder Chronic Cerebro-Spinal Venous Insufficiency or CCSVI.  You can stop scratching your head, now you know.

So, how would someone go about fixing faulty brain veins?  Well, according to Dr. Zamboni, you perform a venoplasty and in some cases, a vein stenting.  This procedure involves inserting an IV catheter into the femoral vein on the upper thigh.  Following on x-ray, the doctor winds it all the way up to examine the azygos vein (that drains the spinal cord), the subclavian veins (that drain our arms) and the internal jugular veins (the brain-drainers).

By squirting dye through the catheter in the thigh, you can see on x-ray where any drainage problems are happening.  If an obstruction is found, a balloon is inserted into the problem vein or veins and inflated, stretching the walls and restoring proper blood flow.  This surgery in reference to M.S. has been termed the "Liberation" procedure.  Usually the balloons are good enough to keep the veins open and flowing properly but, in some cases the veins will get lazy and go back to their old ways.  This is when a stent will be inserted to keep those suckers open...and this is where there is A LOT of controversy.  Those little stents can come loose and travel to places like your heart or more commonly, blood clots can form around the stents in place; this is called thrombosis.

This is not the only controversy surrounding CCSVI and Liberation.  Take a peek at any article, show, news spot or even talk to a few different neurologists and you'll see the major polarizing effect that this information is having on the M.S. community around the world and especially, here in Canada.

Now, I know I promised to keep this post a brief synopsis so, I'll continue on this topic over the next few entries because there is a ton of info to cover.  I also know that we Canadian M.S.ers and our families have STRONG opinions and feelings regarding how our country is addressing (or not addressing) the issue of CCSVI.

Please email me (address in my profile to the right) or comment if there is anything regarding this topic that you'd like to weigh in on and I'll address it.  I also have very strong opinions and many, many, many questions on this topic so, I am looking forward to diving in.  If any of you have had, or know someone who has had the Liberation procedure and would like to share, please feel free to contact me.  I know that there are a ton of people out there right now wondering if they should take the leap and get the procedure themselves (including me) and all we need is some more information.


As always, thanks for reading!
Love Ali.  xoxo