"Liberation Treatment"

If you're honestly curious about the technical details of Multiple Sclerosis, don't read this blog post. Read the exhaustive Wikipedia article instead. Same goes for the CCSVI treatment. I'm going to try to simplify it here in my own words/understanding.

MS is basically a disease which sees toxins in the blood stream build up in the brain, leading to a degradation of the nerves connecting the brain to the spinal chord. This results in reduced mobility, significant pain, and eventually near immobility. A debilitating disease, those afflicted often can't work, walk, or in extreme cases even hold a fork to eat. Within the western scientific community, the cause is unknown, and there is no cure. Also, my aunt has it.

Now the deal with CCSVI. A few years ago, there was this vascular surgeon named Paolo Zamboni whose wife was diagnosed with MS. The romantic that he is, he devoted his life to finding a cure, and in 2008, he claimed that he'd found one. As a vascular surgeon, he looked at MS from a perspective of blood flow as opposed to a neurologist, who typically approaches MS from the brain. Zamboni found that in most of the MS patients he examined, the veins from the brain to the heart were constricted, leading him to believe that his was causing a backlog of iron deposits in the brain leading to MS. He performed a simple operation of re-expanding those veins and lo-and-behold most of the patients got better.

Now there's more to this of course. There's a lot of criticism for Zamboni's results: claims that it wasn't sufficiently scientific, that the numbers and proportions of sick vs. control were inappropriate -- all good criticism and there are new tests being done along the same lines all over the world now.

Now here's where things get sticky (and anecdotal). As horrible as MS is, people aren't waiting for additional clinical trials. This discovery was made in 2008, and here in 2011 we're still waiting on the scientific establishment to give the nod. MS patients all over the world are frustrated and angry, and a lot of them have been getting the treatment anyway -- with amazing results.

As my family is directly affected by MS, we've been following this "Liberation" or treatment for some time now. Canadians can't get it here, as it's still not a sanctioned procedure, so we've been looking overseas. Ameds Centrum, one of the most prominent hospitals in the world for CCSVI is in Poland, and they've been doing this procedure for about a year now. You fly in, they pick you up at the airport in an ambulance, rest you at a hotel and do an MRI the next day. If in fact you have the aforementioned vein constrictions, They can do the vein re-expansion in a few hours and then you're monitored on-site for another couple days. Costs vary depending on the amount of expansion done (if you need stents etc.).

My grandmother managed to contact one of the patients who had this procedure done, so we went to meet her on Vancouver Island this week. I must tell you, scientific study aside, CCSVI appears to work. Before her trip to Poland, this woman suffered from dramatic loss of mobility. She could walk, but only against a wall, and only very slowly. Bending down wasn't an option, turning her head made her sick and dizzy, and her concentration was vastly diminished as well. But now you wouldn't know she ever had MS. She walks, she talks (a lot), she can do squats: 100% mobility. Her cognitive response is right back where it should be, she is a changed woman. She even claims that she felt the effects almost immediately: before the procedure, she couldn't hold a fork, but 10minutes out of the operating room, she was clenching her hands into fists repeatedly. She was totally amazed.

I'm writing about this because I want to share this woman's story, and the controversy surrounding this new treatment. I also want to point out that drugs with known damaging side effects are actively being used to treat MS symptoms in this country, while there's been little or no movement on CCSVI. Dangerous drugs have somehow managed to be pushed through to the pharmacy counter in record time and yet a relatively low-risk procedure like this somehow still requires more study. The aforementioned patient voiced her sincere distaste for both the MS Society and her neurologist, and while I understand the need for careful controls on new drugs and procedures when it comes to public health, I can't help but share some of her frustration when it comes to the apparent double-standard in this case.

If they can clear their backlog of requests, my aunt will likely be going to Poland for CCSVI this year. It may not do anything, but given the low risk involved, and the potential for getting her life back, we all feel that it's a good choice.