This is Marie writing this note.
The CCSVI idea for MS is a new and exicting development. However at this point we are not exactly sure where the scientific endpoint will be. Is MS just CCSVI? IS it a combination of CCSVI and immune system abnormalities?
No one knows for certain yet, though there is no doubt people have a personal idea about where things will end up: neuologists believe this will turn out to be nothing at all while some patients believe that angioplasty will be a quick and simple cure.
Neither is probably correct; vascular doctors can usually recognize CCSVI but they are reserving judgment about how this interacts with the immune system in MS. Most are working from the idea that CCSVI is a vascular condition separate from the diagnosis of MS.
Vascular doctors also have a huge task inside their own field independent of the immune system question: How does a vascular doctor treat the issues he sees and how does he know he got complete treatment? If the stenosis appears better on venogram in the operating room, has this changed the blood flow in the deep veins of the brain or just improved the blood flow locally where the stenosis used to be? Most doctors providing angioplasty have no way of knowing anything about the brain's blood flow even though they can be sure their repair has opened up the stenosed area.
There are technical questions too: Does the interventional radiologist use high pressure balloons? What about large diameter balloons? What about the degree of blockage that should be treated; does th IR only treat stenoses when they are blocking greater than 50-70% of the vein diameter? Are there some stenoses OK to ignore?
And what about re-stenosis? Are there areas that have pressure from outside the vein, like muscles or other tissue that rebound and pinch the area down again soon after a first treatment? Do such areas need stents? Or maybe restenosis merely means that the original stenosis was not sufficiently treated and the problem regenerated? And is it possible some kinds of stenosis need open surgery and resection of the damaged area?
In some ways doctors start over with a need to build a new experience base when they start treating CCSVI. Gary Siskin MD who was one of the earliest physicians to treat CCSVI and now has hundreds of treatments under his belt says that they initially under treated people relative to what they do now. He says CCSVI "is a whole different animal".
Over time standards of practice will be established and reliability of treatment will improve. Even then, sometimes treatment will be incomplete because it is the nature of surgery and procedures that sometimes the procedure doesn't go as well as hoped; every human being is different and some people present a technically difficult challenge for the surgeon or interventionalist. Also we know from heart angioplasty that sometimes people just re-stenose too.
As an example of CCSVI treatment evolving, my first treatment in May of 09 revealed no problems in my jugular valves or azygous though both high jugulars were stented for 90% stenosis. My second treatment with a different doctor and different equipment revealed aygous stenosis and a valve problem on the left. A third treatment a mere 7 weeks after the second (there was a unique problem the second guy couldn't fix) revealed not only additional azygous stenosis but a partial twist just after the azygous arch (a special angle on the venogram the third guy used revealed this). There was also a valve issue on the RIGHT never noted before. It is not that I developed new problems, it is that as doctors share with one another the ability to detect these anoamlies is improving over time.
As another example, in my book I tell the story of Dr Campalani, a heart doctor who has MS and was treated by Dr Zamboni's team in '06. He has had two later treatments by the same team because his valves have restenosed twice after the original procedure. Even Dr Zamboni can't assure people of any kind of a permanent repair.
At this point in time it is still true that no one else can provide that kind of assurance to us either, not any doctor (no matter his experience level) and not the researchers trying to investigate CCSVI as the cause of MS and explain how these conditions are related. Our individual bodies provide an additional area for uncertainty because the venous malformations that present vary from one to another and each person is unique.
When we first started talking about this in Dec of '08, we thought it would be easy to treat. In fact the first doctors to get involved thought it would be straightforward too, but it isn't. Unfortunately the concept of a simple repair is not only not true, but it may be a huge achilles heel for the model.
When someone is treated and doesn't see any impact, is it because they got a doctor who missed their problem? Is it because this individual needs a different kind of procedure?
We have to understand that things are still being learned.
Thankfully we are on the path towards knowledge and understanding of this issue. Research is going foward and doctors are stepping up to the plate to contribute to the knowledge base. My book is still supposed to come out mid April (www.ccsvibook.com) and it is expected to help. There is even a closed forum for doctors to share with one another about things they have learned regarding techniques and approaches that help in diagnosis and treatment of CCSVI venous malformations. This forum already has several hundred participating doctors.
Those people who are stepping up to be evaluated for CCSVI and contributing their data to a trial are part of this progress toward understanding. Thanks to everyone who is participating!
Things are moving forward and we are on our way!
Marie
http://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/evolving-therapy/10150108962577211