CCSVI

[Guest guest]

The following is copied directly from her (Marie ) Facebook/Blog post.

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. 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!

Marie , RN is the author of The Comprehensive CCSVI Reference for

Practitioners and Patients and is available online and at Amazon.com