It’s been a long time since I said that I was going to make a post, or a series of posts about CCSVI. I started this post way back when I was on an oral medrol pack right now and was going through a ridiculously loooong relapse, I can promise, that I will do my best to link to each source that I got information from, and that I will do my best to explain things to the best of my understanding.
So! First and foremost, the big question:
What exactly is CCSVI, or Chronic Cerebrospinal Venous Insufficiency?
To put it plainly, in people who suffer from CCSVI, the veins responsible for getting blood to flow properly away from the brain and spine are not doing their job. They are, as the title of the condition says, insufficient in their current state. They’re either too small, not there, twisted up and needing to be ballooned out, or they have some other problem.
That sounds like a circulatory system problem. What does CCSVI have to do with multiple sclerosis?
Ah! Now there’s where the story gets both romantic and convoluted.
Dr. Zamboni, the brilliant man who discovered this issue, did so when he was seeking a cure and/or treatment for multiple sclerosis because his wife suffers from it. It’s a totally sweet story, and Canada’s TV5 does the best job of giving you the public interest sappy telling of it, as well as having fantastic TV quality explanations about what CCSVI is.
Check out Canada’s TV5 and their coverage of Dr. Zamboni’s discovery. It’s like watching Dateline or 60 Minutes for those of us who are only used to American network TV. It’ll explain things much more thoroughly than I ever will. I’m a much bigger fan of the brass tacks "What really matters" to friends/family style of explanation.
CCSVI is hypothesized to be the cause of MS.
AND it’s a congenital defect. This means I was born this way, and my body adapted. Dr. Zamboni and the doctors whose research follows his believe that the immune response (MS) to the reflux of blood in the brain and the deposits of heavy metals is that adaptation.
So, what exactly is the Liberation Treatment, then?
Angioplasty, plain and simple, just like they do day in and day out for people who have heart attacks. Only difference: It’s for veins. Crazy thought: Allow proper blood drainage from the brain, perhaps the metals will be removed, and some of the function will return or problems will abate. Not surprisingly, it seems to work.
Unfortunately, sometimes it has to be done more than once because the veins don’t always stay open.
Will it CURE your MS?
No. It is not a cure.
It simply means that my brain will be able to receive and release blood flow normally, as it ought to be able to.
The Liberation Treatment is a treatment for CCSVI. It just happens to make symptoms of MS better. Go figure, you help the brain, problems that happen because of the brain get better. (This is not rocket science.)
I will still need Copaxone to help with my current lesions and to help fight off future lesions. My immune system will still try to eat my nervous system. I will still HAVE multiple sclerosis, but I probably will not hurt as much or as often. 100% of patients who have received the surgery have had more energy and clearer thinking. I might get feeling back in part of my left chest and side. That would be cool. Who knows, it might even help with some of the seizures. It’s helped others.
But is it safe? This is your life we’re talking about…
This is Dr. Salvi (a pro CCSVI-treatment neurologist) from Italy, talking at a conference two weeks ago. Vince, a fellow MS sufferer who is a member of the same CCSVI group as me on Facebook kindly translated the Italian of this video for those of us in the group who wanted to watch it.
Read Below for the translation – the video is in Italian but has English Powerpoint Slides to view.
"What interests me, since there has been a lot of bull in these matters, there have been people fabricating things that have never happened. This procedure is simple and well tolerated. Whoever says there has been a death in Italy is a total idiot, (applause,someone holding sign "liberate us") and also people saying its dangerous. I personally have brought a lot of patients to undergo the procedure, and really, come and see for yourself, simple, next.
"This is the population of the first studies (in yellow). And the most important thing, I always say, and another accusation we have been getting is that we take away the therapies from everyone. We are idiots for performing these procedures, while the only thing patients need is these therapies, and accused us as outsiders.
"We have not taken therapies away from anyone. We have not taken away any traditional therapies from no one. These are stents, the famous stent they have accused us of putting everywhere and to be the cause of death. There has been one death in the world that had a stent put in, but her death had nothing to do with the stent. We do not have stents for the jugular, so we do not reccomend them."
This is all I can do for now. I’ll put more CCSVI and MS info up later, but I hope this is helpful for anyone out there other than me. I think this is a good start towards improvement for all of us.