On Feb 4, 2016 MikiMar posted the following comment on ThisisMS.com
“CCSVI INTERVENTON. NOW I KNOW!!!
Hi
I come from Austria. I was quite skeptical before undergoing PTA. I suffer from CCSVI and I was diagnosed nearly 5 years ago.
Very confused about the treatment and potential results for years, i decided to undergo PTA in Rome.
I found a very professional Team. The neurologist, doctor Onorati spent much time with me as well as the monographer doctor Elena Righi. Finally, I met doctor Lupattelli. Everything went straightforward and I was discharged after 5 hours from the procedure.
I wish to thank Dr Lupattelli and Brain Flow team for their valuable support and...most of all... for my results!!!!
Never been so plenty of energy, my legs are no longer heavy, I can see much better and no more headache.
thanks a lot
MikiMar
This obviously is an encouraging reference and I hope her (?) positive results hold.
The following quote is taken from the Brain Flow Team site (English Version) MikiMar refers to.
www.ccsvi.net
“Brain Flow Team is a multidisciplinary group for CCSVI born in 2010. To date, the Team has the greatest experience worldwide in the interventional treatment of CCSVI patients…The first to take care of CCSVI patients was Dr. Tommaso Lupattelli , interventional radiologist and vascular surgeon who in September 2010, began to treat the first patient at Villa Salus in Reggio Emilia, Italy. He graduated in CCSVI diagnosis and treatment at University of Ferrara in 2011. Subsequently, two sonographers, Dr. Giovanni Bellagamba and Dr. Elena Righi became part of the group. In 2012, the team was finally joined by 3 neurologists, Dr Paolo Onorati, Dr.Christian Marcotulli and Dr Claudio Babiloni. Currently these multidisciplinary team is made by radiologists and neuroradiologists , vascular surgeons , cardiologists, sonographers, neurologists and many others (posturologist, medical engineer, dietician, etc.). Currently, Brain Flow Team is one of the the most experienced team for the diagnosis and treatment of CCSVI in the world with a total of 5000 Color Doppler ultrasounds and about 2400 interventional procedures already performed.
The Brain Flow team has progressively developed the technique of Prof Zamboni (the so called liberation treatment), improving it significantly in several aspects.”
For Europeans this may be the best resource for treatment of CCSVI. The Italians have taken the lead in diagnosing and treating CCSVI since one of their own – Dr. Zamboni – launched the idea publicly on the Internet December 2008. They have every interest in assuring the success of their treatment.
Thisisms.com Nov 17, 2015
“the big name is dott. Tommaso Lupattelli
by MarcF » Tue Nov 17, 2015 6:30 am
Dr. Tommaso Lupattelli is both an interventional radiologist and vascular surgeon. He is indubitably the most experienced interventionist on CCSVI treatment in the world. Indeed, Dr Tommaso Lupattelli ed his team (Brain Flow team. Visit www.ccsvi.net and go to the english version) have performed more than 2500 PTA in CCSVI patients since 2010. More than 1200 interventions have been already published in 2013 in Journal Vascular Surgery (http://www.ncbi.nlm.nih.gov/pubmed/23948669 ). To date it is the most important series ever published in the international medical literature.
the ICC Casalpalocco is an high level cardiosurgery clinic and is fully specialized in CCSVI diagnosis and treatment.
I was treated by the Brain Flow Team and I' m very well and satisfied.
good luck to everybody Mark F
Zjac was vexed that a stent was not inserted in his treated veins by the Italian team and that he hadn’t been warned of their policy before his arrival at the clinic.
Dear Zjac Nov 25, 2015 by Mark F
the use of a stent can put the patient at risk of total occlusion. Angioplasty is safer and repeatable. Once the stent is occluded , nothing you can do! As far as I know the brain flow team has implanted some stents in the azygos vein because they claim that in that vein occlusion is very rare. I had full discussion about stents with the Team before undergoing PTA. You should have asked them about stents rather than complaining.... However in Italy several people have been treated by the Team and the results are extremely good. They are very professional and prepared..do not forget that Dr Lupattelli has already treated 2500 patients with CCSVI. Many patients go to the Team after having had their procedure in other countries such as Poland ecc to get better.
Yes I'm on the payroll!!!! Because I trust more an experienced Team than original opinions about stents like yours.
NHE, Thisisms’ moderator,points out on Wed Nov 18, 2015 1:10 am
“Dr. Sclafani has demonstrated fairly convincingly that the use of Intravascular Ultrasound (IVUS) is critically important for successful treatment of CCSVI. Please see his case studies indexed at...
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic23360.html#p217664
Feb 12, 2016 1eye (Chris Sullivan of Kanata, Ontario, Canada) comments
Researchers are still analyzing social media and CCSVI. We are so fascinating. Here's an article about youtube CCSVI videos. I thought it was interesting that they found 621 youtube videos from people with MS. Of those, 86% reported improvement. That's a lot of videos and a lot of improvement. I don't think we have all 621 here in this thread by any stretch. They're from 2009-2011, which was the heyday for this, so they may no longer be on youtube.
http://www.ijmsc.org/doi/abs/10.7224/1537-2073.2014-073
Following quote from above link
“Results: A total of 1789 YouTube videos were extracted. A total of 621 videos by people with MS and 238 videos by HCPs were included. Eighty-six percent of people with MS anecdotally reported experiencing some improvement in at least one symptom. The most common message was that “CCSVI is not a miracle but worth trying.” The majority of HCPs posting videos recommended the procedure but called for continued research, particularly well-designed controlled trials. Few videos were posted by people with MS who had a negative experience with CCSVI treatment or HCPs who did not recommend the interventions.
Conclusion: Social media gives an anecdotal favorable message about CCSVI treatment for MS. The relative absence of videos offering a negative or more balanced perspective is a concern. Social persuasion of the videos plays an influential role in relating a positive impression about CCSVI, but the videos do not acknowledge the lack of supporting scientific evidence and the possible role of the placebo effect. The results of this study suggest that researchers and clinicians must actively use social media to reach out to people with MS and explain the state of the evidence on MS treatments, both positive and negative.”
Fri Feb 12, 2016 1eye continues
It's not just a he-said-she-said about people getting better. Anybody who cries placebo effect after this long is showing their bias, and lack of current information. Instead of the standard line of bull why don't they speculate about why people might feel better, that has something to do with reality, and new things we know about pwMS' endotheliums and slow brain blood flow, and, and, and...
There are good and real reasons why this procedure works. In 19 years of having MS, nothing else (and I've taken a lot of drugs) worked at all, compared to this procedure. I have been told many times that I am in better shape than most pwMS, and I believe it. Yes I still have foot drop. Yes I still get dizzy, and overheated, but I think I will continue to live my life, and my piano playing is still hacky but OK. In the last year I have organized and implemented a solar generation system on my roof, 10KW at $3.80 per hour.
I will have an electric tricycle built come springtime. I just finished getting the household financials into an accounting software package. So why can't these rich doctors see the light? They are looking the other way, trying to preserve and protect a rotten status quo, and keep the ill-gotten gains flowing".
CCSVI Alliance and ThisisMs.com are the websites to consult for updated information on CCSVI.
CCSVI Alliance doesn’t neglect the “functional” form of CCSVI which requires skeletal adjustment rather than Angioplasty. Their home page features Chiropractor Dr. Scott Rosa’s paper and video “How Craniocervical Misalignment Effects Fluid Flow”. Dr. Rosa works with MRI inventor Dr Raymond Damadian’s FONAR Corporation whose UPRIGHT multipositional MRI can register the cine (moving) cerebrospinal fluid flow as well as arterial/venous flow dynamics. He mentions how the glymphatic system cleanses brain toxins and the recently discovered existence of the brain’s lymphatic vessels. Dr. Rosa founded the Trauma Imaging Foundation (TIF) in 2012 and developed the Atlas Orthogonal Instrumental Manipulation Technique.
Europeans interested in obtaining an Upright MRI refer to Medserena Upright MRI Centre
www.mri-london.com
Once assured that the observed vein stenosis is not caused by pressure ON the vein rather than pathology WITHIN the vein, one can proceed with Venoplasty.
CCSVI Alliance www.ccsvi.org/
The site is well worth visiting and rather than repeat what they say, I insist on a visit if one is serious about understanding fully the CCSVI issue. Under The Basics find a Basic Definition of CCSVI, a Technical Definition as well as “The Origin and History of CCSVI”. Under Advanced Topics find RESEARCH DATABASE – you want SCIENCE – here is is . Treatment and Efficacy, Treatment Risks, Addressing the Myths, Research Analysis and “The Great Debate: CCSVI and MS”. Under Discussing CCSVI with your Doctor find tips on creating a medical team (Primary Care Physician, Neurologist, Interventional Radiologist – see www.sirweb.org) The Alliance gives advice on finding an Interventional Radiologist without naming anyone, obviously because the Big Pharma/Neurologist lobby has basically hindered those who treat CCSVI, forcing them “underground”.
There is also excellent advice on self care, including Joan Beal’s “Endothelial Health”.
The Hubbard Foundation site has gone down. Dr. Hubbard founded a CCSVI Registry to keep a record of CCSVI outcomes which would have been invaluable in knowing true outcomes. Unfortunately May 2012 the FDA declared “experimental” the use of devices necessary to angioplasty in treating CCSVI. In consequence insurance companies stopped paying for the treatment. Worse, the FDA banned the CCSVI Registry. After a long struggle Dr. Hubbard obtained permission from the FDA to organize a double blind study of CCSVI on MS patients. Unfortunately the study wasn’t funded, participants had to pay for their treatment. I don’t know the details of what happened, but if I am going to pay for a treatment, I would want it to be optimally designed to my individual needs and not limited in scope to fit the needs of an experiment. (Dr. Sclafani, for example considers treating more veins than those designated in the study.)
I believe the Interventional Radiologist Dr. Sclafani continues to treat CCSVI. The index of his case studies can be found at chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic23360.html#p217664 (from the ThisisMs.com website)
On the ThisisMs.com website see
CCSVI thread
Under CCSVI Dr. Sclafani Answers Some Questions
CCSVI and CCVBP (upright doc is Chiropractor Dr. Michael Flanagan)
See also Dr. Flanagan’s review article published in Neurology Research International!
http://www.hindawi.com/journals/nri/2015/794829/
Other resources :
International Society for Neurovascular Disease (ISNVD) founded 2010.
Also Joan Beal’s “The Vascular Connection”
In consulting the French MS patient participation site FORSEPS I have the impression work on CCSVI has been crushed in France. This probably reflects the power of French Neurologists and the fact that most research is published in English, not French. I am going to do what I can to introduce the English language research on central nervous system fluid circulation (blood, cerebrospinal fluid, lymphatic fluid, glymphatic fluid) in MS to FORSEPS readers.
Tags: Multiple Sclerosis treatment, MS, CCSVI, FONAR upright MRI, Angioplasty, Dr. Zamboni, Dr. Sclafani, Dr. Flanagan, ISNVD
“CCSVI INTERVENTON. NOW I KNOW!!!
Hi
I come from Austria. I was quite skeptical before undergoing PTA. I suffer from CCSVI and I was diagnosed nearly 5 years ago.
Very confused about the treatment and potential results for years, i decided to undergo PTA in Rome.
I found a very professional Team. The neurologist, doctor Onorati spent much time with me as well as the monographer doctor Elena Righi. Finally, I met doctor Lupattelli. Everything went straightforward and I was discharged after 5 hours from the procedure.
I wish to thank Dr Lupattelli and Brain Flow team for their valuable support and...most of all... for my results!!!!
Never been so plenty of energy, my legs are no longer heavy, I can see much better and no more headache.
thanks a lot
MikiMar
This obviously is an encouraging reference and I hope her (?) positive results hold.
The following quote is taken from the Brain Flow Team site (English Version) MikiMar refers to.
www.ccsvi.net
“Brain Flow Team is a multidisciplinary group for CCSVI born in 2010. To date, the Team has the greatest experience worldwide in the interventional treatment of CCSVI patients…The first to take care of CCSVI patients was Dr. Tommaso Lupattelli , interventional radiologist and vascular surgeon who in September 2010, began to treat the first patient at Villa Salus in Reggio Emilia, Italy. He graduated in CCSVI diagnosis and treatment at University of Ferrara in 2011. Subsequently, two sonographers, Dr. Giovanni Bellagamba and Dr. Elena Righi became part of the group. In 2012, the team was finally joined by 3 neurologists, Dr Paolo Onorati, Dr.Christian Marcotulli and Dr Claudio Babiloni. Currently these multidisciplinary team is made by radiologists and neuroradiologists , vascular surgeons , cardiologists, sonographers, neurologists and many others (posturologist, medical engineer, dietician, etc.). Currently, Brain Flow Team is one of the the most experienced team for the diagnosis and treatment of CCSVI in the world with a total of 5000 Color Doppler ultrasounds and about 2400 interventional procedures already performed.
The Brain Flow team has progressively developed the technique of Prof Zamboni (the so called liberation treatment), improving it significantly in several aspects.”
For Europeans this may be the best resource for treatment of CCSVI. The Italians have taken the lead in diagnosing and treating CCSVI since one of their own – Dr. Zamboni – launched the idea publicly on the Internet December 2008. They have every interest in assuring the success of their treatment.
Thisisms.com Nov 17, 2015
“the big name is dott. Tommaso Lupattelli
by MarcF » Tue Nov 17, 2015 6:30 am
Dr. Tommaso Lupattelli is both an interventional radiologist and vascular surgeon. He is indubitably the most experienced interventionist on CCSVI treatment in the world. Indeed, Dr Tommaso Lupattelli ed his team (Brain Flow team. Visit www.ccsvi.net and go to the english version) have performed more than 2500 PTA in CCSVI patients since 2010. More than 1200 interventions have been already published in 2013 in Journal Vascular Surgery (http://www.ncbi.nlm.nih.gov/pubmed/23948669 ). To date it is the most important series ever published in the international medical literature.
the ICC Casalpalocco is an high level cardiosurgery clinic and is fully specialized in CCSVI diagnosis and treatment.
I was treated by the Brain Flow Team and I' m very well and satisfied.
good luck to everybody Mark F
Zjac was vexed that a stent was not inserted in his treated veins by the Italian team and that he hadn’t been warned of their policy before his arrival at the clinic.
Dear Zjac Nov 25, 2015 by Mark F
the use of a stent can put the patient at risk of total occlusion. Angioplasty is safer and repeatable. Once the stent is occluded , nothing you can do! As far as I know the brain flow team has implanted some stents in the azygos vein because they claim that in that vein occlusion is very rare. I had full discussion about stents with the Team before undergoing PTA. You should have asked them about stents rather than complaining.... However in Italy several people have been treated by the Team and the results are extremely good. They are very professional and prepared..do not forget that Dr Lupattelli has already treated 2500 patients with CCSVI. Many patients go to the Team after having had their procedure in other countries such as Poland ecc to get better.
Yes I'm on the payroll!!!! Because I trust more an experienced Team than original opinions about stents like yours.
NHE, Thisisms’ moderator,points out on Wed Nov 18, 2015 1:10 am
“Dr. Sclafani has demonstrated fairly convincingly that the use of Intravascular Ultrasound (IVUS) is critically important for successful treatment of CCSVI. Please see his case studies indexed at...
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic23360.html#p217664
Feb 12, 2016 1eye (Chris Sullivan of Kanata, Ontario, Canada) comments
Researchers are still analyzing social media and CCSVI. We are so fascinating. Here's an article about youtube CCSVI videos. I thought it was interesting that they found 621 youtube videos from people with MS. Of those, 86% reported improvement. That's a lot of videos and a lot of improvement. I don't think we have all 621 here in this thread by any stretch. They're from 2009-2011, which was the heyday for this, so they may no longer be on youtube.
http://www.ijmsc.org/doi/abs/10.7224/1537-2073.2014-073
Following quote from above link
“Results: A total of 1789 YouTube videos were extracted. A total of 621 videos by people with MS and 238 videos by HCPs were included. Eighty-six percent of people with MS anecdotally reported experiencing some improvement in at least one symptom. The most common message was that “CCSVI is not a miracle but worth trying.” The majority of HCPs posting videos recommended the procedure but called for continued research, particularly well-designed controlled trials. Few videos were posted by people with MS who had a negative experience with CCSVI treatment or HCPs who did not recommend the interventions.
Conclusion: Social media gives an anecdotal favorable message about CCSVI treatment for MS. The relative absence of videos offering a negative or more balanced perspective is a concern. Social persuasion of the videos plays an influential role in relating a positive impression about CCSVI, but the videos do not acknowledge the lack of supporting scientific evidence and the possible role of the placebo effect. The results of this study suggest that researchers and clinicians must actively use social media to reach out to people with MS and explain the state of the evidence on MS treatments, both positive and negative.”
Fri Feb 12, 2016 1eye continues
It's not just a he-said-she-said about people getting better. Anybody who cries placebo effect after this long is showing their bias, and lack of current information. Instead of the standard line of bull why don't they speculate about why people might feel better, that has something to do with reality, and new things we know about pwMS' endotheliums and slow brain blood flow, and, and, and...
There are good and real reasons why this procedure works. In 19 years of having MS, nothing else (and I've taken a lot of drugs) worked at all, compared to this procedure. I have been told many times that I am in better shape than most pwMS, and I believe it. Yes I still have foot drop. Yes I still get dizzy, and overheated, but I think I will continue to live my life, and my piano playing is still hacky but OK. In the last year I have organized and implemented a solar generation system on my roof, 10KW at $3.80 per hour.
I will have an electric tricycle built come springtime. I just finished getting the household financials into an accounting software package. So why can't these rich doctors see the light? They are looking the other way, trying to preserve and protect a rotten status quo, and keep the ill-gotten gains flowing".
CCSVI Alliance and ThisisMs.com are the websites to consult for updated information on CCSVI.
CCSVI Alliance doesn’t neglect the “functional” form of CCSVI which requires skeletal adjustment rather than Angioplasty. Their home page features Chiropractor Dr. Scott Rosa’s paper and video “How Craniocervical Misalignment Effects Fluid Flow”. Dr. Rosa works with MRI inventor Dr Raymond Damadian’s FONAR Corporation whose UPRIGHT multipositional MRI can register the cine (moving) cerebrospinal fluid flow as well as arterial/venous flow dynamics. He mentions how the glymphatic system cleanses brain toxins and the recently discovered existence of the brain’s lymphatic vessels. Dr. Rosa founded the Trauma Imaging Foundation (TIF) in 2012 and developed the Atlas Orthogonal Instrumental Manipulation Technique.
Europeans interested in obtaining an Upright MRI refer to Medserena Upright MRI Centre
www.mri-london.com
Once assured that the observed vein stenosis is not caused by pressure ON the vein rather than pathology WITHIN the vein, one can proceed with Venoplasty.
CCSVI Alliance www.ccsvi.org/
The site is well worth visiting and rather than repeat what they say, I insist on a visit if one is serious about understanding fully the CCSVI issue. Under The Basics find a Basic Definition of CCSVI, a Technical Definition as well as “The Origin and History of CCSVI”. Under Advanced Topics find RESEARCH DATABASE – you want SCIENCE – here is is . Treatment and Efficacy, Treatment Risks, Addressing the Myths, Research Analysis and “The Great Debate: CCSVI and MS”. Under Discussing CCSVI with your Doctor find tips on creating a medical team (Primary Care Physician, Neurologist, Interventional Radiologist – see www.sirweb.org) The Alliance gives advice on finding an Interventional Radiologist without naming anyone, obviously because the Big Pharma/Neurologist lobby has basically hindered those who treat CCSVI, forcing them “underground”.
There is also excellent advice on self care, including Joan Beal’s “Endothelial Health”.
The Hubbard Foundation site has gone down. Dr. Hubbard founded a CCSVI Registry to keep a record of CCSVI outcomes which would have been invaluable in knowing true outcomes. Unfortunately May 2012 the FDA declared “experimental” the use of devices necessary to angioplasty in treating CCSVI. In consequence insurance companies stopped paying for the treatment. Worse, the FDA banned the CCSVI Registry. After a long struggle Dr. Hubbard obtained permission from the FDA to organize a double blind study of CCSVI on MS patients. Unfortunately the study wasn’t funded, participants had to pay for their treatment. I don’t know the details of what happened, but if I am going to pay for a treatment, I would want it to be optimally designed to my individual needs and not limited in scope to fit the needs of an experiment. (Dr. Sclafani, for example considers treating more veins than those designated in the study.)
I believe the Interventional Radiologist Dr. Sclafani continues to treat CCSVI. The index of his case studies can be found at chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic23360.html#p217664 (from the ThisisMs.com website)
On the ThisisMs.com website see
CCSVI thread
Under CCSVI Dr. Sclafani Answers Some Questions
CCSVI and CCVBP (upright doc is Chiropractor Dr. Michael Flanagan)
See also Dr. Flanagan’s review article published in Neurology Research International!
http://www.hindawi.com/journals/nri/2015/794829/
Other resources :
International Society for Neurovascular Disease (ISNVD) founded 2010.
Also Joan Beal’s “The Vascular Connection”
In consulting the French MS patient participation site FORSEPS I have the impression work on CCSVI has been crushed in France. This probably reflects the power of French Neurologists and the fact that most research is published in English, not French. I am going to do what I can to introduce the English language research on central nervous system fluid circulation (blood, cerebrospinal fluid, lymphatic fluid, glymphatic fluid) in MS to FORSEPS readers.
Tags: Multiple Sclerosis treatment, MS, CCSVI, FONAR upright MRI, Angioplasty, Dr. Zamboni, Dr. Sclafani, Dr. Flanagan, ISNVD
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