Paolo Zamboni posted his original CCSVI theory and suggested « liberation therapy » on the internet Dec 5, 2008. The renowned MS forum ThisisMS was right there at the beginning with information on the exciting new idea which promised real relief for MSers. They created the thread Chronic Cerebrospinal Venous Insufficiency (CCSVI)-·
cheerleader » Tue Dec 16, 2008 7:42 am
« Moderator's Note: This is the original thread that began the discussion of CCSVI here at ThisIsMS...Dr. Zamboni is a vascular doctor at the University of Ferrara in Italy. In his studies, he came upon a unique situation to MS patients, a reflux of their brain/spinal blood. His team initiated a new study, based on his previous observations, just published December online Dec. 5th by JNNP.
http://jnnp.bmj.com/cgi/rapidpdf/jnnp.2008.157164v1 »
Joan Beal (cheerleader) arranged the first venoplasty to treat her husband Jeff’s CCSVI – MS at Stanford Medical school April 2009. During 2009 Stanford continued to perform venoplasties until an unfortunate stent incident caused them to suspend treatments.
Dr. Ashton Embry predicted the opposition this discovery would arouse within the MS treatment lobby. I will post his great article later. (The link doesn’t work so I’ll copy the entire letter.) His son has successfully treated his MS using his father’s advice. (See Matt Embry’s MSHope http://www.mshope.com provides an excellent « Recipe » for MS healing – Diet, Supplements, CCSVI, Exercise)
So now this spring we will be 11 years since Jeff Beal’s successful venoplasty with stents. Quotes come from the following Canadian article.
www.ctvnews.ca › health › liberation-therapy-what...
« Liberation therapy: What we know about the controversial MS treatment 10 years later
« The theory of chronic cerebrospinal venous insufficiency, or CCSVI, was developed by Italian vascular surgeon Paolo Zamboni, who suggested that MS patients have abnormal veins that fail to properly drain blood from the brain and spinal cord. Opening those vessels, he reasoned, could restore blood flow and relieve symptoms -- a procedure widely known as "liberation therapy."
The theory became one of the most bitterly contested in recent medical history, embraced by desperate patients and scorned by doctors. »
« Using ultrasound, he and his research team from the University of Ferrara in Italy began finding unusual veins, or malformations, in many people with MS. Some were in the neck. Some were in the chest. Some were narrowed or blocked by their shape or by valves so that the blood drained out slowly or flowed backward into the brain -- causing, he said, pressure in the veins upstream to rise, damaging the blood vessels and somehow leading to an immune reaction.
Zamboni proposed that reversing flow to normal was the key to treating the disease. To do this, doctors performed angioplasty -- inserting a balloon into narrowed or blocked veins.
In a key trial of 65 MS patients, the Italian team documented improvements in blood drainage, quality of life, and a decrease in MS attacks and the brain lesions used to measure the progression of the disease.
The improvements didn't always last. But Zamboni's message was simple. As he told W5, "In my mind, this was unbelievable evidence that further study was necessary.” Zamboni’s own wife was treated and her MS symptoms improved. »
Sandra Birrerell paid $5,000 Albany clinic «I had incredible results. I was walking totally unassisted for the first time in over eight years," said Birrell.
While her muscle spasms improved, over time some of the benefits disappeared. Others remained and she still believes the treatment saved her from a terrible fate. "I haven't choked since the angioplasty," she said. "You can't placebo that." »
« Earlier this year, the Cochrane Reviews -- a respected international agency -- concluded that angioplasty for CCSVI in people with MS"did not provide benefit on disability, physical or cognitive functions or quality of life.”
Just as many neurologists believed it would all along, science had drawn a curtain on CCSVI. »
« If the theory is dead, explain that to the 200 scientists and patients who gathered in May to discuss blood flow and the brain at the Santa Anna Hospital in Ferrara, Italy.
Researchers from China, the U.S. and Europe attended the two-day conference hosted by the International Society for Neurovascular Disease (ISNVD), a non-profit association set up by researchers intrigued by Zamboni's initial work. »
« Clive Beggs "Many clinicians have jumped to the conclusion (angioplasty) didn't work. To physiologists like myself, I look at those results and think, 'That's extremely interesting -- why did they improve at the beginning, and if they regressed, why did they regress?'"
The core idea is that, for a brain to be healthy, it must take in blood with its nutrients and oxygen and expel the used blood in an orderly fashion, with the veins regulating out-flow. Beggs collaborates with researchers pursuing the health effects of impaired blood flow.
"What we seem to be finding is if the blood can't get out, this intra-cranial compliance is impaired. How that manifests itself in disease is another matter," said Beggs, who says there are more questions than answers right now. »
« Canadian electrical engineer Trevor Tucker seems out of place at the Ferrara meeting. He spent his life working on guidance systems for rockets in Ottawa.
The link here is his son Andrew, who has MS. Frustrated with the lack of effective treatments, Andrew went to a clinic in the U.S. where he was diagnosed with restricted venous flow from the brain. He was treated with angioplasty nine years ago. Like many others, his symptoms improved at first - and then like many others, regressed. A second angioplasty worked better, and Tucker says Andrew remains well and symptom-free. »
« Also at the conference was Mark Haacke, a scientist from Wayne State University who studies better ways to see inside the brain. He helped found the ISNVD the year after Zamboni’s work first went public. »
« The question really is "if there are flow obstructions, where are they taking place?" »
« Spurred on by Zamboni’s work, researchers in China are also now investigating the effects of abnormal outflow from the jugular veins and its link to neurological diseases.
There appears to be a rebranding of the concept- as they focus on internal jugular vein stenosis (IJVS) with no mention of controversial term CCSVI. They report that, in patients with poor blood outflow, there are formation of brain lesions. »
There are other testimonies of successful angioplasties such as Carol Schumacher who directs the Annette Funicello Foundation and Florence D’Eon who now has no sign of MS.
« The fact Zamboni is still studying brain blood flow and neurologicial diseases will no doubt frustrate many of those who have considered the CCSVI saga. »
The Interventional Radiologist Salvatore Sclafani (Thisisms.com www.thisisms.com/under CCSVI thread find“Dr. Sclafani Answers some Questions”)
was asked to cease performing angioplasties for CCSVI-MS by his New York clinic which feared harrassing lawsuits. He now is assocated with the CCSVI clinic in Poznan, Poland.
Maybe one of the best MSer’s blogs on undergoing the angioplasty for CCSVI-MS can be found at http://irontinafnl.blogspot.com/?m=1. Both Part 1 « Out of the Silence » and Part 2 « Fear no Lesion" are well worth reading.
Irontina first underwent Venoplasty (Angioplasty) at the Ohio CCSVI clinic December 2018. Initially she enjoyed impressive improvements in function, but after 6 weeks decline set in. When she went off blood thinner before a May 2019 surgery, she suffered serious upsurge in symptoms within 24 hours which disappeared upon resuming the blood thinner. (Does this mean that after Venoplasty one should take blood thinners indefinitely ?)
September 2019 she traveled to Poznan, Poland with her family to be treated by at the CCSVI Clinic there. The IR found the right internal jugular vein to be100% blocked with scar tissue. They were able to open the left jugular vein, the azygos and left renal vein as well. It was surmised that the jugulars were injured when the balloons opening the earlier venoplasty were too large leading to blood clots which in turn can lead to scarring if they don’t dissolve.
Now, this is exactly my fear, that the venoplasty could injure the jugular veins causing them to be entirely blocked. I’m certain Irontina regrets not having gone to the Polish clinic initially.
From the Polish site I can see that their clinic consultants include the experienced Interventional Radiologist Dr. Salvatore Sclafani as well as longtime CCSVI researcher Dr. Franz Schelling who, according to Dr Flanagan, coined the term « venous back jets ».
Another factor which causes me to hesitate is that since I injured my back I’m convinced my major problem now is sluggish cerebro-spinal fluid flow, that even if blood circulation through the veins improves, that won’t lead to major improvements in my condition.
To conclude I will quote the excellent TW Tucker paper.
Select item 219586251.
A physics link between venous stenosis and multiple sclerosis.
Tucker TW.
Med Hypotheses. 2011 Dec;77(6):1074-8. doi: 10.1016/j.mehy.2011.09.006. Epub 2011 Sep 29.
PMID:
Abstract
This paper hypothesizes that a stenosis or obstruction at a lower extremity of an internal jugular vein (IJV) would, in accordance with the physics of fluid dynamics, cause a standing pressure wave within the vein. This pressure wave would possess regions of large pressure fluctuations and other regions of relatively little fluctuation which also have substantially lower peak pressure values. If the wavelength of the hypothesized pressure wave is comparable to the distance from the obstruction to the venule end of the capillary bed, then a region of high pressure fluctuation would exist at the venules. Depending on the degree of obstruction, the pressure fluctuations at the venules of the capillary bed would be substantially greater than those that would exist in a healthy unobstructed vein. This increase in blood pressure fluctuation located at the venule end of the capillary bed, which would be equivalent to local hypertension, is predicted to reduce the pressure drop across the bed which, in turn, would reduce blood flow through the bed in accordance with Darcy's Law. Such a reduction in blood flow through the bed would be accompanied by a reduction in the transfer of oxygen, glucose and other nutrients into the brain tissue in accordance with Fick's Principle. The reduction in oxygen levels in the brain tissue (i.e. hypoxia), would, in turn, be associated with increased fatigue and decreased mental acuity in the subject patient. Also the deprivation of oxygen in the brain tissue may result in the death of oligodendrocyte cells, which, in turn would result in the deterioration of the myelin surrounding the brain's neural axons. In addition, the paper also predicts that, in cases of extreme obstruction, the predicted localized hypertension at the venule end of the capillary bed may be sufficiently high to cause a localized disruption in the blood-brain barrier. Such a disruption of the blood-brain barrier could then allow the migration of leukocytes (auto-immune attack cells), from the blood into the brain tissue, enabling them to attack myelin, which has degenerated or deteriorated from the reduction in repair function normally provided by oligodendrocyte cells. Such leukocyte attack on myelin has long been associated with multiple sclerosis.
Copyright © 2011 Elsevier Ltd. All rights reserved.
Tags: CCSVI, Dr. Paolo Zamboni, Dr. Salvatore Sclafani, Dr. Franz Schelling, CCSVI clinic Poznan Poland, TTucker, Ashton Embry, Multiple Sclerosis
.
cheerleader » Tue Dec 16, 2008 7:42 am
« Moderator's Note: This is the original thread that began the discussion of CCSVI here at ThisIsMS...Dr. Zamboni is a vascular doctor at the University of Ferrara in Italy. In his studies, he came upon a unique situation to MS patients, a reflux of their brain/spinal blood. His team initiated a new study, based on his previous observations, just published December online Dec. 5th by JNNP.
http://jnnp.bmj.com/cgi/rapidpdf/jnnp.2008.157164v1 »
Joan Beal (cheerleader) arranged the first venoplasty to treat her husband Jeff’s CCSVI – MS at Stanford Medical school April 2009. During 2009 Stanford continued to perform venoplasties until an unfortunate stent incident caused them to suspend treatments.
Dr. Ashton Embry predicted the opposition this discovery would arouse within the MS treatment lobby. I will post his great article later. (The link doesn’t work so I’ll copy the entire letter.) His son has successfully treated his MS using his father’s advice. (See Matt Embry’s MSHope http://www.mshope.com provides an excellent « Recipe » for MS healing – Diet, Supplements, CCSVI, Exercise)
So now this spring we will be 11 years since Jeff Beal’s successful venoplasty with stents. Quotes come from the following Canadian article.
www.ctvnews.ca › health › liberation-therapy-what...
« Liberation therapy: What we know about the controversial MS treatment 10 years later
« The theory of chronic cerebrospinal venous insufficiency, or CCSVI, was developed by Italian vascular surgeon Paolo Zamboni, who suggested that MS patients have abnormal veins that fail to properly drain blood from the brain and spinal cord. Opening those vessels, he reasoned, could restore blood flow and relieve symptoms -- a procedure widely known as "liberation therapy."
The theory became one of the most bitterly contested in recent medical history, embraced by desperate patients and scorned by doctors. »
« Using ultrasound, he and his research team from the University of Ferrara in Italy began finding unusual veins, or malformations, in many people with MS. Some were in the neck. Some were in the chest. Some were narrowed or blocked by their shape or by valves so that the blood drained out slowly or flowed backward into the brain -- causing, he said, pressure in the veins upstream to rise, damaging the blood vessels and somehow leading to an immune reaction.
Zamboni proposed that reversing flow to normal was the key to treating the disease. To do this, doctors performed angioplasty -- inserting a balloon into narrowed or blocked veins.
In a key trial of 65 MS patients, the Italian team documented improvements in blood drainage, quality of life, and a decrease in MS attacks and the brain lesions used to measure the progression of the disease.
The improvements didn't always last. But Zamboni's message was simple. As he told W5, "In my mind, this was unbelievable evidence that further study was necessary.” Zamboni’s own wife was treated and her MS symptoms improved. »
Sandra Birrerell paid $5,000 Albany clinic «I had incredible results. I was walking totally unassisted for the first time in over eight years," said Birrell.
While her muscle spasms improved, over time some of the benefits disappeared. Others remained and she still believes the treatment saved her from a terrible fate. "I haven't choked since the angioplasty," she said. "You can't placebo that." »
« Earlier this year, the Cochrane Reviews -- a respected international agency -- concluded that angioplasty for CCSVI in people with MS"did not provide benefit on disability, physical or cognitive functions or quality of life.”
Just as many neurologists believed it would all along, science had drawn a curtain on CCSVI. »
« If the theory is dead, explain that to the 200 scientists and patients who gathered in May to discuss blood flow and the brain at the Santa Anna Hospital in Ferrara, Italy.
Researchers from China, the U.S. and Europe attended the two-day conference hosted by the International Society for Neurovascular Disease (ISNVD), a non-profit association set up by researchers intrigued by Zamboni's initial work. »
« Clive Beggs "Many clinicians have jumped to the conclusion (angioplasty) didn't work. To physiologists like myself, I look at those results and think, 'That's extremely interesting -- why did they improve at the beginning, and if they regressed, why did they regress?'"
The core idea is that, for a brain to be healthy, it must take in blood with its nutrients and oxygen and expel the used blood in an orderly fashion, with the veins regulating out-flow. Beggs collaborates with researchers pursuing the health effects of impaired blood flow.
"What we seem to be finding is if the blood can't get out, this intra-cranial compliance is impaired. How that manifests itself in disease is another matter," said Beggs, who says there are more questions than answers right now. »
« Canadian electrical engineer Trevor Tucker seems out of place at the Ferrara meeting. He spent his life working on guidance systems for rockets in Ottawa.
The link here is his son Andrew, who has MS. Frustrated with the lack of effective treatments, Andrew went to a clinic in the U.S. where he was diagnosed with restricted venous flow from the brain. He was treated with angioplasty nine years ago. Like many others, his symptoms improved at first - and then like many others, regressed. A second angioplasty worked better, and Tucker says Andrew remains well and symptom-free. »
« Also at the conference was Mark Haacke, a scientist from Wayne State University who studies better ways to see inside the brain. He helped found the ISNVD the year after Zamboni’s work first went public. »
« The question really is "if there are flow obstructions, where are they taking place?" »
« Spurred on by Zamboni’s work, researchers in China are also now investigating the effects of abnormal outflow from the jugular veins and its link to neurological diseases.
There appears to be a rebranding of the concept- as they focus on internal jugular vein stenosis (IJVS) with no mention of controversial term CCSVI. They report that, in patients with poor blood outflow, there are formation of brain lesions. »
There are other testimonies of successful angioplasties such as Carol Schumacher who directs the Annette Funicello Foundation and Florence D’Eon who now has no sign of MS.
« The fact Zamboni is still studying brain blood flow and neurologicial diseases will no doubt frustrate many of those who have considered the CCSVI saga. »
The Interventional Radiologist Salvatore Sclafani (Thisisms.com www.thisisms.com/under CCSVI thread find“Dr. Sclafani Answers some Questions”)
was asked to cease performing angioplasties for CCSVI-MS by his New York clinic which feared harrassing lawsuits. He now is assocated with the CCSVI clinic in Poznan, Poland.
Maybe one of the best MSer’s blogs on undergoing the angioplasty for CCSVI-MS can be found at http://irontinafnl.blogspot.com/?m=1. Both Part 1 « Out of the Silence » and Part 2 « Fear no Lesion" are well worth reading.
Irontina first underwent Venoplasty (Angioplasty) at the Ohio CCSVI clinic December 2018. Initially she enjoyed impressive improvements in function, but after 6 weeks decline set in. When she went off blood thinner before a May 2019 surgery, she suffered serious upsurge in symptoms within 24 hours which disappeared upon resuming the blood thinner. (Does this mean that after Venoplasty one should take blood thinners indefinitely ?)
September 2019 she traveled to Poznan, Poland with her family to be treated by at the CCSVI Clinic there. The IR found the right internal jugular vein to be100% blocked with scar tissue. They were able to open the left jugular vein, the azygos and left renal vein as well. It was surmised that the jugulars were injured when the balloons opening the earlier venoplasty were too large leading to blood clots which in turn can lead to scarring if they don’t dissolve.
Now, this is exactly my fear, that the venoplasty could injure the jugular veins causing them to be entirely blocked. I’m certain Irontina regrets not having gone to the Polish clinic initially.
From the Polish site I can see that their clinic consultants include the experienced Interventional Radiologist Dr. Salvatore Sclafani as well as longtime CCSVI researcher Dr. Franz Schelling who, according to Dr Flanagan, coined the term « venous back jets ».
Another factor which causes me to hesitate is that since I injured my back I’m convinced my major problem now is sluggish cerebro-spinal fluid flow, that even if blood circulation through the veins improves, that won’t lead to major improvements in my condition.
To conclude I will quote the excellent TW Tucker paper.
Select item 219586251.
A physics link between venous stenosis and multiple sclerosis.
Tucker TW.
Med Hypotheses. 2011 Dec;77(6):1074-8. doi: 10.1016/j.mehy.2011.09.006. Epub 2011 Sep 29.
PMID:
Abstract
This paper hypothesizes that a stenosis or obstruction at a lower extremity of an internal jugular vein (IJV) would, in accordance with the physics of fluid dynamics, cause a standing pressure wave within the vein. This pressure wave would possess regions of large pressure fluctuations and other regions of relatively little fluctuation which also have substantially lower peak pressure values. If the wavelength of the hypothesized pressure wave is comparable to the distance from the obstruction to the venule end of the capillary bed, then a region of high pressure fluctuation would exist at the venules. Depending on the degree of obstruction, the pressure fluctuations at the venules of the capillary bed would be substantially greater than those that would exist in a healthy unobstructed vein. This increase in blood pressure fluctuation located at the venule end of the capillary bed, which would be equivalent to local hypertension, is predicted to reduce the pressure drop across the bed which, in turn, would reduce blood flow through the bed in accordance with Darcy's Law. Such a reduction in blood flow through the bed would be accompanied by a reduction in the transfer of oxygen, glucose and other nutrients into the brain tissue in accordance with Fick's Principle. The reduction in oxygen levels in the brain tissue (i.e. hypoxia), would, in turn, be associated with increased fatigue and decreased mental acuity in the subject patient. Also the deprivation of oxygen in the brain tissue may result in the death of oligodendrocyte cells, which, in turn would result in the deterioration of the myelin surrounding the brain's neural axons. In addition, the paper also predicts that, in cases of extreme obstruction, the predicted localized hypertension at the venule end of the capillary bed may be sufficiently high to cause a localized disruption in the blood-brain barrier. Such a disruption of the blood-brain barrier could then allow the migration of leukocytes (auto-immune attack cells), from the blood into the brain tissue, enabling them to attack myelin, which has degenerated or deteriorated from the reduction in repair function normally provided by oligodendrocyte cells. Such leukocyte attack on myelin has long been associated with multiple sclerosis.
Copyright © 2011 Elsevier Ltd. All rights reserved.
Tags: CCSVI, Dr. Paolo Zamboni, Dr. Salvatore Sclafani, Dr. Franz Schelling, CCSVI clinic Poznan Poland, TTucker, Ashton Embry, Multiple Sclerosis
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