The presumed failure of Professor Paolo Zamboni’s « Brave Dreams » trial apparently rang the death knell for the CCSVI-MS theory. I disagree. I would say simply that the failure cast in doubt the PTA (percutaneous transluminal angioplasty) procedure WITHOUT stents as the primary treatment for CCSVI-MS.
For over 200 years MS lesions had been observed surrounding the brain’s draining veins, but it was the Italian Doctor Prof Zamboni (specialty – Vascular Surgery) who was the first to suggest a treatment – opening venous obstruction (stenoses) through angioplasty.
Dr. Zamboni posted his theory of CCSVI (Chronic Cerebro-Spinal Venous Insufficieny) on the Internet Dec 2008, The folllowing Spring 2009 Stanford Medical School Interventional Radiologist Dr Michael Dake began to perform successful PTA procedures WITH STENTS on MS patients. However, the trials were suspended following emergency heart surgery to remove a dislodged stent in one MS patient.
Ferocious opposition by the Big Pharma/Neurology/Allopath lobby followed which contributed to a FDA ban of angioplasty to treat CCSVI – MS in May 2012. For those working in the field it was observed that in general the treatment was most successful for early RRMS cases. Experience suggested that one third of MS cases enjoyed real improvement, one third minor improvement and one third none at all.
In fact, not all of those treated may have had CCSVI-MS. What kind of MS are we talking about ? It’s time now to distinguish one from the other before « treatment ».
I’ll call the Brave Dreams trial failure the CCSVI-PTA WITHOUT STENTS trial. Without stents, the veins re-stenosed which would cancel whatever benefit was derived by releasing the blood flow. Since several Stanford 2009 subjects with stents enjoy real recovery from their MS condition, the recent Brave Dreams trial would appear to be inadequate. (See the following blog post for Dr. Sclafani's more considered analysis.)
PTA (Angioplasty) focuses on the veins’ interior, the endothelium, valves, septums, stenoses, and what are known as truncular malformations of the veins. In short, a birth defect. (How that accomodates the various environmental, epidemiological factors is ignored by this theory.) I’ll call it the defective plumbing theory. Identify the defective vein, open it up, install a stent to keep it open and « voilà » a cure. CCSVI-MSers who received stents with their Stanford Angioplasty enjoy real and lasting recovery.
However, we just don’t have a record of the success or failure of this treatment elsewhere. The FDA ordered the dismantlement of the Hubbard registry which had been established precisely to track the treatment worldwide which means MSers don’t have a reliable source for treatment decision-making.
So we look at individual testimony. Joan Beal’s husband Jeff was the first to receive PTA WITH STENTS at Stanford spring 2009. He continues to enjoy a spectacular recovery. See below cheerleader’s Jan 4, 2008 comment on ThisisMs.com www.thisisms.com/
Hi Centenarian-
1. Sadly, the results of those who had maintained blood flow were NOT separated from those who restenosed. They were reported together in the "treated" group. So, we don't know what the improvements were for those who were treated and maintained venous flow. BTW, it's not "blood ssletting"--it's a repair of venous malformations, which allows for better drainage of blood, CSF and lymph. This increases perfusion, oxygenation and glucose delivery to the CNS.
2. My husband's MRIs are all at Stanford, looked at by same techs--they reported remyelination of lesions, no new lesions and reversal of gray matter since his venoplasty procedure in 2009. I do not have the MRI films on disc.
Here is Jeff today, conducting the Boston Symphony Orchestra.
https://www.youtube.com/watch?v=gp59gmg ... e=youtu.be
Here's his Emmy acceptance speech from last fall. You can watch him run up on stage. That's me smiling.
http://www.emmys.com/video/2017-creativ ... atic-score
He could barely walk or stand 10 yrs ago, spent most of the day in bed. Now he's back to composing and conducting orchestras. I really don't feel like I have to convince anyone, nor apologize. He got his life back, and I got him back. So, I'm done explaining.
Thanks for the affirmation, Ali. Hope you're well.
Joan
_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogsp
However, in my opinion Angioplasty With Stents is not the only effective treatment for CCSVI-MS. Dr. Farough Owiesy has another idea which corrresponds to my own experience. He focuses on the veins’ middle smooth muscle layer which may go into spasm to shut off the blood flow. For him the vein is supple and does not resemble rigid copper plumbing. Of course, the MSer vein may be unusually weak which causes it to collapse easily under even minor stress. His treatment ? Dr. Owiesy administers a mixture of dexamethasone/lidocaine/thiamine in the area around the Internal Jugular Vein to relax the spasm. Outcomes have been impressive, risks and expense minimal.
His patient Mark Miller was one of those who enjoyed successful PTA with stents treatment at Stanford in 2009. He posted the following on ThisisMS.com as CureIous Dec 8, 2017
« PTA cannot possibly work on all/most/some patients, because the narrowings change in both intensity and location on a daily/weekly/monthly basis…
Stents unfortunately were one of the few if only ways to prove the science behind repairing venous flow vs. symptoms. »
There, he explained the deadly flaw of the Brave Dreams trial. Fluctuation of the veins’ condition can make diagnosis uncertain. The stress caused by finding oneself in a medical setting could itself distort findings. And if the vein collapses again after PTA treatment, the benefits gained are lost.
Spring 1980 I myself found that a Shiatsu massage stopped my first major MS attack. I now think the massage released the smooth muscle layer spasm which was triggering blood back jets onto the spine. (See Blog post May 5, 2013 Pallis/Shiatsu Massage). Maybe the best treatment for an MSer in crisis is not intravenous steroids, but a good old fashioned massage.
When Dr. Owiesy presented his theory to the ISNVD (International Society of Neuro-Vascular Disease), he was apparently politely ignored by the Interventional Radiologists. It’s not only Neurologists who want to monopolize MS territory.
Then we have the Chiropractors. Dr. Michael Flanagan believed that up to 25% of MS cases are in fact caused by structural obstructions (bones, muscles, arteries) of blood and cerebro-spinal fluid flows in the brain/spine. In short, the origin of the stenosis is not INSIDE the vein but pressure EXTRINSIC to the vein. PTA seeks to free blood circulation by opening the stenosis, maybe by freeing a valve. It can only fail if bone pressure is causing the stenosis. (See CSVI Alliance www.ccsvi.org/ Dr Mark Rosa.)
Frodo of ThisisMS.com posted a study claiming there are 4 different kinds of MS.
Pattern II and pattern III MS are entities distinct from pattern I MS: evidence from cerebrospinal fluid analysis
Source: https://jneuroinflammation.biomedcentra ... 017-0929-z
jimmylegs of ThisisMS.com developed Vit B12 deficiency MS which damaged her spinal cord following years on a vegetarian diet. I doubt she has CCSVI-MS and therefore for her Angioplasty would be a mistake. She focuses on nutrition/supplements which is fine as long as one recognizes that those with CCSVI-MS need more.
So which MS do you have ?
Tags : Dr Paolo Zamboni, Brave Dreams trial, PTA Angioplasty, CCSVI-MS, Dr. Sclafani, Dr. Owiesy, Dr. Michael Flanagan, Dr. Michael Dake, ThisisMS.com
See below for quotes of supplementary information.
Wikipedia entry for Professor Zamboni :
« Paolo Zamboni (born 25 March 1957, Ferrara, Italy) is an Italian doctor who claims to have found in an unblinded preliminary study that in over 90% of the participants with multiple sclerosis there were problems in veins draining their brain, like stenosis or defective valves.[1] He also noticed high level of accumulation of iron deposits in the brain, supposedly due to restricted outflow of blood.[2]
According to Zamboni some symptoms of multiple sclerosis in his own wife as well as 73% of his patients abated after an endovascular procedure to open these veins.[3][4][5]
Zamboni named this condition chronic cerebrospinal venous insufficiency (CCSVI).[6] . (MY INSERT In his paper “CCSVI – A New paradigm and therapy for multiple sclerosis” posted on July 25, 2010, the Interventional Radiologist Salvatore J.A. Sclafani, MD refers to Dr. Zamboni’s work by writing “Chronic cerebrospinal venous insufficiency (CCSVI) is a hemodynamic condition in which cerebrospinal drainage is altered and inhibited. Outflow obstructions of the internal jugular veins (IJVs), vertebral veins, and/or azygos vein ( AZV) and their tributaries result in stasis or reflux of these outflow veins and redirection of flow through vicarious circuits…)
The theory was controversial. The National Multiple Sclerosis Society had said that, while "there is not yet enough evidence to conclude that obstruction of veins causes MS," that "[Zamboni's] hypothesis on CCSVI and its corrective treatment is a path that must be more fully explored and one that we are supporting with research funding."[7] Since 2010, there has been more research that disputes the Zamboni theory.[8][9]
https://en.wikipedia.org/wiki/Angioplasty
« Angioplasty, also known as balloon angioplasty and percutaneous transluminal angioplasty (PTA), is a minimally invasive, endovascular procedure to widen narrowed or obstructed arteries or veins, typically to treat arterial atherosclerosis. A deflated balloon attached to a catheter (a balloon catheter) is passed over a guide-wire into the narrowed vessel and then inflated to a fixed size. The balloon forces expansion of the blood vessel and the surrounding muscular wall, allowing an improved blood flow. A stent may be inserted at the time of ballooning to ensure the vessel remains open, and the balloon is then deflated and withdrawn. Angioplasty has come to include all manner of vascularinterventions that are typically performed percutaneously.
Stanford Profiles : https://profiles.stanford.edu/michael-dake
Dr. Michael D. Dake
« In 1990, Dr. Dake returned to California to assume the positions of Section Chief of Cardiovascular and Interventional Radiology at Stanford University School of Medicine and Co-director of the Catheterization and Angiography Laboratories at Stanford University Hospital. In addition to pioneering work in the area of stents for the treatment of venous obstruction and the earliest literature contributions in the field of CT angiography, the Stanford group under the leadership of Dr. Dake performed a number of medical firsts »
Tags : Dr Paolo Zamboni, Brave Dreams trial, PTA Angioplasty, CCSVI-MS, Dr. Sclafani, Dr. Owiesy, Dr. Michael Flanagan, Dr. Michael Dake, ThisisMS.com
For over 200 years MS lesions had been observed surrounding the brain’s draining veins, but it was the Italian Doctor Prof Zamboni (specialty – Vascular Surgery) who was the first to suggest a treatment – opening venous obstruction (stenoses) through angioplasty.
Dr. Zamboni posted his theory of CCSVI (Chronic Cerebro-Spinal Venous Insufficieny) on the Internet Dec 2008, The folllowing Spring 2009 Stanford Medical School Interventional Radiologist Dr Michael Dake began to perform successful PTA procedures WITH STENTS on MS patients. However, the trials were suspended following emergency heart surgery to remove a dislodged stent in one MS patient.
Ferocious opposition by the Big Pharma/Neurology/Allopath lobby followed which contributed to a FDA ban of angioplasty to treat CCSVI – MS in May 2012. For those working in the field it was observed that in general the treatment was most successful for early RRMS cases. Experience suggested that one third of MS cases enjoyed real improvement, one third minor improvement and one third none at all.
In fact, not all of those treated may have had CCSVI-MS. What kind of MS are we talking about ? It’s time now to distinguish one from the other before « treatment ».
I’ll call the Brave Dreams trial failure the CCSVI-PTA WITHOUT STENTS trial. Without stents, the veins re-stenosed which would cancel whatever benefit was derived by releasing the blood flow. Since several Stanford 2009 subjects with stents enjoy real recovery from their MS condition, the recent Brave Dreams trial would appear to be inadequate. (See the following blog post for Dr. Sclafani's more considered analysis.)
PTA (Angioplasty) focuses on the veins’ interior, the endothelium, valves, septums, stenoses, and what are known as truncular malformations of the veins. In short, a birth defect. (How that accomodates the various environmental, epidemiological factors is ignored by this theory.) I’ll call it the defective plumbing theory. Identify the defective vein, open it up, install a stent to keep it open and « voilà » a cure. CCSVI-MSers who received stents with their Stanford Angioplasty enjoy real and lasting recovery.
However, we just don’t have a record of the success or failure of this treatment elsewhere. The FDA ordered the dismantlement of the Hubbard registry which had been established precisely to track the treatment worldwide which means MSers don’t have a reliable source for treatment decision-making.
So we look at individual testimony. Joan Beal’s husband Jeff was the first to receive PTA WITH STENTS at Stanford spring 2009. He continues to enjoy a spectacular recovery. See below cheerleader’s Jan 4, 2008 comment on ThisisMs.com www.thisisms.com/
Hi Centenarian-
1. Sadly, the results of those who had maintained blood flow were NOT separated from those who restenosed. They were reported together in the "treated" group. So, we don't know what the improvements were for those who were treated and maintained venous flow. BTW, it's not "blood ssletting"--it's a repair of venous malformations, which allows for better drainage of blood, CSF and lymph. This increases perfusion, oxygenation and glucose delivery to the CNS.
2. My husband's MRIs are all at Stanford, looked at by same techs--they reported remyelination of lesions, no new lesions and reversal of gray matter since his venoplasty procedure in 2009. I do not have the MRI films on disc.
Here is Jeff today, conducting the Boston Symphony Orchestra.
https://www.youtube.com/watch?v=gp59gmg ... e=youtu.be
Here's his Emmy acceptance speech from last fall. You can watch him run up on stage. That's me smiling.
http://www.emmys.com/video/2017-creativ ... atic-score
He could barely walk or stand 10 yrs ago, spent most of the day in bed. Now he's back to composing and conducting orchestras. I really don't feel like I have to convince anyone, nor apologize. He got his life back, and I got him back. So, I'm done explaining.
Thanks for the affirmation, Ali. Hope you're well.
Joan
_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogsp
However, in my opinion Angioplasty With Stents is not the only effective treatment for CCSVI-MS. Dr. Farough Owiesy has another idea which corrresponds to my own experience. He focuses on the veins’ middle smooth muscle layer which may go into spasm to shut off the blood flow. For him the vein is supple and does not resemble rigid copper plumbing. Of course, the MSer vein may be unusually weak which causes it to collapse easily under even minor stress. His treatment ? Dr. Owiesy administers a mixture of dexamethasone/lidocaine/thiamine in the area around the Internal Jugular Vein to relax the spasm. Outcomes have been impressive, risks and expense minimal.
His patient Mark Miller was one of those who enjoyed successful PTA with stents treatment at Stanford in 2009. He posted the following on ThisisMS.com as CureIous Dec 8, 2017
« PTA cannot possibly work on all/most/some patients, because the narrowings change in both intensity and location on a daily/weekly/monthly basis…
Stents unfortunately were one of the few if only ways to prove the science behind repairing venous flow vs. symptoms. »
There, he explained the deadly flaw of the Brave Dreams trial. Fluctuation of the veins’ condition can make diagnosis uncertain. The stress caused by finding oneself in a medical setting could itself distort findings. And if the vein collapses again after PTA treatment, the benefits gained are lost.
Spring 1980 I myself found that a Shiatsu massage stopped my first major MS attack. I now think the massage released the smooth muscle layer spasm which was triggering blood back jets onto the spine. (See Blog post May 5, 2013 Pallis/Shiatsu Massage). Maybe the best treatment for an MSer in crisis is not intravenous steroids, but a good old fashioned massage.
When Dr. Owiesy presented his theory to the ISNVD (International Society of Neuro-Vascular Disease), he was apparently politely ignored by the Interventional Radiologists. It’s not only Neurologists who want to monopolize MS territory.
Then we have the Chiropractors. Dr. Michael Flanagan believed that up to 25% of MS cases are in fact caused by structural obstructions (bones, muscles, arteries) of blood and cerebro-spinal fluid flows in the brain/spine. In short, the origin of the stenosis is not INSIDE the vein but pressure EXTRINSIC to the vein. PTA seeks to free blood circulation by opening the stenosis, maybe by freeing a valve. It can only fail if bone pressure is causing the stenosis. (See CSVI Alliance www.ccsvi.org/ Dr Mark Rosa.)
Frodo of ThisisMS.com posted a study claiming there are 4 different kinds of MS.
Pattern II and pattern III MS are entities distinct from pattern I MS: evidence from cerebrospinal fluid analysis
Source: https://jneuroinflammation.biomedcentra ... 017-0929-z
jimmylegs of ThisisMS.com developed Vit B12 deficiency MS which damaged her spinal cord following years on a vegetarian diet. I doubt she has CCSVI-MS and therefore for her Angioplasty would be a mistake. She focuses on nutrition/supplements which is fine as long as one recognizes that those with CCSVI-MS need more.
So which MS do you have ?
Tags : Dr Paolo Zamboni, Brave Dreams trial, PTA Angioplasty, CCSVI-MS, Dr. Sclafani, Dr. Owiesy, Dr. Michael Flanagan, Dr. Michael Dake, ThisisMS.com
See below for quotes of supplementary information.
Wikipedia entry for Professor Zamboni :
« Paolo Zamboni (born 25 March 1957, Ferrara, Italy) is an Italian doctor who claims to have found in an unblinded preliminary study that in over 90% of the participants with multiple sclerosis there were problems in veins draining their brain, like stenosis or defective valves.[1] He also noticed high level of accumulation of iron deposits in the brain, supposedly due to restricted outflow of blood.[2]
According to Zamboni some symptoms of multiple sclerosis in his own wife as well as 73% of his patients abated after an endovascular procedure to open these veins.[3][4][5]
Zamboni named this condition chronic cerebrospinal venous insufficiency (CCSVI).[6] . (MY INSERT In his paper “CCSVI – A New paradigm and therapy for multiple sclerosis” posted on July 25, 2010, the Interventional Radiologist Salvatore J.A. Sclafani, MD refers to Dr. Zamboni’s work by writing “Chronic cerebrospinal venous insufficiency (CCSVI) is a hemodynamic condition in which cerebrospinal drainage is altered and inhibited. Outflow obstructions of the internal jugular veins (IJVs), vertebral veins, and/or azygos vein ( AZV) and their tributaries result in stasis or reflux of these outflow veins and redirection of flow through vicarious circuits…)
The theory was controversial. The National Multiple Sclerosis Society had said that, while "there is not yet enough evidence to conclude that obstruction of veins causes MS," that "[Zamboni's] hypothesis on CCSVI and its corrective treatment is a path that must be more fully explored and one that we are supporting with research funding."[7] Since 2010, there has been more research that disputes the Zamboni theory.[8][9]
https://en.wikipedia.org/wiki/Angioplasty
« Angioplasty, also known as balloon angioplasty and percutaneous transluminal angioplasty (PTA), is a minimally invasive, endovascular procedure to widen narrowed or obstructed arteries or veins, typically to treat arterial atherosclerosis. A deflated balloon attached to a catheter (a balloon catheter) is passed over a guide-wire into the narrowed vessel and then inflated to a fixed size. The balloon forces expansion of the blood vessel and the surrounding muscular wall, allowing an improved blood flow. A stent may be inserted at the time of ballooning to ensure the vessel remains open, and the balloon is then deflated and withdrawn. Angioplasty has come to include all manner of vascularinterventions that are typically performed percutaneously.
Stanford Profiles : https://profiles.stanford.edu/michael-dake
Dr. Michael D. Dake
« In 1990, Dr. Dake returned to California to assume the positions of Section Chief of Cardiovascular and Interventional Radiology at Stanford University School of Medicine and Co-director of the Catheterization and Angiography Laboratories at Stanford University Hospital. In addition to pioneering work in the area of stents for the treatment of venous obstruction and the earliest literature contributions in the field of CT angiography, the Stanford group under the leadership of Dr. Dake performed a number of medical firsts »
Tags : Dr Paolo Zamboni, Brave Dreams trial, PTA Angioplasty, CCSVI-MS, Dr. Sclafani, Dr. Owiesy, Dr. Michael Flanagan, Dr. Michael Dake, ThisisMS.com
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