Recently, CTV.ca published a story"CCSVI one tumultous year later: where do we go from here?" The story summarizes how neurologists and MS
Society officials, "longtime subscribers to the premise that MS is an

autoimmune disease, gave a unanimous thumbs-down to the possibility

that obstruction of venous drainage in the neck and/or chest caused

blood to back up and leak toxic iron from damaged thin-walled veins deep in the brain, killing nerve cells. Some even went so far as to call CCSVI a hoax"

For the most part – though with definite, notable exceptions – neurologists
in the US and Canadian medical communities have been slow to embrace

the treatment for CCSVI (the commonplace angioplasty, but performed in

the MS patient’s stenosed jugular and/or azygous veins ); in some

places, patients cannot receive even diagnostic testing for the

syndrome.

So North American MS patients looked further abroad for treatment, and soon videos began popping up all over the
internet talking about their CCSVI treatment in Bulgaria, Poland,

Mexico, and Costa Rica. The US and Canadian medical community has

responded to these intrepid patients with attitudes that range from

encouragement with caution, to outright alarm, and both sides are armed

with equally compelling data support points that are reasonable and

should not be ignored.

Efficacy of Treatment

In an open study, Dr. Zamboni provided CCSVI treatment for 65 MS
patients, reporting a 90%+ correlation in the occurrence of CCSVI to

MS and a lasting positive effect of the Liberation procedure (as it was

dubbed) with 70% of patients without recurrence of symptoms 2 years

post treatment.

A frequently cited study by the University at Buffalo was published inFebruary 2010 (“CCSVI Imaging
Study”) studied 500 subjects, with results demonstrating a link between

the vascular abnormalities that characterize CCSVI and MS: 56% of MS

patients were diagnosed with CCSVI while only 22% of non-MS patients

demonstrated similar venous narrowings.

However, the initial enthusiasm for this near universal correlation between CCSVI and MS was premature. The Annals of
Neurology reported two CCSVI-related studies (Sweden, Germany),

concluding “the theory that CCSVI plays a significant role in the

development of MS) must be considered unconfirmed and unproven at this

time.”

Many patients were as dismissive of these findings as neurologists have dismissive of the large number of anecdotal
reports of CCSVI-driven improvements in function spreading across the

internet. Yet in all of the emotion around the subject it is easy to

forget that there is, in fact, good reason for neurologist caution on

the subject of CCSVI.

Unlike the better known anatomy of arteries associated with the central nervous system, the venous system
is much less understood. The knowns of angioplasty in the arteries

are a guideline, not a guarantee, of the safety and efficacy of the

same treatment in the veins.

In addition, MS itself is certainly not fully understood; it is a disease with a history of
misdiagnosis, with the National Institutes of Health reporting as many

as 10-15% of MS patients are misdiagnosed, skewing clinical study

results. In response to this problem, the NIH developed the "Natural

History of MS" to create a standard clinical definition of MS.

Questions of Quality

"There is always someone trying to make a buck off sick people." MS patient onCCSVI in Multiple SclerosisFacebook entry

It can be difficult to assess the quality of international medical care,
since familiar indicators used to judge the acceptability level of US

care are not readily available. This has been changing steadily in the

past few years as self-insuring businesses and even big insurance

companies such as Anthem Blue Cross, United Health Care and other

insurers begin including international hospitals in their networks, but

for now, it means that when patients are considering international care

they must turn to the internet in search of other medical travelers.

The increased internet traffic has drawn more and more providers to the
arena, advertising their CCSVI medical travel packages. While there are

many fine healthcare options abroad, unfortunately in medicine as in

any other field there are inevitably opportunists.

Anxious patients can inadvertently contribute to the proliferation of these
opportunistic providers by focusing on a natural concern – the price of

the procedure. It is a regrettable but unavoidable reality that

choosing a healthcare provider, like many other life choices, entails

making a cost-benefit analysis .

In assessing the price treatment, one of the most important considerations patients weigh in
the cost/benefit analysis is whether to have the treatment as an

in-patient or out-patient.

Though out-patient treatment might save the patient a few thousand dollars, that benefit of
hospitalization should not be lightly dismissed. Hospitalization means

access to on-site catheterization labs, 24x7 nursing, emergency, and

ICU care, as well as specialists in emergency surgery, neurology, and

cardiology – key for MS patients who are not ambulatory or

experiencing severely impaired function.

Additionally, while the risks of the angioplasty procedure are well-understood, there
are more unknowns than knowns regarding the venoplasty treatment and

its aftermath.

For these reasons, CCSVI is most safely performed as an in-patient treatment, with patients remaining under
medical supervision for at least 48 hours after treatment; for patients

who suffer from severe loss of function, the period of post-procedure

observation should be at least 72 hours, preferably 5 days.

Another cost-benefit analysis an MS patient considering CCSVI treatment must
make is the experience of the treating medical team. Working with a

less experienced/credentialed team can save the patient a few thousand

dollars, however this benefit must be carefully weighed against the

risk factors presented by the fact that “normal venous anatomy” is not

definitely known, therefore CCSVI diagnostic testing and treatment

protocols (such as the appropriate use of stents), requires particular

experience as well as expertise.

The treating medical team ideally should be on-staff at the hospital, which ensures they
have met a number of institutional and governmental credentialing

checks regarding training, continuing education and professional

standing in the medical community.

In addition the medical team should be comprised of specialists across the
subspecialties of interventional radiology and interventional

cardiology, as well as neurology or, ideally, interventional neurology

(a new subspecialty of neurosurgery, responding to the need of

vascular interventions being done in the neck and above, as is the case

with treatment for CCSVI.).

http://www.wellsphere.com/multiple-sclerosis-ms-article/calculating-the-real-cost-of-ccsvi-treatment-for-multiple-sclerosis/1283302