I have deleted the March 12 blog post. It was badly written, too long and contained too many quotes. I plan to alternate this review of CCSVI history with other topics.
The Italian Professor Dr. Paolo Zamboni, observing parallels of venous disease of the legs and MS, presented a research paper to the Royal Society of Médicine in London July 1, 2006 titled "The Big Idea: Iron-dependent inflammation in venous disease and proposed parallels in multiple sclerosis." JR Soc Med 2006;99(11):589-93. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1633548/ His wife Elena Ravalli had been diagnosed with MS in 1995 at the age of 37. Her stenosed veins were successfully opened by angioplasty, and stents inserted to keep them open, under her husband's supervision that same year..
Dr. Zamboni then posted his theory - newly dubbed CCSVI -on the Internet December 5, 2008 in the Journal of Neurology, Neurosurgery and Psychiatry under the title "Chronic cerebrospinal venous insufficiently in patients with Multiple Sclerosis." http://jnnp.bmj.com/content/80/4/392.full
Joan Beal launched into MS research when her husband Jeff developed the disease in 2007 and has served a vital role in facilitating contacts among medical and scientific researchers as well as actively promoting a public discussion on the issue. Here is her testimony on what happened. (Quote taken from Thisisms.com "cheerleader" March 1, 2014 under the thread "The Drug/MRI Fallacy")
I sent the published research to my endothelial research contact at Stanford, Dr. John Cooke. We had been corresponding on the vascular connection in MS, before I'd seen Dr. Zamboni's publications. Dr, Cooke said he'd get some more opinions, and he gave the paper to his colleagues, including Dr. Dake. That's why Dr. Dake met with Dr. Zamboni at the Charing Cross Vascular Convention, and then asked Jeff to come to Stanford to be tested for CCSVI. Jeff was treated in May 2009, many months before the CTV special. (Nov 2007) We were actually interviewed in Part 2. Dr, Zamboni was not looking for publicity, he wanted to get other universities involved in the study of venous hemodynamics and MS. He was not "frustrated at the lack of progress"---BNAC was already collaborating with him on studies, as was Dr. Dake and other Italian sites. Let's get the facts straight....they are all here, in print, on this site, preserved, because This Is MS is where the discussion started. I really want people to know the facts, not just some random opinions, or story-telling.
All of us hoped to get interdisciplinary groups doing this research. Dr. Zamboni was working with neurologists in Italy and the US, and Dr. Dake approached many neurologists for help in doing a study. None of could have forseen the pushback, or medical tourism. I actually started my Facebook page in August of 2009 to get patients to "go local"-- I recommended pwMS bring the research to their local universities for testing and not travel anywhere to be treated, because it was important to stay close to home and work with local physicians if they decided to pursue treatment. We were all simply interested in contributing to the understanding of MS. Hindsight is 20/20, but let's not rewrite what happened.
Here is where I first wrote about Dr, Zamboni's CCSVI research---December, 2008. It's all here--the whole story.
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic6488.html
Joan Beal's site: http://ccsviinms.blogspot.co
The CCSVI angioplasty procedure performed on Joan's husband Jeff was (and remains) a success. Diagnosed with RRMS in March 2007, 2 years later both of his Jugulars were opened and stents inserted by Dr. Michael Dake of the Stanford Medical Center. The second Stanford angioplasty procedure was performed on Registered Nurse Mary A. Rhodes who has since written a book titled CCSVI as the Cause of Multiple Sclerosis. It has been highly recommended by the founder of the Thisisms site. Once I read it I'll post an update here.
Two "adverse events" put an end to the Stanford study and unfortunately led to dire warnings from some that the procedure was dangerous, potentially fatal. Subsequent studies determined that the CCSVI angioplasty in MS patients is NOT dangerous.
Abstract on the Stanford study can be found at: http://vmj.sagepub.com/content/17/3/131.long
In the Stanford study angioplasty was performed on 40 patients 38 of whom received stents. The stents appear to have prevented restenosis, thus maintaining blood flow in a number of patients who report ongoing satisfaction with the procedure. Unfortunately the one "adverse event" of stent migration following the angioplasty procedure at Stanford cast a doubt over the use of stents, and without a stent to keep the vein open, restenosis was likely. Interventional Radiologists admitted that while much is known about arteries, little is known about veins which are thinner and more fragile than arteries. Also, since venous blood flows back towards the heart, there is a risk that stents designed for arterial use directed away from the heart can "go with the flow" and break loose from the vein. Much work needs to be done to design stents for venous use.
Prominent CCSVI researcher Dr. Gary Siskin (Vascular and Interventional Radiology of Albany Medical Center) has estimated that one third of MS patients treated for CCSVI experience dramatic recoveries, one third only minor improvements and one third none at all. Many experience great relief immediately after intervention only to feel it slip away as the veins restenose. Some can even feel that happening immediately after the intervention. Nonetheless this experience only confirms in their mind the importance of free blood circulation in preventing the MS pathology.
Dr. Anthony B. Traboulsee, Associate Professor of Neurology at University of British Columbia, Canada and director of the MS Clinic at UBC Hospital of Vancouver Coastal Health oversaw a Registry of MS patients who had received the "liberation" treatment for CCSVI abroad. Conclusions reported by ECTRIMS on 24 September 2013. "The majority of participants' self reported benefits in general health, fatigue level, mobility and exercise level following CCSVI 'liberation' treatment are short term and decline the longer the time period from the treatment. Interestingly, while this self perception of impact of the therapy declines over time, this perception is less true when patients are asked to rate the overall procedure (PR). This may reflect psychosocial and interpersonal issues rather than be a true measure of treatment outcome."
Sorry Doctor. (Note the arrogant dismissal of Patient testimony.) What "this" reflects is that techniques need to be developed to maintain the reported benefits of opened blood flow. Perfected venous stents come to mind.
While the idea was now "out there" after Dr. Zamboni posted his paper December 2008, it remained enclosed within a small circle of Doctors/Researchers barely touching the concerned parties - MS patients and their Neurologists. His ideas went "viral" within the MS patient community only after he was interviewed on Canadian television CTV on November 21, 2009 www.ctvnews.ca/the-liberation-treatment-a-whole-ne... At that point MS patients clamored for diagnosis and, if indicated, treatment from their treating physicians and Neurologists. These requests were met with staunch resistance, even anger. Frustrated, many North Americans sought treatment wherever they could find it, often overseas. This was unfortunate because without follow-up care the risk of thrombosis was high. Dr. Zamboni was aware that up to 50% of Internal Jugular veins would restenose and require another treatment. However, each treatment could further damage the vein wall leading eventually to thrombosis; a complete blockage of the vein. Some MSers were even worse off than they had been before the procedure. The year 2010 saw numerous unfortunate angioplasty complications due to inexperience of the Interventional Radiologists and the inevitable difficulties of traveling far from home for treatment and no follow-up care.
By 2011 use of the Intravenous Ultrasound (IVUS) allowed precise measurement of the vein diameter which would dictate the size of the balloon to open the stenosis. (Balloon too small, the vein would be insufficiently opened and collapse easily. Balloon too large, the vein wall could be injured provoking inflammation and thrombosis.) A Doctor using an IVUS can also "see" the condition of the vein's valves and walls and navigate surely through any stenosis. I myself, whatever the additional cost, wouldn't even think of undergoing Angioplasty without an IVUS.
To be continued.
Tags: Multiple Sclerosis, MS, CCSVI, Dr Zamboni, Stanford angioplasty, Dr Traboulsee
The Italian Professor Dr. Paolo Zamboni, observing parallels of venous disease of the legs and MS, presented a research paper to the Royal Society of Médicine in London July 1, 2006 titled "The Big Idea: Iron-dependent inflammation in venous disease and proposed parallels in multiple sclerosis." JR Soc Med 2006;99(11):589-93. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1633548/ His wife Elena Ravalli had been diagnosed with MS in 1995 at the age of 37. Her stenosed veins were successfully opened by angioplasty, and stents inserted to keep them open, under her husband's supervision that same year..
Dr. Zamboni then posted his theory - newly dubbed CCSVI -on the Internet December 5, 2008 in the Journal of Neurology, Neurosurgery and Psychiatry under the title "Chronic cerebrospinal venous insufficiently in patients with Multiple Sclerosis." http://jnnp.bmj.com/content/80/4/392.full
Joan Beal launched into MS research when her husband Jeff developed the disease in 2007 and has served a vital role in facilitating contacts among medical and scientific researchers as well as actively promoting a public discussion on the issue. Here is her testimony on what happened. (Quote taken from Thisisms.com "cheerleader" March 1, 2014 under the thread "The Drug/MRI Fallacy")
I sent the published research to my endothelial research contact at Stanford, Dr. John Cooke. We had been corresponding on the vascular connection in MS, before I'd seen Dr. Zamboni's publications. Dr, Cooke said he'd get some more opinions, and he gave the paper to his colleagues, including Dr. Dake. That's why Dr. Dake met with Dr. Zamboni at the Charing Cross Vascular Convention, and then asked Jeff to come to Stanford to be tested for CCSVI. Jeff was treated in May 2009, many months before the CTV special. (Nov 2007) We were actually interviewed in Part 2. Dr, Zamboni was not looking for publicity, he wanted to get other universities involved in the study of venous hemodynamics and MS. He was not "frustrated at the lack of progress"---BNAC was already collaborating with him on studies, as was Dr. Dake and other Italian sites. Let's get the facts straight....they are all here, in print, on this site, preserved, because This Is MS is where the discussion started. I really want people to know the facts, not just some random opinions, or story-telling.
All of us hoped to get interdisciplinary groups doing this research. Dr. Zamboni was working with neurologists in Italy and the US, and Dr. Dake approached many neurologists for help in doing a study. None of could have forseen the pushback, or medical tourism. I actually started my Facebook page in August of 2009 to get patients to "go local"-- I recommended pwMS bring the research to their local universities for testing and not travel anywhere to be treated, because it was important to stay close to home and work with local physicians if they decided to pursue treatment. We were all simply interested in contributing to the understanding of MS. Hindsight is 20/20, but let's not rewrite what happened.
Here is where I first wrote about Dr, Zamboni's CCSVI research---December, 2008. It's all here--the whole story.
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic6488.html
Joan Beal's site: http://ccsviinms.blogspot.co
The CCSVI angioplasty procedure performed on Joan's husband Jeff was (and remains) a success. Diagnosed with RRMS in March 2007, 2 years later both of his Jugulars were opened and stents inserted by Dr. Michael Dake of the Stanford Medical Center. The second Stanford angioplasty procedure was performed on Registered Nurse Mary A. Rhodes who has since written a book titled CCSVI as the Cause of Multiple Sclerosis. It has been highly recommended by the founder of the Thisisms site. Once I read it I'll post an update here.
Two "adverse events" put an end to the Stanford study and unfortunately led to dire warnings from some that the procedure was dangerous, potentially fatal. Subsequent studies determined that the CCSVI angioplasty in MS patients is NOT dangerous.
Abstract on the Stanford study can be found at: http://vmj.sagepub.com/content/17/3/131.long
In the Stanford study angioplasty was performed on 40 patients 38 of whom received stents. The stents appear to have prevented restenosis, thus maintaining blood flow in a number of patients who report ongoing satisfaction with the procedure. Unfortunately the one "adverse event" of stent migration following the angioplasty procedure at Stanford cast a doubt over the use of stents, and without a stent to keep the vein open, restenosis was likely. Interventional Radiologists admitted that while much is known about arteries, little is known about veins which are thinner and more fragile than arteries. Also, since venous blood flows back towards the heart, there is a risk that stents designed for arterial use directed away from the heart can "go with the flow" and break loose from the vein. Much work needs to be done to design stents for venous use.
Prominent CCSVI researcher Dr. Gary Siskin (Vascular and Interventional Radiology of Albany Medical Center) has estimated that one third of MS patients treated for CCSVI experience dramatic recoveries, one third only minor improvements and one third none at all. Many experience great relief immediately after intervention only to feel it slip away as the veins restenose. Some can even feel that happening immediately after the intervention. Nonetheless this experience only confirms in their mind the importance of free blood circulation in preventing the MS pathology.
Dr. Anthony B. Traboulsee, Associate Professor of Neurology at University of British Columbia, Canada and director of the MS Clinic at UBC Hospital of Vancouver Coastal Health oversaw a Registry of MS patients who had received the "liberation" treatment for CCSVI abroad. Conclusions reported by ECTRIMS on 24 September 2013. "The majority of participants' self reported benefits in general health, fatigue level, mobility and exercise level following CCSVI 'liberation' treatment are short term and decline the longer the time period from the treatment. Interestingly, while this self perception of impact of the therapy declines over time, this perception is less true when patients are asked to rate the overall procedure (PR). This may reflect psychosocial and interpersonal issues rather than be a true measure of treatment outcome."
Sorry Doctor. (Note the arrogant dismissal of Patient testimony.) What "this" reflects is that techniques need to be developed to maintain the reported benefits of opened blood flow. Perfected venous stents come to mind.
While the idea was now "out there" after Dr. Zamboni posted his paper December 2008, it remained enclosed within a small circle of Doctors/Researchers barely touching the concerned parties - MS patients and their Neurologists. His ideas went "viral" within the MS patient community only after he was interviewed on Canadian television CTV on November 21, 2009 www.ctvnews.ca/the-liberation-treatment-a-whole-ne... At that point MS patients clamored for diagnosis and, if indicated, treatment from their treating physicians and Neurologists. These requests were met with staunch resistance, even anger. Frustrated, many North Americans sought treatment wherever they could find it, often overseas. This was unfortunate because without follow-up care the risk of thrombosis was high. Dr. Zamboni was aware that up to 50% of Internal Jugular veins would restenose and require another treatment. However, each treatment could further damage the vein wall leading eventually to thrombosis; a complete blockage of the vein. Some MSers were even worse off than they had been before the procedure. The year 2010 saw numerous unfortunate angioplasty complications due to inexperience of the Interventional Radiologists and the inevitable difficulties of traveling far from home for treatment and no follow-up care.
By 2011 use of the Intravenous Ultrasound (IVUS) allowed precise measurement of the vein diameter which would dictate the size of the balloon to open the stenosis. (Balloon too small, the vein would be insufficiently opened and collapse easily. Balloon too large, the vein wall could be injured provoking inflammation and thrombosis.) A Doctor using an IVUS can also "see" the condition of the vein's valves and walls and navigate surely through any stenosis. I myself, whatever the additional cost, wouldn't even think of undergoing Angioplasty without an IVUS.
To be continued.
Tags: Multiple Sclerosis, MS, CCSVI, Dr Zamboni, Stanford angioplasty, Dr Traboulsee
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