IVCC/CCSVI, liens et articles de ce mercredi!
Liens sur le symposium CCSVI de lundi entre autres! Munissez-vous de la barre google de traduction!
*Une lettre d'une maman de fils SEPien qui explique combien il a été compliqué de trouver une place pour l'OP CCSVI (Inde trop chère, liste d'attente trop longue en Pologne), et enfin la Libération au Mexique!
http://www.facebook.com/photo.php?pid=284226&id=129690210385616
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Woman ready to try unproven procedure to repel disease
Jayne Thomas isn't concerned about the risks. She's willing to face the unknowns. She isn't willing to wait.
Time and her body are Thomas' enemies. They've cursed the St. Catharines woman to a wheelchair, and she knows it will only get worse.
So she will travel to New York State in the fall for an operation that's purportedly able to treat her multiple sclerosis, the disease turning her body against her.
The treatment, started in 2009 by an Italian doctor, remains unproven. Studies and clinical trials, some funded by the MS Society of Canada, are ongoing. But as it stands there are more questions than answers.
Thomas is unconcerned. She'll roll the dice, knowing that after travelling to the United States and spending $8,000, her condition might remain unchanged.
"Unless you have MS, you don't know. You can't know," said Thomas.
"You live in fear because you don't know when it is going to hit you. You just don't know when you will wake up in the morning and you cannot put your foot on the floor and stand up."
The operation treats chronic cerebrospinal venous insufficiency, or CCSVI. The Italian doctor Paolo Zamboni said in November that reduced red blood flow to the brain because of CCSVI may be associated with MS, an illness that attacks the brain and spinal cord.
Zamboni's idea is that the CCSVI could cause an iron overload in the brain and spinal cord, causing MS. Through angioplasty, a procedure that expands obstructed blood vessels, he said the condition of MS patients can be improved.
Thomas said she first learned about it from the CTV program W-5 shortly after Zamboni made his findings public.
"I was watching it with my daughter and she started to cry and my heart began to race," she said. "I immediately went on the computer to find out more about it."
*Saskatchewan’s Wall vows to fund contentious MS treatment
Premier puts province at forefront of Canadian efforts to introduce a treatment that has experts – and those with MS – divided
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"A scientific revolution occurs, according to Kuhn, when scientists encounter anomalies which cannot be explained by the universally accepted paradigm within which scientific progress has thereto been made. The paradigm, in Kuhn's view, is not simply the current theory, but the entire worldview in which it exists, and all of the implications which come with it. It is based on features of landscape of knowledge that scientists can identify around them. There are anomalies for all paradigms, Kuhn maintained, that are brushed away as acceptable levels of error, or simply ignored and not dealt with (a principal argument Kuhn uses to reject Karl Popper's model of falsifiability as the key force involved in scientific change). Rather, according to Kuhn, anomalies have various levels of significance to the practitioners of science at the time.
To put it in the context of early 20th century physics, some scientists found the problems with calculating Mercury's perihelion more troubling than the Michelson-Morley experiment results, and some the other way around. Kuhn's model of scientific change differs here, and in many places, from that of the logical positivists in that it puts an enhanced emphasis on the individual humans involved as scientists, rather than abstracting science into a purely logical or philosophical venture.
When enough significant anomalies have accrued against a current paradigm, the scientific discipline is thrown into a state of crisis, according to Kuhn. During this crisis, new ideas, perhaps ones previously discarded, are tried. Eventually a new paradigm is formed, which gains its own new followers, and an intellectual "battle" takes place between the followers of the new paradigm and the hold-outs of the old paradigm.
Again, for early 20th century physics, the transition between the Maxwellian electromagnetic worldview and the Einsteinian Relativistic worldview was neither instantaneous nor calm, and instead involved a protracted set of "attacks," both with empirical data as well as rhetorical or philosophical arguments, by both sides, with the Einsteinian theory winning out in the long-run. Again, the weighing of evidence and importance of new data was fit through the human sieve: some scientists found the simplicity of Einstein's equations to be most compelling, while some found them more complicated than the notion of Maxwell's aether which they banished. Some found Eddington's photographs of light bending around the sun to be compelling, some questioned their accuracy and meaning. Sometimes the convincing force is just time itself and the human toll it takes, Kuhn said, using a quote from Max Planck: "a new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it."
After a given discipline has changed from one paradigm to another, this is called, in Kuhn's terminology, a scientific revolution or a paradigm shift. It is often this final conclusion, the result of the long process, that is meant when the term paradigm shift is used colloquially: simply the (often radical) change of worldview, without reference to the specificities of Kuhn's historical argument."
Sorry to be so technical, but I thought it was important to describe the impact CCSVI is having on the perception of MS. To look at this, from a scientific perspective.
The impact we are having by using social media is unmeasurable. A "shift" of thinking has begun, and it's now gone global. People like Joan Beal and Ashton Embry have pointed to the future. TV shows like W5 with Avis and the elusive Elizabeth, have educated the world.
The view of MS will never be the same now. We have all seen the truth. We have also seen so many fight this, call it a hoax, and dredge up the same garbage arguments over and over. We have seen the "hold-outs" grasp on to their old theory, trying to stop time from marching towards the future.
Simply put, CCSVI is a glorious Paradigm > Shift in the world of MS.
WaYnE
From Wikipedia:
http://en.wikipedia.org/wi
Thomas Samuel July 18 1922 – June 17 1996) was an American physicist who wrote extensively on the history of science and developed several important notions in the sociology and philosophy of science.
Max Planck (April 23 1858 – October 4 1947) was a German physicist. He is considered to be the founder of the quantum theory, and thus one of the most important physicists of the twentieth century. Planck was awarded the Nobel Prize in Physics in 1918."
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Ultrasound anxiety for MS patient
*MS as Vascular Disease, très beau dossier à voir!!!, excellente argumentation et imagerie médicale
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*26-07-2010, SCLEROSI MULTIPLA: LA CAUSA POTREBBE ESSERE UN'OSTRUZIONE DELLE GIUGOLARI
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*Access to treatment for multiple sclerosis must be based on
science, not hope
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*CCSVI Symposium in Brooklyn Open to Public
***Ivana Malikovic : A symposium on the "vascular theory of MS"
Organized by Dr. Sal Sclafani, the symposium was attended by many of the heavy hitters in the world of CCSVI, including Dr. Tariq Sinan of Kuwait, Dr. Ivo Petrov of Bulgaria, Dr. Gary Siskin of Albany, New York, Dr. Fabrizio Salvi of Italy, Dr. David Hubbard of San Diego, California, Dr. Mark Haacke of Detroit, Michigan, and, of course, Dr. Sclafani himself.
The afternoon presentations included talks by Dr. Sinan, Dr. Petrov, and Dr. Siskin. All three physicians have been doing CCSVI procedures by the dozens, and between them account for over 400 "liberation procedures". They each related what they've learned treating patients for CCSVI, including case histories and some of the techniques they developed as their knowledge base and experience has grown.
The one overarching theme that seemed to encompass all that was said is that we are at the very beginning of our understanding of the proper techniques and procedures used to treat the condition known as Chronic Cerebrospinal Venous Insufficiency. There is much more that is not known than is known, and the point was made several times that even for very experienced interventional radiologists, the treatment of CCSVI is a whole new ballgame, requiring brand new skills, techniques, and expertise. The treatment of CCSVI is definitely still a work in progress.
Though all three of the physicians whose presentations I watched agreed that there is strong correlation between MS and CCSVI (which is becoming more and more to seem like a given), there was much polite disagreement over the best methods and techniques used to treat the condition. The physicians differed in their opinions of the size of the balloons used during balloon angioplasty procedures, precisely which areas and degrees of stenosis warranted treatment, and the safety and efficacy of the use of stents.
Dr. Sinan, who is leading the Kuwaiti effort to treat as many of their MS patients with the liberation procedure as possible, has made significant use of balloons much larger than those used by other physicians, and has forgone the use of stents (due in large part to the orders of his government). He did state that aggressive balloon angioplasty procedures largely negated the need for the use of stents, and was quite adamant that treating valves in the lower part of internal jugular veins cleared up most of the problems seen higher up in those same veins. The other two presenting physicians were more open to the use of stents, but only after balloon angioplasty had failed repeatedly to open narrowed areas of the veins in question. The general consensus seemed to be that the use of stents should be considered a last resort, but that their safety and efficacy profiles appeared to be well within acceptable parameters.
One physician in the audience did caution that stents placed in the veins of dialysis patients (who, up until CCSVI came on the scene, were the patient population that most often received venous stents) had a patency rate of only 50% after one year, meaning that half of the stents failed within one year of implantation. Since the treatment of CCSVI is such a new endeavor, not enough time has elapsed to allow us to properly assess the durability of stents placed in the jugular and/or azygos veins. Certainly, it would seem that stents designed specifically for venous use need to be developed.
Dr. Petrov and Dr. Siskin were both more open to directly treating stenosis seen higher up in the jugular veins then was Dr. Sinan, who, as I mentioned before, is of the belief that treating lower stenosis had the effect of clearing up most of the abnormalities found higher up in the jugulars. Dr. Zamboni, the originator of the CCSVI hypothesis, also believes that treating stenosis lower in the veins very often negates the need to address higher stenosis.
All three doctors noted very low complication rates despite their different approaches and techniques, and also noted a fairly wide range in the effectiveness of the procedure from patient to patient. Dr. Siskin made a very strong case for managing the expectations of patients, who, although they may be very educated and logically understand that the CCSVI procedure will not likely "cure" their MS, can't help but hope for a miracle cure, given the insidious nature of Multiple Sclerosis. Dr. Siskin displayed a slide that clearly showed that one third of the patients he treated experienced very significant symptom improvements (most often involving cognitive, heat sensitivity, and balance and coordination issues), one third experienced slight improvement, and another third experienced no improvement whatsoever. The doctors did note that treatment efficacy didn't appear to be dramatically better or worse across the different "flavors" of MS (RRMS, SPMS, PPMS), although one of the doctors (in all honesty, I can't remember which one) did say that he saw some very good results in SPMS patients.
I was struck by how often the interventional radiologists doing the presentations referred to the fact that treating CCSVI was unlike almost anything they had undertaken before, and that there was quite a steep learning curve in "getting it right". Patients need to be wary of doctors jumping on the CCSVI bandwagon without the necessary experience to properly perform the procedures required. Dr. Siskin commented that he thought treating CCSVI would be a relative piece of cake, given his wealth of experience treating blocked arteries, which in reality makes up the bulk of the work that almost every interventional radiologist does. He was very surprised at the challenges presented by treating the veins associated with the central nervous system, and emphatically made this point during his presentation.
In summary, the symposium was a fascinating glimpse into the evolution of a treatment protocol that is in its infancy, and really raised more questions than it answered. The value of the knowledge being passed from physician to physician during the symposium was immeasurable, and I'm sure each left the meeting with far more understanding about CCSVI and its treatment than they had at the beginning of the day.
Unfortunately, although there were neurologists in the audience, the neurologic aspects and implications of the CCSVI hypothesis were not really touched upon; instead the technical aspects of treatment by interventional radiologists was the subject that ruled the day. No surprise, really, since the symposium was organized by an interventional radiologist, IR's were doing the presentations. Two very good neurologists that work with my neuro were in attendance, and I'm anxious to hear their take on the proceedings. I think it's vital that the interventional radiology and neurology communities come together to fully explore the implications of CCSVI, not only for the betterment of science, but more importantly, for the betterment of patients so desperately need of effective treatment.
***http://www.wheelchairkamikaze.com/2010/07/report-on-726-ccsvi-symposium.html
Tuesday, July 27, 2010
Image via Wikipedia
First and foremost, I'd like to thank everybody who sent get well wishes via the the blog and e-mail during my recent illness. They were all deeply appreciated, and helped keep my spirits up when the going got tough. Since I want to report today on some timely CCSVI news, I'll report fully on my getting sick and subsequent hospital stay later in the week, but for now, suffice it to say that Multiple Sclerosis sucks. Big time.
Before I begin on the main topic of today's post, which is a report on a CCSVI symposium that was held on Monday, I'd like to direct everyone's attention to CCSVI.org (click here), the Internet home of the CCSVI Alliance, a nonprofit advocacy organization dedicated to educating patients with research-based information, providing tools for patients to advocate for themselves, and supporting medical professionals' exploration of Chronic Cerebrospinal Venous Insufficiency (CCSVI). I'm proud to be on the patient advisory board of the CCSVI Alliance, and hope to be very active in helping them in whatever way I can. And now, on to the primary topic of today's post...
A symposium on the "vascular theory of MS" (these days known far and wide as CCSVI) was held Monday 7/26 at SUNY Downstate Hospital in Brooklyn. Organized by Dr. Sal Sclafani, who did my attempted liberation procedure back in March, the symposium was attended by many of the heavy hitters in the world of CCSVI, including Dr. Tariq Sinan of Kuwait, Dr. Ivo Petrov of Bulgaria, Dr. Gary Siskin of Albany, New York, Dr. Fabrizio Salvi of Italy, Dr. David Hubbard of San Diego, California, Dr. Mark Haacke of Detroit, Michigan, and, of course, Dr. Sclafani himself.
Because of my recent health issues, my stamina is a bit low these days, so I missed the morning sessions, which dealt primarily with an overview of CCSVI and some of the imaging techniques used to identify the condition in patients non-invasively. I did attend the afternoon presentations, though, which included talks by Dr. Sinan, Dr. Petrov, and Dr. Siskin. All three physicians have been doing CCSVI procedures by the dozens, and between them account for over 400 "liberation procedures". They each related what they've learned treating patients for CCSVI, including case histories and some of the techniques they developed as their knowledge base and experience has grown.
Rather than give a blow-by-blow account of each presentation, I'll relate some of the general themes that emerged, and the pertinent "take away" points that were made by both the presenting doctors and the physicians in the audience. The one overarching theme that seemed to encompass all that was said is that we are at the very beginning of our understanding of the proper techniques and procedures used to treat the condition known as Chronic Cerebrospinal Venous Insufficiency. There is much more that is not known than is known, and the point was made several times that even for very experienced interventional radiologists, the treatment of CCSVI is a whole new ballgame, requiring brand new skills, techniques, and expertise. The treatment of CCSVI is definitely still a work in progress.
Though all three of the physicians whose presentations I watched agreed that there is strong correlation between MS and CCSVI (which is becoming more and more to seem like a given), there was much polite disagreement over the best methods and techniques used to treat the condition. The physicians differed in their opinions of the size of the balloons used during balloon angioplasty procedures, precisely which areas and degrees of stenosis warranted treatment, and the safety and efficacy of the use of stents.
Dr. Sinan, who is leading the Kuwaiti effort to treat as many of their MS patients with the liberation procedure as possible, has made significant use of balloons much larger than those used by other physicians, and has forgone the use of stents (due in large part to the orders of his government). He did state that aggressive balloon angioplasty procedures largely negated the need for the use of stents, and was quite adamant that treating valves in the lower part of internal jugular veins cleared up most of the problems seen higher up in those same veins. The other two presenting physicians were more open to the use of stents, but only after balloon angioplasty had failed repeatedly to open narrowed areas of the veins in question. The general consensus seemed to be that the use of stents should be considered a last resort, but that their safety and efficacy profiles appeared to be well within acceptable parameters.
One physician in the audience did caution that stents placed in the veins of dialysis patients (who, up until CCSVI came on the scene, were the patient population that most often received venous stents) had a patency rate of only 50% after one year, meaning that half of the stents failed within one year of implantation. Since the treatment of CCSVI is such a new endeavor, not enough time has elapsed to allow us to properly assess the durability of stents placed in the jugular and/or azygos veins. Certainly, it would seem that stents designed specifically for venous use need to be developed.
Dr. Petrov and Dr. Siskin were both more open to directly treating stenosis seen higher up in the jugular veins then was Dr. Sinan, who, as I mentioned before, is of the belief that treating lower stenosis had the effect of clearing up most of the abnormalities found higher up in the jugulars. Dr. Zamboni, the originator of the CCSVI hypothesis, also believes that treating stenosis lower in the veins very often negates the need to address higher stenosis.
All three doctors noted very low complication rates despite their different approaches and techniques, and also noted a fairly wide range in the effectiveness of the procedure from patient to patient. Dr. Siskin made a very strong case for managing the expectations of patients, who, although they may be very educated and logically understand that the CCSVI procedure will not likely "cure" their MS, can't help but hope for a miracle cure, given the insidious nature of Multiple Sclerosis. Dr. Siskin displayed a slide that clearly showed that one third of the patients he treated experienced very significant symptom improvements (most often involving cognitive, heat sensitivity, and balance and coordination issues), one third experienced slight improvement, and another third experienced no improvement whatsoever. The doctors did note that treatment efficacy didn't appear to be dramatically better or worse across the different "flavors" of MS (RRMS, SPMS, PPMS), although one of the doctors (in all honesty, I can't remember which one) did say that he saw some very good results in SPMS patients.
I was struck by how often the interventional radiologists doing the presentations referred to the fact that treating CCSVI was unlike almost anything they had undertaken before, and that there was quite a steep learning curve in "getting it right". Patients need to be wary of doctors jumping on the CCSVI bandwagon without the necessary experience to properly perform the procedures required. Dr. Siskin commented that he thought treating CCSVI would be a relative piece of cake, given his wealth of experience treating blocked arteries, which in reality makes up the bulk of the work that almost every interventional radiologist does. He was very surprised at the challenges presented by treating the veins associated with the central nervous system, and emphatically made this point during his presentation.
In summary, the symposium was a fascinating glimpse into the evolution of a treatment protocol that is in its infancy, and really raised more questions than it answered. The value of the knowledge being passed from physician to physician during the symposium was immeasurable, and I'm sure each left the meeting with far more understanding about CCSVI and its treatment than they had at the beginning of the day.
Unfortunately, although there were neurologists in the audience, the neurologic aspects and implications of the CCSVI hypothesis were not really touched upon; instead the technical aspects of treatment by interventional radiologists was the subject that ruled the day. No surprise, really, since the symposium was organized by an interventional radiologist, and IR's were doing the presentations. Two very good neurologists that work with my neuro were in attendance, and I'm anxious to hear their take on the proceedings. I think it's vital that the interventional radiology and neurology communities come together to fully explore the implications of CCSVI, not only for the betterment of science, but more importantly, for the betterment of patients so desperately in need of effective treatment.
Thanks again for all of the well wishes sent my way during my recent hospitalization and recovery. I'll get into the details of all that happened in my next post, so I'm sure you'll all be waiting with bated breath for my next entry, a tingle with anticipation. Here's a little teaser: my hospital roommate was a homeless man, who, despite his initial distrust and belligerence, and my miserable condition, I managed to become good friends with. We're all in this thing together, folks, and the only way out is through...
PS-Happy 70th birthday to my mom, the original kamikaze…
*****Symposium de Brooklyn lundi: 21 vidéos ici: http://s112.photobucket.com/albums/n167/girlgeek33/CCSVI%20Symposium/