There is a lot of "noise" and opinion surrounding CCSVI research. Much of this is confusing, and does not help those who are looking for information.
It's important to stop and recap what we have learned in the four years since Dr. Zamboni's CCSVI research was first published, so that we might envision how future research should continue.
some facts--
1. CCSVI exists, and there is a very specific protocol to diagnose it. CCSVI is a newly defined vascular disease of slowed venous return in people with MS, discovered by Dr. Paolo Zamboni. He developed a very specific doppler ultrasound technique to diagnose this condition, which includes refluxive or absent blood flow in the jugular and azygos veins. Sadly, only a few research groups have trained with him and his technicians, and learned the proper means of diagnosis. This has lead to many false studies, confusion and erroneous results.
Buffalo Neuroimaging Analysis Center (BNAC) worked and trained with Dr. Zamboni's team, and they found CCSVI in about 60% of pwMS. This is not the 100% that Dr. Zamboni found in MS, but they did find a strong correlation. Because of this, they initiated a training program for doppler diagnosis, and there have only been a few groups that have trained and learned both parts of the exam, which includes transcranial doppler, to look for refluxive flow in the deep cerebral veins. This is the part of the testing that is causing the most problems. Marie and I have spoken to a few of these technicians, and they have commented that this protocol is like nothing they have ever learned in their doppler training before. And that's been a stumbling block.
Please note that NONE of the National MS Society funded studies utilized the full Zamboni doppler criteria to diagnose CCSVI. None of the negative studies already published have utilized this protocol.
The furthest any of these technicians got in the program was the Cleveland Clinic doppler technician, Larry Raber, who completed part 1, but not part 2, of the training program.
link to BNAC training page
The Cleveland Clinic results, which are not the complete protocol, showed 30% of those tested had CCSVI, and this lead researchers to suggest further studies are needed.
link
2. CCSVI may or may not be specific to Multiple Sclerosis. BNAC and other researchers have noted this condition in other neurological diseases (OND). Whether or not this is the same condition Dr. Zamboni noted in Multiple Sclerosis is still to be studied. There will be more research ahead.
3. People with Multiple Sclerosis have intraluminal (inside the vein) abnormalities. This was noted by the Cleveland Clinic doppler study above, as well as their autopsy study, where veins of deceased people with MS were studied. The malformations found could change bloodflow from the brain to the heart. In fact, the postmortem study revealed the presence of a novel venous valve that had not been described in anatomy textbooks.
Marked valvular and other intraluminal abnormalities with potential hemodynamic consequences were identified in 5 of 7 MS patients (7 abnormalities)
link
As far as the origin of venous narrowing is concerned, phlebographic studies of the IJVs and AZ systems demonstrated that venous stenoses were likely to be truncular venous malformations; mostly, they are intraluminal defects such as malformed valve, septa webs.
link to research
4. New technology is allowing researchers to see how these intraluminal malformations change bloodflow. This research is very, very new. Veins have not been studied in the same depth as the arteries. We know how carotid artery narrowing can affect blood flow to the brain, but we have not, until recently, looked at how jugular vein narrowing and slowed blood return can affect the brain. This research is in its infancy. It is far too soon to discount Dr. Zamboni's discovery, especially since very few researchers have bothered to study his protocol.
5. Established medical hierarchies control research. Funding for MS research comes primarily from pharmaceutical and biotech companies and goes directly to universities and MS centers. Interested parties have established a finely tuned machine, in which patient advocacy groups serve as intermediaries for corporations, patients, donors and MS specialists. This system has been in place since 1947 and the founding of the National MS Society. MS research has not looked outside of immunology and the EAE model for answers to disease aetiology since then. Vascular research and specialists do not have the same resources for funding their research. Here is a paper from the 1980s which discusses the problem of funding research into the vascular connection to MS.
"A recent debate surrounding the pathogenesis of multiple sclerosis is analysed in terms of the skills, interests and backgrounds of the medical personnel involved. It is noted that the proponents of the vascular theory possess developed expertises in interpreting disease instructural, vascular terms, whereas their opponents' skills lie in immunology or neurology. Different observers have produced different conceptions of the disease because modes of observation, and the points from which observation takes place, differ. It is also noted that the debate over the causation and treatment of MS has occurred between a large and powerful social group and a weak and marginal one. The effects of this power inequality on the production and assessment of knowledge about MS are investigated."
link
We are the weak and marginal. Yes, we know that. We can feel it, can't we? Where does this leave us?
The vascular connection to MS has been made since the 1860s. It was the failure of Dr. T.J. Putnam- the last neurologist who considered MS a disease of blocked blood flow in the forties- to find a "cure" for MS, that sent the research money into immunology. (There's a note coming on the history of Dr. Putnam, the founding of the MS Society and the elusive "cure" for MS. It's an unbelievable tale...stay tuned!)
We cannot let the discovery of intraluminal venous malformations, slowed blood flow, and the connection to the vasculature be thrown into the trash heap, simply because this has not yet produced a "cure" for MS. If MS is indeed a multi-factorial disease, we need to look at all the factors, and allow the various specialists to share their research. We will continue to encourage dialogue across specialties, to insist that researchers come to the table--to listen, read, and think before responding in a reflexive, knee-jerk fashion.
People with MS and those who love them want answers, cooperation, and more research. The NMSS studies will not be the end of this investigation. Let me quote Dr. Michael Dake-
Clearly, a genuine collaboration that respectfully encourages involvement of all interested parties could lead to the most objective, efficient and conclusive scientific investigations of CCSVI, but make no mistake; this will require the successful tackling of many tough challenges. Daunting impediments include: vested interests, silos with different cultures, hidden agendas, and diverse levels of understanding, strong egos, messenger killers, entrenched dogmatists, sanctimonious pontificators, cynical nihilists, and a whole range of biases.
from his essay, CCSVI is Real and IRs should treat it with venoplasty
Yes, it's a tough challenge....but from what I've seen over the past three years, this community is up to the challenge.
And we're not going anywhere.
Joan
