an important essay on the current state of affairs in CCSVI research and treatment by Marie Rhodes:
A long time ago there was a commercial about a financial services company. The commercial opened with two well dressed people sitting in a swank restaurant. One says to the other "Well my broker is E.F. Hutton and E.F. Hutton says....." the noise of the restaurant abruptly stops as all the other patrons and restaurant staff lean in to eavesdrop so they too can learn what "E.F. Hutton" has to say.
This commercial exploits our belief that somewhere "out there" is an expert who can solve all of our issues; the mega-mind with the true inside scoop on what we need.
CCSVI research has not reached a place where "inside scoops" are known; everyone is still working and publishing to publicly define what they have seen so peers can review it. When published, these works represent the collective medical knowledge about CCSVI as it currently stands.
Pre-CCSVI, IR doctors commonly treated stenoses in central veins for cancer patients. Such procedures give them skills in dealing with central vein stenosis, a critical step to being able to treat CCSVI. Some docs have a lot of experience with this. Yet this kind of treatment differs from CCSVI because it is very straightforward and it's narrowly focused on the stenosis itself. It doesn't look at or evaluate the cerebrospinal venous system as a whole and how it might be affecting the brain. CCSVI treatment is a whole new ball game.
CCSVI treatment is only partially about the stenosis; it is also about the brain's blood flow and how we need to think about that. For example, one of the critical debates inside of CCSVI has to do with whether the biggest problem for people with CCSVI is venous congestion or reflux in the brain.
One group of researchers thinks the main problem is congestion; the fact that the blood gets backed up behind the stenosis. They agree there may be reflux but assume treating stenoses and thus congestion will make it a non issue.
Another group believes that the bigger problem is reflux. They think churning and chaotic flow of reflux is the most damaging element in CCSVI even if there isn't obvious gross congestion.
Dr. Zamboni falls into this second group. For him and his research team the key diagnostic is a highly specialized Doppler examination which tells them whether the procedure to repair the stenosis made the blood flow smooth and "laminar" as it goes through the system, which means the blood flows straight through the veins without churning.
Many doctors don't have this kind of specialized Dopplers available and they have no way to check for reflux after treatment. They rationalize that if they remove the stenosis and congestion is gone then treatment is a "success". Yet this assumption may be premature and it will be some time before we know if docs treating CCSVI must use dopplers to evaluate whether treatment was successful. The congestion vs reflux debate is still open.
Another example of unresolved CCSVI debates is which techniques are the most effective and helpful for treating CCSVI. Dr. Zamboni has reported in peer-reviewed papers that exploring the wider venous system including areas like the lumbar veins and renal veins are important to understanding the whole CCSVI picture; he makes it clear that in his opinion it's not just about the neck.
In "Venous Collateral Circulation of the Extracranial Cerebrospinal Outflow Routes" by Zamboni et al 2008 they discuss at length the collateral pathways that re-route the blood in CCSVI. This includes the renal vein. In another paper titled "Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis" he discusses at length the importance of investigating the lumbar veins.
Currently, some investigators studiously explore these areas when doing CCSVI type procedures believing that this will result in the most thorough exam and the best possible result given what we know at this point in time. Others have come to the conclusion that there is little reason to explore the renal and lumbar veins based on their best understanding of the venous system.
Such questions are THE scientific debate about CCSVI treatment. That is what the current research is all about. As researcher doctors document what they see and submit it for peer review and publication this information and understanding will become part of the knowledge base and part of the scientific debate. Other researchers and peers will discuss and attempt to replicate the first researcher's findings. Eventually this will result in best practices guidelines.
It will take time before we get to a place where best practices can be endorsed by guiding bodies like the Society for Interventional Radiology (SIR). At that time issues like whether/when to check the lumbar veins and when/how to treat will be laid out. Currently, treating doctors do their absolute best based on their individual professional experience, knowledge and opinion to offer the safest and hopefully effective treatment to alleviate blockages on a case by case basis.
There are no established and widely acknowledged best ways of doing the best treatment yet. All of the doctors recognize this, but do we?
Recently there has been some patient chatter that amounts to "Well, my doctor is E.F. Hutton and E.F. Hutton says....." This implies that Dr X is the top guy and has somehow gotten ahead of the research and cornered the best techniques. It's important to recognize that there are no experts with all the answers at this point in time, even though different patients understandably feel loyal to the person that helped them feel better.
No one can guarantee successful treatment and no one can guarantee that their approach is the best.
However, I thoroughly believe everyone who has put their career and their reputation on the line in order to be part of this world-changing work is DOING THEIR BEST based on what they know and believe with what is currently available.
Bottom line: let's not participate in these one-up debates. While you might want to share your experience, please avoid language that is meant to imply that your guy is "E.F.Hutton". Not even Dr. Zamboni wants us to think of him like that.
Want to learn more about this topic? I have an entire chapter in my book about treatment: stents, blood thinners and stuff like that people participating in this research need to know and should have at hand.
If you haven't got a copy just go to http://ccsvibook.com