Goodbye to All That--a short history of CCSVI

http://msj.sagepub.com/content/19/11/1425.full

In his recent editorial, linked above, Michael Rasminsky, emeritus professor of neurology from McGill University, sets out to close the storybook on CCSVI.  He begins his ruminations by quoting Lewis Carroll’s Queen as she confides to Alice that she was once capable of believing "impossible things".

Rasminsky would like to characterize all of the current vascular researchers, scientists, physicians, imaging specialists, patients and CCSVI advocates as believers in the impossible.  As foolish people who choose to believe, even when confronted with scientific fact.

However, Rasminsky cherry-picks his sources and studies, ignoring the stacks of research that have come from vascular and imaging researchers, to focus his attention on the mostly negative studies from neurology.  And herein lies the problem.  His belief system is based on only part of the story.  Even Alice knew better than that.

It might be of interest to those who read Rasminsky’s words to know a bit about this professor’s history--for he too, was once a believer in impossible things, and his grand efforts garnered him the attention of famed neuroscientist Andrew Huxley.  This research vaulted him from the “position of a colonial nonentity to that of a neuroscientific savant.”  (Yes, those are actually his own words about himself.) Rasminsky dared to believe that he could model nerve impulses in damaged nerve fibers, and did so in the 1970s, when such computer simulations necessitated punch cards and giant mainframe computers.  He went beyond the current technologies that were available to his peers, to make discoveries that would change how we understand demyelination and nerve impulses.

http://v1.theglobeandmail.com/servlet/story/LAC.20120605.IREMHUXLEYATL/BDAStory/BDA/deaths

That was then, this is now....

Right now, in an MRI imaging lab in Detroit, another group of scientists is compiling the data from 3D dynamic contrast enhanced MRAV and 2D time of flight MRV to study the cerebral venous drainage systems of people with MS and compare them to normals.  The man behind these studies is E. Mark Haacke, a true scientific genius and visionary.  Haacke created magnetic resonance angiographic (MRA) technologies and susceptability weighted imaging (SWI) techniques which are now used throughout the world to study neurovascular disease.  Haacke’s inventions have allowed us to see damage in the brains of traumatic brain injury patients, Alzheimer’s patients and people with MS.  His creations have allowed researchers to better understand cerebral perfusion, blood flow, oxygenation and hemodynamics within and outside the brain.

And Haacke is studying CCSVI. 

In fact, Dr. Haacke and his team would like this research to be the “hammer which removes the nail from the CCSVI coffin.”

He is finding that there are marked differences in the venous hemodynamics of people with MS and normals.  He is seeing how the venous malformations documented by Paolo Zamboni actually influence blood flow.  And he is documenting this, and publishing in peer-reviewed journals.  He is not a “believer”---he is a scientist.

Here are some papers Dr. Rasminsky left off his list of sources.  I think Dr. Haacke would like them to be considered:

1. W. Feng, D. Utriainen, G. Trifan, S. Sethi, D. Hubbard, and E. M. Haacke, "Quantitative flow measurements in the internal jugular veins of multiple sclerosis patients using magnetic resonance imaging", Rev Recent Clin Trials, vol. 7, no. 2, pp. 117-126, May 2012.
2. Haacke EM, Beggs CB, Habib C. "The Role Of Venous Abnormalities in Neurological Disease." Rev Recent Clin Trials;100-116, May 2012
3. E. M. Haacke, W. Feng, D. Utriainen, G. Trifan, Z. Wu, Z. Latif, Y. Katkuri, J. Hewett, and D. Hubbard, "Patients with Multiple Sclerosis with Structural Venous Abnormalities on MR Imaging Exhibit an Abnormal Flow Distribution of the Internal Jugular Veins", Journal of Vascular and Interventional Radiology, vol. 23, no. 1, pp. 60-68.e3, Jan. 2012
4. M. D. Dake, R. Zivadinov, and E. M. Haacke, "Chronic cerebrospinal venous insufficiency in multiple sclerosis: a historical perspective", Funct. Neurol., vol. 26, no. 4, pp. 181-195, Dec. 2011
5. G. P. Siskin, Z. J. Haskal, G. McLennan, M. D. Dake, E. M. Haacke, S. McDonald, W. Royal 3rd, S. Vedantham, D. Hubbard, S. J. Sclafani, R. T. Andrews, and H. Sauder, "Development of a research agenda for evaluation of interventional therapies for chronic cerebrospinal venous insufficiency: proceedings from a multidisciplinary research consensus panel", J Vasc Interv Radiol, vol. 22, no. 5, pp. 587-593, May 2011.
6. E.M. Haacke. Chronic cerebral spinal venous insufficiency in multiple sclerosis. Expert Rev. Neuro., 11:5-9, Jan 2011
7. Haacke, E.M., Garbern, J., Miao, Y., Habib, C., Liu, M. Iron Stores and Cerebral Veins in MS Studied by Susceptibilty Weighted Imaging (SWI).IntAngiol, 149-157, Apr 2010.
8. W. Feng, D. Utriainen, G. Trifan, S. Elias, S. Sethi, J. Hewett, and E. M. Haacke, "Characteristics of flow through the internal jugular veins at cervical C2/C3 and C5/C6 levels for multiple sclerosis patients using MR phase contrast imaging", Neurological Research, vol. accepted with minor revision.
9. D. Utriainen, W. Feng, S. Elias, D. Hubbard, and E. M. Haacke, "Using Magnetic Resonance Imaging as a Means to Study Chronic Cerebral Spinal Venous Insufficiency in Multiple Sclerosis Patients", Techniques in Vascular and Interventional Radiology, vol. in press.
10. D. Utriainen, G. Trifan, S. Sethi, S. Elias, J. Hewett, W. Feng, and E. M. Haacke, "Magnetic Resonance Imaging Signatures of Vascular Pathology in Multiple Sclerosis", Neurological Research, vol. under review.

You see, the times, they are a’changin’.  Bob Dylan

Much has changed in the world since Dr. Rasminsky was king of the neurological hill.  We have new technologies, and yes, we have the ability to communicate with each other and share evidence of these innovations online.  Lay people are able to participate in the research, by funding scientists directly, without interference by commercial interests or patient advocacy groups that receive commercial funding.  And surprisingly enough, many of the so-called Facebook advocates are intelligent and educated and more than able to understand peer-reviewed science.  We also have a vested interest in learning about CCSVI and MS.  You could say we’ve got skin in the game.  

We also understand that medical hierarchies have long favored the research of neurologists over vascular specialists.  This part of the story is as old as time--a powerful group wields its influence and dominates the weaker, lesser group.   

I write about this problem on my blog:

http://ccsviinms.blogspot.com/2013/02/medical-hierarchies-february-2-2013-we.html

So, as much as you would like this to just simply be over, Dr. Rasminsky, we have to tell you, we’re sorry.  It’s only the beginning.  Here’s the good news-- you don’t have to worry about this.  It's new technology in 2013.  Don’t let it be a concern.  Science will win out.  It always does.

most sincerely,

Joan Beal