This week at the ISNVD, doctors are discussing their treatment results, and how they approach CCSVI treatment. Here are Marie's thoughts on why it is taking a long time to understand "standardized treatment" for CCSVI---
"Is CCSVI treatment real??"
"I'm progressive; has anyone had results with treatment? Write back right away..."
"I just found this site and I want to know if this treatment helps?"
Actually, no medical procedure is ever a "sure bet", even ones that are widely accepted and common.
I have two family members who had arthroscopic knee surgery for the same problem. One was cured, and years later she is still pain free. The other has now had 3 knee surgeries and has osteoarthritis because of it; she'll probably need another surgery of some kind. We all know of examples like this among our friends and family. No one argues that knee surgery is bogus, it needs to go back to trials or that those doctors were unprofessional in some way.
CCSVI treatment is much newer than knee surgery and far less is known about how exactly to implement it. CCSVI treatment is not proven to help MS at this point of course though several papers due out soon will show it improves blood flow.
Let's imagine CCSVI is a big problem for MS and miraculously (!) everyone agrees we should do something to improve bloodflow. Will treatment be effective?
Like most procedures, the answer will probably be "usually yes, sometimes no."
First there is the issue of finding the root problem in an individual with CCSVI. It sounds so easy doesn't it? look for a blockage or narrow area that carries less blood accompanied by collateral circulation (new blood vessels that carry blood around the narrow area) and balloon that area--voila! Problem solved...
But it turns out it isn't that simple. Dr. Zamboni has commented that what people should be looking for are intraluminal defects- not just areas that look "narrowed".
One form intraluminal defects can take is flap-like things, such as a crazy web of tissue that hangs out inside the lumen of the vein, or a septum which is a flap of tissue sometimes 30mm long "waving like a sail inside the vein" (as Dr Simka says) as the blood goes through. You don't usually see these with MRV, and to see them with doppler requires specialized training.
Unfortunately, if the doc decides to evaluate using venoplasty with dye to look for the defects, such flaps may also be pushed out of the way by the venogram catheter where it is invisible- it depends on where that specific person's septum or flap is attached and where the venogram catheter was inserted in relation to it.
But the flap can be a trickster and partially collapse an area of the vein higher up. On the venogram this collapsed area can fool the doctor into thinking that the collapsed area is the area that needs to be ballooned rather than the sneaky flap lower down.
Some doctors are saying that intravascular ultrasound (IVUS) will improve detection of intra-luminal defects. The IVUS is a tiny ultrasound device that is inserted with the venogram and looks directly at the vein from the inside. It can see a defect if IVUS is inserted to the area where one is attached. This technique is promising but unfortunately you can't investigate every inch of the vein with IVUS, you still have to have an idea of where to look for the defect. It's also expensive.
Other doctors are relying on the old tried and true "gold standard" venogram method for looking at the vein--injecting the dye and just plain taking time to make sure the blood appears to be flowing well before calling the work "done".
But no matter how the doctor does it, it is still possible to miss something. The simple example of the flap which may be held pressed to the side of the vein and invisible by the venogram catheter is only one example of how it could be that complete looking treatment is instead only a partial repair.
Happily CCSVI doctors today are publishing papers with their findings as they gain expertise. Soon there will be a plethora of papers available detailing pratitioner experience. Other docs will scan these papers to improve their own technique and try their hand at new ways of doing things.
Many doctors expect that it will become clear which kinds of defects respond best to venoplasty, and which really can't be repaired no matter how many times you balloon. These areas will be better served by an open procedure of some kind. Then doctors will publishe papers describing experience in that arena.
Slowly best practices will emerge and the guiding bodies for the vascular specialties will issue "standards of practice" and new doctors will have a blueprint for how to treat....even though individual doctors will continue to have favorite ways of doing things within that standard. And even then, sometimes treatment will work fantastically well, sometimes not.
Just like knees.
Those of us who aren't the forward type who jumps to the front of the line to get treatment at the trial phase of things can still contribute. Brave Dreams, the Hubbard Foundation, CCSVI Alliance are a few ways we can help. I contribute 10% of my book royalties to one of these charities, and I contribute personally when I can as well.
We are at the beginning of the beginning as Dr Zamboni says but we are off to a great start with all of these venues for giving. Thanks to every one for their contributions whether it is being in a trial, volunteering to help a charity, speaking out in your community, asking your library to carry a book, or simply donating because that is what you have time to do. Each step makes a difference, even when it feels slow, we ARE moving!
Marie
http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/standard-treatment-for-ccsvi/10150567616082211