Des liens pour aider autrui.

BIENVENUE !

.


Elue du conseil départemental
de l'APF 67. Je milite pour l'APF:
groupe ACCESS et ECOLE
(on sensibilise en collège
et en lycée au handicap
et à la maladie!.
Je fais partie du
groupe "éthique" aussi.Mes idées
politiques ne sont pas celles
de l'association qui est neutre!



ambassadejeunesse


  READ HERE!LESEN SIE HIER!


 










 




 



REVENIR A L'ACCUEIL




Recommander

Syndication

  • Flux RSS des articles

Rechercher

overblog

CCSVI/IVCC Zamboni théorie veineuse

Jeudi 29 juillet 4 29 /07 /Juil 10:00

Barre de traduction google indispensable!

Je commencerais par un article qui veut attaquer la ccsvi, vous savez que je ne censure rien, publié hier par l'assoce US SEP qui ne consacre que très peu de ses dons à la recherche et qui existe grâve aux labos!!!

"Doc calls costly therapy ‘robbery’

MULTIPLE SCLEROSIS

Clinics charging multiple sclerosis patients thousands of dollars for an unproven treatment are basically stealing, an internationally recognized stroke researcher and Robarts Research Institute scientist said Monday.

“That is robbery. . . . It is quackery because nobody knows yet if it works,” said Dr. David Spence, director of the Stroke Prevention and Atherosclerosis Research Centre in London.

News reports that Italian doctor Paolo Zamboni last year discovered a treatment for MS that involved unblocking veins have sparked intense interest from people with the disease.

Proponents say the procedure can reduce, and even eliminate, the damage from MS.

Clinics offering the controversial angioplasty procedure have sprung up in Mexico, India, Kuwait, Bulgaria and other countries.

In Canada, the procedure hasn’t been approved and patients have to pay the bills themselves, some as high as $20,000, if they opt for foreign treatment.

Several MS patients from London have said they will have the procedure after seeing media reports and watching YouTube videos showing patients getting out of wheelchairs and walking up stairs.

“It is a procedure that should only be done experimentally for now because it is based on an unproven theory,” Spence said.

“For sure we would all love it to be true, it would be great to have a new treatment for multiple sclerosis, but there are a whole bunch of problems.”

One of the problems with the theory that multiple sclerosis is connected to blocked veins is that narrowed veins in the brain can cause strokes. But the part of the brain affected by strokes is not the same part affected by MS, Spence said.

In addition, many MS lesions are found in the spinal cord, not in the brain, so the narrowing of veins in the brain is not going to cause those lesions, he said.

“The theory is implausible because it doesn’t bear any relationship to what we already know about these things,” he said. “Everything we know about MS so far indicates it is an inflammatory condition.”

Spence likened the current rush of patients to seek the foreign treatment with laetrile, an extract from almonds that was touted as a cancer cure but was later discredited.

As for the testimonials from patients who reported dramatic improvements after the procedure, Spence said many people, including some doctors, don’t understand the placebo effect.

“It is very real, very powerful.”

Spence cited a study of the placebo effect at the University of Western Ontario in which medical students were given dummy pills and told they were being given a heart medication. Tests on the students recorded some had nausea, vomiting and high blood pressure. Some fainted, and some had low blood pressure.

“They recorded definite physical abnormalities from taking this placebo tablet because they had expectations it would have some affect on their cardiovascular system,” Spence said.

“You cannot study a new therapy without assigning a certain proportion of participants in a study to a control, a proper double-blinded control where the patient doesn’t know what treatment he or she is receiving and the person evaluating the response doesn’t know what treatment the patient is receiving,” Spence said.

Such a study should only take about a year, he said."

 

MS patient's plea for treatment

dave.tanner@archant.co.uk
28 July 2010
ILFRACOMBE MS sufferer Jayne Morrow and husband Dave are hoping a pioneering new treatment will help ease her condition.
ILFRACOMBE MS sufferer Jayne Morrow and husband Dave are hoping a pioneering new treatment will help ease her condition.
AN Ilfracombe mum of three with multiple sclerosis is calling for the NHS to recognise a radical new treatment which has given hope to millions of MS sufferers worldwide.

Jayne Morrow, 42, says it is unfair she will have to spend £5,500 and possibly travel overseas for the treatment she believes could ease her condition.

And there would be many others who could not raise the money, she said.

"The health service in this country will not recognise it," said Jayne, who until she was diagnosed three years ago, was a successful fitness instructor and personal trainer in North Devon.

"People with this debilitating illness should not have to wait years for the wheels of medical bureaucracy to turn, by which time they could be unable to move or speak."

The disease causes extreme fatigue, numbness, loss of muscle coordination, plus problems with vision and speech.

Jayne says sufferers should have the right to choose a new "liberation treatment" pioneered by Italian doctor Paolo Zamboni, who last year announced MS was caused by blockages to veins which connect to the brain, resulting in damage and not a problem with the immune system as previously thought.

Using a straightforward angioplasty procedure to open up veins he claimed to have stopped the symptoms of his wife's MS and had similar success with dozens of patients.

The internet is now abuzz with success stories, but if anyone wants the treatment they have to travel abroad to Eastern Europe or Asia and Jayne believes the NHS should be doing more to make it available here.

She is booked for a CCSVI scan at a clinic in Glasgow in September. If it proves positive the operation will cost a further £5,000, but she does not know where that might be carried out.

"Blocked veins are a recognised condition here in the UK, but as soon as you mention MS everyone runs," she said.

"I agree trials should take place, but expecting us to wait 10 years for the results is wrong. We have a progressive illness and they should treat us and trial us at the same time. In fact, it is against our human rights not to."

She has also begun taking a new drug for MS known as LDN, which she pays for herself and has given up the NHS treatment of expensive beta interferon drugs, which she says costs the NHS £50 million a year.

Both Jayne and her husband Dave say they are disappointed at the lack of information the NHS has given them on options that might be available.

"Because Jayne's MS has been quite stable I think they felt she was getting the best treatment she could and we just had to get on with it," said Dave.

"Because of her fatigue it was a struggle for us just to go out down to the park with our youngest and that would make her very upset."

The condition described by Dr Zamboni is known as "chronic cerebro-spinal venous insufficiency" (CCSVI.) Some preliminary studies are being prepared in Canada and the US but it is unknown when or if the procedure will be available here.

Jayne concluded: "I speak for those people who can't talk, walk and are bed ridden. I am disgusted and very hurt from the attitudes we've had from the people that should be helping us."

A spokesman for NHS Devon said in regard to the LDN drug: "It is too early at the moment and more research needs to be done around it before NHS Devon looks at commissioning the drug."

An MS Society spokeswoman said of the new treatments: "The MS Society shares people's enthusiasm for what could be a positive breakthrough in MS treatment and we want the best outcome for people with MS. At the moment, there is not enough evidence to show that either CCSVI or LDN treatment is effective and as such more research is needed and welcomed."

Put MS surgery on clinical trial: Sask. premier

Last Updated: Wednesday, July 28, 2010 | 12:37 AM ET

Saskatchewan Premier Brad Wall says the province is ready to help pay for clinical trials of the so-called liberation treatment for multiple sclerosis sufferers.Saskatchewan Premier Brad Wall says the province is ready to help pay for clinical trials of the so-called liberation treatment for multiple sclerosis sufferers. (Jeff McIntosh/Canadian Press)

Saskatchewan is ready to help pay for clinical trials of the so-called liberation treatment for multiple sclerosis sufferers, despite a lack of scientific evidence that it might work, says Premier Brad Wall.

"There isn't unanimity on the issue, I understand that," Wall said Tuesday. "But we also know anecdotally and otherwise, frankly, of reasons for some optimism and some hope about the liberation treatment, so maybe it is time for clinical trials and … the Province of Saskatchewan is willing to play a funding role."

The treatment is based on an unproven theory — put forward by Italian doctor Paolo Zamboni — that blocked veins in the neck or spinal cord are to blame for MS. Clinics in Poland, Bulgaria and India are opening blockages for patients who have flocked from Canada and other countries in the last few months.

Some patients have posted testimonials on websites, in chat rooms and in YouTube videos, saying the procedure has reduced their symptoms. That has created political pressure to have the treatment provided in Canada.

Saskatchewan has the highest rate of multiple sclerosis among provinces, with an estimated 3,500 residents affected by it.

"There isn't anybody who doesn't have a family member or friend who is battling it," Wall said.

Many medical experts are urging caution. Dr. Paul Hébert, a critical-care physician and editor-in-chief of the Canadian Medical Association Journal, has said that manipulating veins can be dangerous and there is no established link between venous blockages and MS.

"To date, the published evidence is limited to a case series of 65 patients," Hébert wrote in a recent edition of the journal.

He and others believe important questions must be answered before clinical trials on humans can begin:

  • Do people with MS really have higher rates of venous blockages?
  • Are those blockages a cause of or a result of the disease?
  • Can veins be dilated or opened safely?

For Wall, clinical trials are the way to go. His government is inviting proposals from the scientific community and expects to get them shortly.

"We want to be a leader in at least exploring every possible source of hope for those who are battling MS."


Read more: http://www.cbc.ca/health/story/2010/07/27/multiple-sclerosis-wall-ccsvi-liberation.html#ixzz0v3EaAeoY

 

 *Ontario won't yet fund studies on new MS treatment

*

CCSVI – Different Approaches, Different Techniques---Canada Diagnostic Vancouver Bulletins

*

went to family doctor today à lire!!!

*

No causality has been claimed!


 


Par Handi@dy - Publié dans : CCSVI/IVCC Zamboni théorie veineuse - Communauté : SEP(sclérose en plaques)HANDI
Ecrire un commentaire - Voir les 0 commentaires
Jeudi 29 juillet 4 29 /07 /Juil 10:00

La barre de traduction google est votre meilleur atout!

Photos du symposium pour commencer, de l'album de Denise Graff! Je retranscris le texte de la diapo pour que vous puissiez laisser gogle traduire!

ccsvi-brook-diapo1.jpg

by Dr Paolo Zamboni of Italy.
He stated:
"The similarity between such lesions and many of those seen in cases of multiple sclerosis in man is so striking that the conclusion appears almost inevitable that venular obstruction is the essential immediate antecedent to the formation of typical sclerotic plaques.

ccsvi-brook-diapo-2.jpg

Looking forward

°Creation of multidisciplinary teams in each MS center

°Research protocols

Therapeutic multitask

°Spy story in MS world


*Un méchant coup de pied au c.. du salaud qui a menti sur le forum de la Fondation arSEP (nom pompeux, rien derrière) en mentant sur l'état de santé post OP de Denise Manley: elle est super active sur facebook tous les jours, quand elle ne voyage pas, ici chez des amis, elle au premier plan en bas, on voit qu'elle agonise!!! Non seulement le forum arSEP ment aux SEPiens (la fondation vit et existe grâce aux dons des labos! Demain je vous fais un spécial labos pharma français, vous allez halluciner!), mais en plus une amie chercheuse s'y est fait traiter comme une merde et exclure!!! A boycotter, cette assoce de merdum qui refuse la recherche ccsvi et le seul traitement qui fonctionne à ses patients!!!

ccsvi-denise-manley-visit.jpg


*MS patient Duncan Thornton talks about his improved quality of life after travelling to Poland for an unproven treatment known as the liberation therapy or CCSVI

un médecin SEPien opéré CCSVI témoigne en vidéo:

http://www.cbc.ca/video/#/News/ID=1553961970



Une chanson dédiée aux SEPiens, Body's in trouble, le corps a des problèmes...

 

*Les vidéos du symposium CCSVI de Brooklyn:
 
Kathleen Lynch, amie face opérée dont j'ai déjà publié des échos de mur et des vidéos.
  Suite des vidéos du symposium demain et les jours suivants, sinon ma page de blog sera trop lourde et trop longue à charger!

*Echos de murs!
Le premier est capital!!!

Ken Torbert Denise manley's New List--Our doctors are out and claiming CCSVI to be treatable!

Doctors Willing to Treat Now!!!!!!!!!!!

ccsvi-ms.ning.com
The venous hypothesis Chronic cerebro-spinal venous insufficiency (CCSVI) is advocated by researcher Paolo Zamboni for Multiple Sclerosis
 Tessa Rushton  Taking the rest of this week & next as vacation days to assist with the recovery. Why did the whole thing have to turn into a sh*t show before this was brought to the table? argh! oh well...
 Tessa Rushton  found an airport car service from Pierson to Barrie... perhaps a follow up with Dr. Sandy MacDonald is something I can do in January :)

*

Tessa Rushton Taking the rest of this week & next as vacation days to assist with the recovery. Why did the whole thing have to turn into a sh*t show before this was brought to the table? argh! oh well...

Tessa Rushton More good news! My massage therapist noticed the spasticity in my shoulders has eased a lot :)


 
Par Handi@dy - Publié dans : CCSVI/IVCC Zamboni théorie veineuse - Communauté : SEP(sclérose en plaques)HANDI
Ecrire un commentaire - Voir les 0 commentaires
Mercredi 28 juillet 3 28 /07 /Juil 10:00

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

*

 

'Unless you have MS, you don't know. You can't know'

Woman ready to try unproven procedure to repel disease

Posted By Grant LaFleche, St. Catharines Standard

Posted 1 day ago
   

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

Italian doctor Paolo Zamboni made world news with his experimental treatment for MS, which immediately prompted calls for studies.

Premier puts province at forefront of Canadian efforts to introduce a treatment that has experts – and those with MS – divided

*

Fairview fundraiser to help woman with Multiple Sclerosis

*

Saskatchewan premier calls for clinical trials of controversial MS treatment

*


"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 ki/Paradigm_shift

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."

*

Woman ‘conservatively hopeful’ of MS procedure

*

MS Activists: Furthering ADA Compliance In Their Communities

*

Ultrasound anxiety for MS patient

 *MS as Vascular Disease, très beau dossier à voir!!!, excellente argumentation et imagerie médicale

*

Taking REAL LEGAL ACTION towards Liberation for all

*

Cardiology Department, Tokuda Hospital Sofia

 *26-07-2010, SCLEROSI MULTIPLA: LA CAUSA POTREBBE ESSERE UN'OSTRUZIONE DELLE GIUGOLARI

*

In the chair - Tony Kennan of the MS Society

*

Simple Surgical Cure for Multiple Sclerosis Opposed by Big Pharma

*Access to treatment for multiple sclerosis must be based on
science, not hope

*

 

Please Welcome CCSVI Alliance’s New Website: CCSVI.org

*

Trip worth every penny, says mom

*

MS patients not served

*

Massagen gegen depressive Symptome

*CCSVI Symposium in Brooklyn Open to Public

***Ivana Malikovic : A symposium on the "vascular theory of MS"

A symposium on the "vascular theory of MS"

A symposium was held Monday 7/26 at SUNY Downstate Hospital in Brooklyn.
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

Report on the 7/26 CCSVI Symposium

MRI image of a patient with CCSVI. Diagnosis: ...

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/

 

 


Par Handi@dy - Publié dans : CCSVI/IVCC Zamboni théorie veineuse - Communauté : SEP(sclérose en plaques)HANDI
Ecrire un commentaire - Voir les 0 commentaires
Mercredi 28 juillet 3 28 /07 /Juil 10:00

ccsvi-italie.jpg La barre google de traduction est ton outil de compréhension (pour les vidéos, je titre ou résume)

*****Symposium de Brooklyn lundi: 21 vidéos ici: http://s112.photobucket.com/albums/n167/girlgeek33/CCSVI%20Symposium/

 

*Première vidéo du symposium CCSVI à Brooklyn, une des figures connues de la CCSVI, le Dr Sclafani, qui en a fait l'ouverture!  

http://www.facebook.com/video/video.php?v=432462143768&ref=mf  

Je vous mets les coms qui sont postés sous la vidéo:


Vous, Andrea Pittman Casti, Carol Schumacher, Zhenya Stolyar et 32 autres personnes aimez ça.
#

    *
      Waheed Yousef What a smart and intelligent man
      Il y a 16 heures · J’aimeJe n’aime plus ·
    *
      Diana Gordon That whole opening speech by Dr. Sclafani was so impressive. I was captivated, just watching it on video. A committee dedicated to cerebrovascular diseases... HOW EXCITING!!!
      Il y a 16 heures · J’aimeJe n’aime plus · 3 personnes3 personnes aiment ça. ·
    *
      April Barrett Morton I hope this spreads as fast as celebrity gossip!
      Il y a 16 heures · J’aimeJe n’aime plus ·
    *
      Kevane Bona Stronge ‎*sigh* : ) i love all these doctors with my whole heart and soul : )
      Il y a 16 heures · J’aimeJe n’aime plus ·
    *
      Diana Gordon They are our superstars!!
      Il y a 16 heures · J’aimeJe n’aime plus · 4 personnesKevane Bona Stronge et 3 autres personnes aiment ça. ·
    *
      Dawn Lazelli Terrific. Can't wait for the rest!
      Il y a 16 heures · J’aimeJe n’aime plus · 1 personneLisa Saladino Cooper aime ça. ·
    *
      Jill Nolan How fortunate we are that Dr Sclafani and all the other wonderful doctors are working for us !
      Il y a 14 heures · J’aimeJe n’aime plus ·
    *
      Angela Cleary It was a wonderful experience and I am so happy to have been able to meet so many friends!
      I spent most of my time with Dr. Salvi and Ilaria :)
      It was great to meet you in person, Denise. Thank you SO MUCH for the videos!
      Il y a 14 heures · J’aimeJe n’aime plus ·
    *
      John R Robinson Thank you Denise... Great work - I really appreciate your efforts... TY, TY, TY :-) Wish I could have been there to personally thank everybody.. Can't wait to see the rest of the videos...
      Il y a 13 heures · J’aimeJe n’aime plus ·
    *
      Jessina Bereznak Sclafani rocks!!! thanks so much for posting!
      Il y a 13 heures · J’aimeJe n’aime plus · 1 personneChargement... ·
    *
      Linda Joy Feese Thank you Denise, Thank you Dr. Sclafani & all that participated out of the goodness of their hearts to help us.
      Il y a 13 heures · J’aimeJe n’aime plus · 3 personnesAndrea Pittman Casti et 2 autres personnes aiment ça. ·
    *
      Kim Schoon Denise, thank you for video taping for those of us who could not attend. It's so nice to get to see and hear Dr. Sclafani! He is a true champion for our cause!
      Il y a 12 heures · J’aimeJe n’aime plus ·
    *
      Andrea Pittman Casti I love hearing how all these people came together for our cause for free. It's nice to know that there are doctors who actually care!
      Il y a 11 heures · J’aimeJe n’aime plus ·
    *
      John R Robinson ‎^^^ ditto Andrea ^^^
      Il y a 11 heures · J’aimeJe n’aime plus ·
    *
      Dianna Newbury Thanks Denise for video taping this.
      Il y a 9 heures · J’aimeJe n’aime plus ·
    *
      Michelle Firestone Brown Thank you Denise for sitting there all day and holding you camera so still. This is great.
      Il y a 5 heures · J’aimeJe n’aime plus ·

Une vidéo mise à jour d'un SEPien dont j'ai déjà publié deux vidéos, Bernard. 

http://www.facebook.com/video/video.php?v=118191794893969&ref=nf

 

Dégénérescence nerveuse dans la moëlle épinière: 

Une jolie vidéo qui nous rappelle, SEP ou pas, de ne pas nous comparer à autrui, d'être nous-même et de NOUS accepter.
Jayne nous demande de ne pas trop attendre de l'OP, de ne pas avoir d'attente trop précise (on en a tous après les vidéos des opérés), car chaque cas est différent. Elle nous propose de cultiver l'ESPOIR.
A VOIR!!! Tina Marie Veach a participé ou proposé la vidéo suivante, une sorte d'histoire accélérée de la SEP, des premiers cas recensés, des célébrités US concernées, des médecins impliquée depuis le début.
En passant par la phase maladie neurologique, traitements inefficaces et dangereux, pour arriver à Zamboni (chanson "Get the power back", reprendre le pouvoir) avec le succès immédiat de son OP, l'info qui fait le tour du monde, les milliers d'opérés prévus en 2010, les figures de proue de la CCSVI, des photos des OP, elle cite une Libérée, puis fait un résumé de ses symptômes (surtout les douleurs qui ne partent pas) et cite le montant énorme de dons de la société US SEP, le peu d'argent (17 pour cent) consacré à la recherche, demande pourquoi la presse ne couvre pas davantage, rappelle que les premières études confirment la théorie de Zamboni, espère son OP pour 2011, institue le 5 mai comme journée de prise de conscience internationale CCSVI! Magnifique vidéo!
Première version de la vidéo précédente:
La vidéo post OP de Linda Foucher, mon amie facebook comme Tina Marie Veach. J'ai publié il y a quelques temps l'article presse qui signalait le départ de Linda pour se faire opérer. Voilà le résultat:
*Echos de murs:

Brenda Deblois  bon Mr..Louis Adam vient juste de me téléphonner :)) super gentil vraiment !! même si je n'ait pas encore recu le traitement !!! il à prit en considération tout ce qu je lui ait dit et il ma écouter et ses commentaires sont sur ca sont très bon ..il garde en note mon nom,numéro de té: etc... pour que je le tienne au co...urant de mes démarches après avoir recu le traitement ...et     *
      Vous, Amelie Boissinot et 3 autres personnes aimez ça.
    *
          o
            Brenda Deblois qu'il va faire de son mieux pour nous aider à avoir un suivi ??? dossiers à suivre !!!!! on verras !!
            Il y a 16 heures · J’aimeJe n’aime plus
          o
            Francine Bigras Super ça Brenda!
            Il y a 15 heures · J’aimeJe n’aime plus
          o
            Brenda Deblois oui !! et pour te dire franchement je ne m'attendait pas à recevoir son appel ...j'en ait été toute surprise ...et je conseil à toute et à tous de faire comme moi appeller le ..plus il va y avoir d'appel le mieux ca va etre pour nous et peut-etre faire bouger les choses plus vite pour nous ...ALORS À VOS TÉTÉPHONNES GO.GO.GO. si il ma appeller et bien je suis presque sur qu'il retourne tout ces appel ...!!!!!!!!
            Il y a 15 heures · J’aimeJe n’aime plus · 2 personnesChargement...
          o
            Brenda Deblois merci Danielle :))))) je suis contente de ton appui :)) ♥♥♥
            Il y a 15 heures · J’aimeJe n’aime plus
          o
            Brenda Deblois merci aussi Adrienne :))
            Il y a 15 heures · J’aimeJe n’aime plus
          o
            Adrienne Rieckert ‎:))
            Il y a 15 heures · J’aimeJe n’aime plus · 1 personneBrenda Deblois aime ça. ·
          o
            Rhind Khoury El-mir quelle a ete le motif initial de ton coup de fil avec lui
            Il y a 13 heures · J’aimeJe n’aime plus
          o
            Brenda Deblois la secrétaire ma juste demander si elle voulait que je soit transfèrer sur sa boite vocale pour lui laisser un message vue qu'il était déja sur le téléphonne .. alors comme message je lui ait juste dit mon nom mon numéro de téléphonne et que je voulait lui parler de la sclérose en plauqes et c'est tout ce que j'avait laisser comme message et 15 minutes plus tard il me téléphonnait ....
            Il y a 12 heures · J’aimeJe n’aime plus
    * Rédiger un commentaire...


 Brenda Deblois  non mais c'est la meilleur . les boissons énergisante inquiète la communauté médical ?? pis nous qui avons la SP. ca les inquiète pas ca ?? ont à de la misère à avoir un suivi après le traitement ??? j'espère que les jeunes qui consomment de ces boissons n'auront pas la SP ??? parce que la communauté médicale ne seras plus inquiète pour leur santé !!!!

Tessa Rushton
Massage tomorrow - ooooh my aching back! all that sitting & lying down is killer!
Bed time :)

Sonia Arsenault
Aujourd'hui assis sur un lit, ma physio me pousse à droite, à gauche, par en avant et en arrière mais il n'y a aucun moyen de me faire tomber. MON ÉQUILIBRE EST BONNE. avant une pichnotte me fesait tombé sur le côté...
#
Vous, France Lévesque, Patricia Couturier, Vivianne White et 36 autres personnes aimez ça.
#

    *
      Nabelle La Sclérosée Déjantée ça met son temps mais ça fonctionne du tonnerre !
      je suis heureuse pour toi Sonia, sincèrement !
      bisous
      Il y a 13 heures · J’aimeJe n’aime plus
    *
      Marie-Josée Lebrasseur wow c'est super, je suis contente pour toi, bon cheminement et continue tes efforts!!!!
      Il y a 13 heures · J’aimeJe n’aime plus
    *
      Lucille Ferlatte Continu ma belle on est avec toi...
      Il y a 13 heures · J’aimeJe n’aime plus
    *
      Marilou Levasseur YÉ !!!!!!!!
      Il y a 13 heures · J’aimeJe n’aime plus
    *
      Brenda Deblois wow !!! super :))
      Il y a 13 heures · J’aimeJe n’aime plus
    *
      Cindy Arbour J'suis tellement contente pour toi! Profite pleinement de chaque victoire!
      Il y a 13 heures · J’aimeJe n’aime plus
    *
      Nadine Bernard SUPER! on continue!!!
      Il y a 12 heures · J’aimeJe n’aime plus
    *
      Adrienne Rieckert Génialissime! ^^ :))
      Il y a 12 heures · J’aimeJe n’aime plus ·
    *
      Lucie Piette Yes! Sonia ça va super bien continue!
      Il y a 11 heures · J’aimeJe n’aime plus
    *
      Sylvie Audet Et ça continue!! Bravo!
      Il y a 11 heures · J’aimeJe n’aime plus
    *
      Caroline Henry yesser té sur la bonne voie!!
      Il y a 11 heures · J’aimeJe n’aime plus
    *
      Asmaa Mrabet bravo bravo et ca va continuer courage je suis tres contente pour toi sonia.
      Il y a 10 heures · J’aimeJe n’aime plus
    *
      Pascal Henry Lache pas !!!!
      Il y a 9 heures · J’aimeJe n’aime plus
    *
      Anne Savage wow !!! tellement encouragent lâche pas Sonia !!
      Il y a 8 heures · J’aimeJe n’aime plus
    *
      France Lévesque C'est vraiment super Sonia, je suis vraiment heureuse pour toi.
      Il y a 8 heures · J’aimeJe n’aime plus
    *
      Jacinthe Aubut tres contente pour toi ,cé vraiment extraordinaire wow ,continue
      Il y a 8 heures · J’aimeJe n’aime plus
    *
      Rose-Marie Poirier la prochaine fois surprend la et pousse la lolll
      Farce à part, bravo :)
      Il y a 8 heures · J’aimeJe n’aime plus
    *
      Nicole Lamy c est bon ça Rose-Marie hihi
      Il y a 7 heures · J’aimeJe n’aime plus
    *
      Francine Deshaies ♥ Trop hot!!!:))))))))))))))
      Il y a 6 heures · J’aimeJe n’aime plus
    *
      Rachelle Arsenault wow wow wow!!!
      que dire de plus ,chu super contente pour toi...
      bisous
      Il y a 6 heures · J’aimeJe n’aime plus
    *
      Maryse Robichaud je suis tres contente pour toi . bravo.. ses cools
      Il y a 5 heures · J’aimeJe n’aime plus
    *
      Line Barriault C'est incroyable..... quoi dire de plus..!!!!
      Il y a 5 heures · J’aimeJe n’aime plus
    *
      Roxanne Mc Murray Hooooo la la Sonia! Une autre bonne nouvelle, que c'est encourageant!
      Ne lâche pas!!!
      Il y a 5 heures · J’aimeJe n’aime plus
    *
      Johanne Boulay Je me demande qui va gagner la gagure, toi ou Léa ! :P
      Bravo So... un jour à la fois ma belle ! xx
      Il y a 4 heures · J’aimeJe n’aime plus

# Rédiger un commentaire...

 Sandra Whitaker  feeling much more positive today and largely due to my new found friends that have been treated & continue to battle for us all or have heard & now just awaiting their turn:-)

Sandra Whitaker
is thinking "history is finally in the making" we are gonna be top of the news tonight people Canada was mean't to be a leader in this not a follower, sometimes it pays to nag & harass...lol:-)
#
Vous, Patrick Farrell et 4 autres personnes aimez ça.
#

    *
      Chloe Emm LOL. We've proven good at that. :-). Awesome news! Saskatchewan ROCKS!!!!
      Il y a 10 heures · J’aimeJe n’aime plus · 1 personneChargement...
    *
      Sandra Whitaker I've always believed my country would make me proud again & we'll see how long it takes the stragglers & we won't give up until they do...lol!
      Il y a 10 heures · J’aimeJe n’aime plus
    *
      Shirley Renshaw AND many thanks to YOU Sandra with the gift of writing :)
      Il y a 10 heures · J’aimeJe n’aime plus
    *
      Sandra Whitaker We've all done our bit Shirley united we stood and still are I'm just over the moon that they are finally starting to listen & they will get it right we don't tend to do things half-assed...lol!
      Il y a 10 heures · J’aimeJe n’aime plus · 1 personneChargement...
    *
      Chloe Emm Maybe this will change the agenda of the meeting in BC next month?
      Il y a 10 heures · J’aimeJe n’aime plus · 2 personnesChargement...
    *
      Shirley Renshaw Wouldn't that be something Chloe :)
      Il y a 10 heures · J’aimeJe n’aime plus
    *
      Chloe Emm We'll have to "help" them to change their agenda, I should say. Tee hee.
      Il y a 9 heures · J’aimeJe n’aime plus · 2 personnesChargement...
    *
      Sandra Whitaker We'll tell them follow the leader just like when we were told in elementary school!!
      Il y a 9 heures · J’aimeJe n’aime plus · 1 personneChargement...

# Rédiger un commentaire...


Par Handi@dy - Publié dans : CCSVI/IVCC Zamboni théorie veineuse - Communauté : SEP(sclérose en plaques)HANDI
Ecrire un commentaire - Voir les 1 commentaires
Mardi 27 juillet 2 27 /07 /Juil 10:00

La barre google de traduction est ta meilleure amie ici!

New surgery offers hope

Cora Ward of Point Leamington will travel to Poland in October to receive a controversial new treatment for multiple sclerosis (MS). David Newell photo

Cora Ward of Point Leamington will travel to Poland in October to receive a controversial new treatment for multiple sclerosis (MS). David Newell photo

David Newell
Published on July 26th, 2010
Published on July 26th, 2010

Community rallies as resident prepares for controversial treatment

Cora Ward wants to walk without the use of canes or a walker. Six months ago, that would’ve been a tall order for the 50-year-old Point Leamington woman, who has had multiple sclerosis (MS) for the past 33 years.

Topics :
MS Society of Canada , Bank of Montreal , Point Leamington , Poland , Europe

Cora Ward wants to walk without the use of canes or a walker.

Six months ago, that would’ve been a tall order for the 50-year-old Point Leamington woman, who has had multiple sclerosis (MS) for the past 33 years.

But a controversial new surgery has given her new hope to combat the effects of the degenerative nerve disease.

“If I can have something like that I want it,” she said. “A lot of years I have been going like this.”

The new technique, developed by Italian researcher Dr. Paolo Zamboni, came to light in late 2009.

“It is because of prayer that I can still walk. I can still get around, but it is getting hard. If I don’t do it now I will always wonder.” - Cora Ward

His studies of chronic cerebrospinal venous insufficiency (CCSVI) determined that the symptoms of MS could be alleviated. According to the MS Society of Canada, the condition involves “a hypothetical disruption of blood flow in which the venous system is not able to efficiently move blood from the central nervous system, resulting in increased pressure in the veins of the brain and spinal cords, which in turn results in damage to these areas.”

 

*Blog!

*Articles et news de CCSVI collector!

* CCSVI in MS Toronto : Christopher: An open letter to Dr. Turner at McGill University

lettre ouverte d'un opéré à un médecin en fac:

"Christopher Alkenbrack Interview with Susan Gaskin-Fusco
CBC – DAY BREAK
Friday, July 23rd, 2010

Dr. Joel Turner, from McGill University wrote :

THIS IS A COMPLETE TRANSCRIPTION OF YOUR COMMENT THAT WAS READ LIVE ON THE AIR AFTER MRS. GASKIN`S INTERVIEW

« I was listening with horror at the misinformation that you and your patient were sharing with listeners. Her comment that her foot numbness got better with this experimental vein procedure has no anatomical merit. To begin with, the jugular veins are responsible for returning blood from the brain, not providing blood to the legs. Furthermore, her statement that as long as her jugular veins were blocked that iron deposits continue to accumulate in her brain, also has no physiologic merit. I empathize with this patient, but I think she has been brainwashed into believing this experimental procedure. Any vascular problem that your patient was referring to is referring to arterial occlusions, not veins. Patients suffering from heart attack, stroke, numbness in the legs are caused by arterial blockages which is very well recognized, therefore treatable, not veins. The doctor from Collège des médecins did indeed answer your question. There is no evidence that your patient needs this follow-up duplex of her veins. She is being told that she does based on non-scientific data. Please before you bring on a patient who has heard of others getting this test, get your facts straight. You are providing a serious disservice to your listeners. »


Dr. Joel Turner
PROGRAMME DIRECTOR
McGill Emergency Medicine Residency Program Office
Royal Victoria Hospital
joel.turner@xxxxxxx.xx


RE : INTERVIEW ON CBC DAYBREAK WITH SUSAN GASKIN-FUSCO
Friday, July 23, 2010


Dr. Turner,

With all do respect, I`ll be answering your opinion letter that you so confidently wrote that was read on the air of CBC radio morning in the recent interview with Mrs. Susan Gaskin-Fusco of Montreal.

I too « listened in horror » as yours was the last impression that was given to a wider public, undermining the treatment that Mrs. Gaskin Fusco received in Poland. You too, Dr. Turner, are responsible for giving misinformation to the public, as are many of the doctors and neurologists in close association with the Multiple Sclerosis Society of Canada. If the MS Society had been forthcoming and truthful with the information that they provided to the MS population, this conflict would not exist. They are the ones partially responsible for creating this canyon-like divide between the patients that they represent through the withholding of information and the misinformation that they are quoting in public forums. Though this is new territory for everyone, the MS Society of Canada, can no longer be a credible source of information as they so proudly proclaim on their website in various places.

There are enough testimonials now, from medical personnel, as to the amazing improvements that are being seen following an angioplasty on a patient with MS. Dr. Zamboni has been treating MS patients who also have Chronic Cerebrospinal Venous Insufficiency since 2006. In the beginning stages of treating MS patients, he met an Irish Heart Surgeon by the name of Dr. Gianfranco Campalani. I`m sending you links where you can find out about this surgeon, his work and what he has to say about the unblocking of blocked veins in patients with MS.

http://heartsurgery.cqc.or g.uk/Surgeon.aspx?ID=GMC25 57470&UnitID=RVB&Unit=Depa rtment+of+Cardiac+Surgery% 2C+Royal+Hospitals+Trust&OT=1

Dr. Campalani is a surgeon and a professor in the Department of Cardiac Surgery, Belfast Ireland. He has had many interesting points to make about angioplasty being performed on MS patients, as he has multiple sclerosis himself. In an interview with BBC, he provides a testimonial of what this « procedure » did for him, and how it improved his quality of life.

http://news.bbc.co.uk/2/hi/health/8510437.stm

After having this procedure to unblock his blocked veins, Dr. Campalani states, ”Five hours after the procedure I got up and I walked the corridor without my stick.” He goes on to state further in the article, “In the subsequent days and weeks I see that other functions which were not working 100%, they work.”

Yet you state in your comment on CBC radio, that “Her (Susan Gaskin-Fusco) comment that her foot numbness got better with this experimental vein procedure has no anatomical merit. » I find it interesting that one of Britian`s leading heart surgeons explains the wonders of improved quality of life, is able to better walk, and has improvement in other areas affected by his MS, yet you so confidently state that these improvements have no anatomical merit. Do you base this on your preconceived ideas as a medical doctor ? If so, you are confidently implying that you know everything about every area of science ! Who`s right here ? You or Dr. Gianfranco Campalani, a surgeon who has performed hundreds of heart surguries in his lifetime ? The end of Dr. Campalani`s story, for your information, is that he restenosed three years later, and started to have more symptoms of MS. In fact, he had to have a second angioplasty to unblock his veins one more time, and guess what ? His MS symptoms improved ! I would challenge you to think outside the box, and admit to yourself that you and your medical team at McGill University do not have all of the answers. In fact, if you did have all of the answers, and medical research was no longer necessary, then there would no longer be medical research taking place, would there ? If we possessed all of the answers to life`s unanswered questions, then we would either close all of the research facilities worldwide, or we would be God himself !

Another story that has come to the forefront in the Canadian media is that of Steve Garvie, a man from Barrie, Ontario. Mr. Garvie underwent this simple procedure in a private clinic, and his quality of life has vastly improved. He went from living in an assisted unit in Barrie, requiring nursing aid daily, living life in a wheelchair, to walking with one cane. It is my understanding that Mr. Garvie is even able to work now. Mr. Garvie had secondary progressive MS, and now feels like he has set back his disease clock by several years. He has regained physical function not because he was on an immunomodulatory therapy for MS, but because he had a simple, « exceedingly safe » procedure performed in January of this year – a procedure that anyone else in Canada can have – unless they are branded with the MS label. Mr. Garvie made a speech to the Parliamentary Subcommittee on Neurological Disease which I encourage you to look up and listen to with interest.

Futhermore, there are doctors worldwide now looking into the links with blocked veins and how it affects the progression of Multiple Sclerosis. I do not say that « We have arrived »; I think more that the tip of the iceberg has been exposed, and that further research is needed to look into these areas and discover the links. Please see the writings of Dr. Salvatore Sclafani, Professor and Chairman of Radiology and Professor of Surgery and Emergency Medicine, State University of New York Downstate Medical Center in Brooklyn, New York.

http://bmctoday.net/evtoday/pdfs/et0710_Feature_Sclafani.pdf.

Another paper that I found interesting, was published by Dr. Ruth Ann Marrie, Assistant Professor, Department of Internal Medicine (Neurology), University of Manitoba in a recent publication entitled “Vascular comorbidity is associated with more rapid disability progression in multiple sclerosis.

http://www.ncbi.nlm.nih.gov/pubmed/20350978

Isn`t it interesting that the MS Society of Canada and neurologists across this great country are the first to deny the possibility that CCSVI may be connected to Multiple Sclerosis, and then we have doctors, who are associated with the same organization, publishing papers on venous problems, and the fact that they actually may accelerate the disease process and cause greater levels of disability in people with Multiple Sclerosis ?

It is the narrow-minded attitude of the medical community, and the protectionism and unwillingness to work together that impedes further progress into the areas of many domains of scientific research. Rather than « beating up » on doctors who do not think like you, you try to discredit them, and this causes a greater divide in the scientific community. There is more than one way to solve a problem, and it is when we bring together the strengths that each researcher can provide that we will discover the answers to the questions that we all are so desperately seeking. Seeking control of members of your Colleges through communications that are meant to instil fear of retribution, is the equivalent of the mind-control games that we find in the behaviours of cult leaders. Why are you not allowing doctors to think for themselves ?


You also state in your opinion letter, that « Any vascular problem that your patient was referring to is referring to arterial occlusions, not veins. Patients suffering from heart attack, stroke, numbness in the legs are caused by arterial blockages which is very well recognized, therefore treatable, not veins. » It is interesting that you talk about numbness in the legs as being caused by arterial blockages. As an MS patient, I can confirm that I have had numbness in my legs, hands, trunk, etc., and I am not aware that I have arterial blockages. Almost every patient with MS that I know has had numbness – from minor to severe – and none of us have ever heard of having arterial blockages as the root cause for the MS numbness. If there is something that you know about MS numbness that we do not know about, please inform us. Maybe this is an area of research that needs to be looked into by the MS Society of Canada ?!? You stated that numbness in MS patients is treatable when dealing with arterial blockages.

Doctors from all areas of medicine, even neurologists, are coming on board with CCSVI theory. There are dozens of interventional radiologists and vascular surgeons who are starting to delve into this new area of research. They are taking the lead and looking into the links despite the « foot-dragging » of the Canadian medical community. As a human being, I can understand your hesitancy to embrace new ideas before they are proven to be correct, but to negate something before it has been disproven is just as bad. Dr. Sandy MacDonald, a vascular surgeon from Barrie, Ontario, has taken on this cause. He admits to knowing nothing about Multiple Sclerosis, but he can detect venous flow problems in patients with MS, and fix these problems. Dr. Christopher Guest, an interventional radiologist in Barrie, Ontario, says that this is an « exceedingly safe procedure ». However, the « fear » that is being instilled in doctors across this country by their respective colleges, is unprecedented. I have personally spoken with several people whose doctors fully support them in getting this treatment – but of course, these conversations are all « off the record » as we are told. Are they so controlled by their respective Colleges that they are not allowed to speak their real opinions ? Once again, this is a cult-like behaviour that one would expect in closed groups where one person or a group of persons have the ultimate control over the actions of all others.

I met a Canadian doctor in Poland on the morning of May 17th. He suffered from MS, and was in Poland for the intervention himself. Three weeks prior to that, there was a Canadian neurologist there with a family member to have the jugular and azygous veins angioplastied. I find it interesting that on one hand, the medical community is so against this, yet there are members of the same College of Physicians that seek treatment outside the confines of double-blinded clinical studies. And to be told by a doctor that « None of this will mean anything outside the confines of a double-blinded study » really does not sway people from seeking this very simple, non life-threatning procedure.

Furthermore, some medical experts believe that double-blind studies are not always necessary. Dr. Gianfranco Campalani, the Irish Heart Surgeon, has been quoted as saying, « “I believe that when a new treatment has practically only minor possible complications (as reported by Zamboni with venogram and angioplasty) and a good potential for benefits, as opposed to the pharmachological treatment rich in harmful side-effects, the need for rigorous scientific double-blind trials is nonsense. We need a few more intelligent and courageous vascular surgeons and radiologists to start treating vascular anomalies (strictures of the jugular veins) on their own merit, not mentioning MS. But the medical establishment is notorius for being conservative and generally lazy.” Yet the rhetoric that we are hearing is that this vein procedure is dangerous – simply not true.

As for the question of follow-up dopplers, the secretary of the Collège des médecins du Québec, stated that this was not necessary. In the case of Dr. Gianfranco Campalani, we learned that his veins had renarrowed, and he needed another angioplasty. Why is it that when recommendations are made from a doctor outside the province of Québec, that this is automatically deemed « non scientific » ? As a doctor yourself, the challenge with the increase of medical research is obviously keeping up-to-date on all medical advances. Your close-minded attitude, and that of the Collège des médecins du Québec, is creating a larger territorial divide between the medical community and patients. Quotes like, « This is a hoax » or the verbal abuse of which many MS patients have been victims of, have created this backlash from patients, and caused the beginning of this conflict.

Do not forget that the MS Society of Canada, and its American counterpart published warnings on their websites the Monday morning following the airing of the W5 presentation on « The Liberation Procedure ». Within a period of 12 hours, the Canadian MS Society website was updated, saying that they were opening new studies and offering grants to study the link between CCSVI and MS. The American MS Society followed suit, but only weeks later. Yet, even the eminent Canadian neurologist, Dr. Jock T. Murray, who has written several books on Multiple Sclerosis, freely admitted that they have always suspected a venous link to Multiple Sclerosis. In fact, he talks about this in his book Multiple Sclerosis : The History of a Disease. Dr. Murray suggested in a recent radio interview that they have always suspected a venous connection with MS. So is this really « out of the box » thinking, or is it a case of the medical community claiming territorial rights to ground-breaking research ?

As an MS patient myself, I can not wait, and will not wait for the medical community to battle this one out. We are not only seeing polarization with the patient-doctor community, the relationships between doctors themselves are threatened, as some embrace this new hypothesis, and others naysay it. I see from your comment to CBC, that you are in the latter community. As I hear stories of people visiting their family doctors, I am amazed at the fact that many will not take a stand for something that they believe in. Responses to the patients are based on the fear of being reprimanded by their college. Yet others are helping us « under the radar » as we seek diagnosis and treatment for CCSVI. This is the reality that we as MS patients are living.

Sincerely and respectfully submitted,

Christopher Alkenbrack



CCSVI / IVCC Group:
http://www.facebook.com/group.php?gid=110317832313822"


*Hubbard Foundation - San Diego (où les Américains se font diagnostiquer CCSVI et opérer)


As stated by Devin Hubbard:

"2,500 pre and post angio scan
7,500 for treatment without insurance.
Stents will be used if vein does not stay open
Stent is MRI safe, "

"we run the haacke protocol MRV, no doppler. If we find a patient positive for CCSVI we found a local hospital to do the venogram, balloon angio, and stents if balloon doesn't work. Our 4 patients have not needed stents yes, but I'm sure there will come a time. "

http://hubbardfoundation.org/index.html

*Un peu d'art!

Art and the brain

Kate Kellaway admires an exhibition of artworks exploring the experience of neurological damage

  • Kate Kellaway byline pic
Brain Boxes & Boundless Books Brain Boxes & Boundless Books is an exhibition of recycled book art, montage and paper sculpture. All created by patients from Homerton University Hospital. Photograph: Antonio Olmos

If you were to stumble on Brainboxes and Boundless Books at Hackney Museum in east London, the first thing that would strike you is the affinity between the artworks on display. For this dazzling, small-scale exhibition is the visual equivalent of a conversation. It has been curated by artist Shaun Caton, who runs art workshops for long-stay patients at Homerton hospital's neurological rehabilitation unit. It at one and the same time explores brain damage and seeks to transcend it. You will find almost no information about the artists themselves (patient confidentiality) – and the sense is that the art has come out of nowhere. In describing the challenges his artists were battling against, Caton lists a range of neurological conditions: Guillain-Barré syndrome, Parkinson's, strokes, brain trauma suffered in road accidents.

The show includes intimate and moving portraits as well as other ways of representing the self. Many patients have opted for making boxes which are potent metaphors for memory – receptacles filled with jewels, coral, birds, babies, a leaping dolphin. There are recycled books here too – decorated with haunting phrases (I loved the "how much longer envelope"). As I looked, it struck me that collage is the perfect art form for people suffering neurological damage because it works with the broken, reconstitutes it and makes it whole. Caton puts it like this: "The power of collage is the freedom of choice, the rebuilding of a story that may tell us something about the patients' lives. It may also reflect the fragmentary nature of their memories."

We talk also about one of the most elegant and lucid pieces on display, The Road to Recovery. The drawing of Homerton hospital looks like something out of Laurent de Brunhoff's Babar books. "It describes a maze with many ways in – but only one way out," Caton observes. But the exhibition gently disagrees. Its uplifting suggestion is that there are many ways out and through. Until 18 September, Hackney Museum, London E8"

Par Handi@dy - Publié dans : CCSVI/IVCC Zamboni théorie veineuse - Communauté : SEP(sclérose en plaques)HANDI
Ecrire un commentaire - Voir les 0 commentaires

MODE D'EMPLOI DU BLOG!

Jeux bonus cachés du blog!

CAL'HANDIS NUS, adhérez!

LAPSUS SEP!

C'EST POUR VOUS !

 


L'Evénement CapSanté
Recommandé par des Influenceurs



SIGNEZ LE LIVRE D'OR:

DES QUESTIONS?


M'ECRIRE


 

N°URGENTS:



 

envoyé par Arnaudgo0.



David Anza met son talent au service de Notre Sclérose !

 - Découvrez des webcam de personnalités du monde entier.



 



Calendrier

Juillet 2014
L M M J V S D
  1 2 3 4 5 6
7 8 9 10 11 12 13
14 15 16 17 18 19 20
21 22 23 24 25 26 27
28 29 30 31      
<< < > >>
Créer un blog gratuit sur over-blog.com - Contact - C.G.U. - Rémunération en droits d'auteur - Signaler un abus - Articles les plus commentés