IVCC, CCSVI, articles, liens et échos de murs de ce mardi.

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liberation UK

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my journey with ms

and the ccsvi procedure

I’m Ian Willison, and I’ve suffered from Multiple Sclerosis for nearly four years. An innovative and radical procedure has made a profound impact on my life, and now I want to share my experience in order to publicise this extraordinary new technique that helped me manage this debilitating illness.

 

My Story

“I am working in conjunction with one of the country’s top vascular surgeons, as I believe we shouldn’t have to expend time, energy and funds to visit medical clinics outside the UK.”
But first, let me tell you a little bit about myself. After my diagnosis, I was devastated. It’s a horrific situation exacerbated by the fact that common medical advice holds that little can be done to alleviate the symptoms. Unfortunately, the current available medicine (when tested in clinical trials) had only a 20 percent success rate and throught with it a laundry list of unpalatable side effects, so it wasn't an option for me. Further research led me to try LDN (Lower Dose Naltrexone), which I’ve been taking for three years. It has no known side effects and helped a little, but only as a temporary measure.

 

My symptoms, unfortunately, gradually grew worse. I experienced tingling in my hands, cold legs, feet and arms, and my ability to walk was now affected, too, as my right leg began to drag. I also suffered what I can only describe as “brain fog”, which accounted for memory loss and a decrease in my ability to concentrate.

 

My Discovery

In February 2010, as I endured yet another relapse, I discovered CCSVI (Chronic Cerebo-Spinal Venus Insufficiency) when reading a study carried out by Professor Paulo Zamboni of Italy. According to the MS Resource Centre, CCSVI is described as a problem where blood from the brain and spine has trouble getting back to the heart. Dr Zamboni’s studies show that the majority of MS patients experience a narrowing or blockage in their jugular veins, which may be responsible for iron deposits on the brain.

 

The Procedure

To me, this made perfect sense, as all of my aforementioned symptoms felt more like circulation problems than anything else. The surgery, called “The Liberation Procedure”, involves identifying problematic veins and using balloon angioplasty to open up those veins and, where appropriate, insert stents into non-responding sections.

 

I was desperate and willing to try anything at this point, because I could feel life as I knew it slowing slipping from my cold and tingly grasp. Unfortunately, the surgery is not yet available in the UK, so a few months later in April, I travelled to Poland to go through with The Liberation Procedure.

 

The Outcome

My results were life-changing. I fully understand that each patient and their diagnosis can vary wildly, so I can only speak from personal experience: three months on, although I am not back to my pre-diagnosis condition, my “brain fog” has disappeared, and thankfully I no longer feel like a zombie. The temperature in my feet and legs has returned to normal and while the tingling in my arms has abated, it has not fully dissipated. My mobility is noticeably better, although it’s still weak and unsteady, and my bladder and bowels have improved.

 

The Future of the Liberation Procedure

As a result of my surgery and the testimonies on the ThisIsMS website from people who’ve also had this procedure, I am convinced this ground-breaking surgery is a huge breakthrough for MS and should be offered to patients across the UK. Time is one luxury we can’t afford however, as studies have shown the sooner this procedure is carried out after diagnosis, the better the results will be.

 

As a testament to my commitment, I am working in conjunction with one of the top vascular surgeons in the UK, as well as securing premises in Cardiff in one of the city’s finest private health clinics. I believe we shouldn’t have to expend time, energy and funds to visit medical clinics outside the UK.

 

Time is one luxury we can’t afford however, and I believe the sooner this procedure is carried out after diagnosis, the better the results will be."

* CCSVI Information Session - Vancouver 

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David Vrs The MS Society

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Medical tourism becoming popular as Canadians seek health help abroad


Click to Enlarge
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GREG AGNEW/TIMES & TRANSCRIPT
Anne Laven takes a drive on Broadview Street on her scooter. She has multiple sclerosis and is heading to New York for controversial treatment where doctors perform angioplasty to neck veins to MS patients' symptoms.

*Le programme intégral d'Electrims!

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ECTRIMS 2010-- CCSVI presentations

par CCSVI in Multiple Sclerosis, lundi 11 octobre 2010, à 01:41

 For those who are not familiar with this yearly gathering, ECTRIMS stands for European Committe for Treatment and Research in Multiple Sclerosis.  This year the conference in being held in Sweden, and it takes place later this week.   This conference is the big deal in MS research, and is well-attended by neurologists

 

In past years, Dr. Zamboni was allowed to present a poster for display on his research of CCSVI in MS and iron deposition in MS brains, as it related to chronic venous disease.   He has never been invited to speak before.  Dr. Zamboni will be presenting his research along with Dr. Zivadinov  in the Main Auditorium as part of the Charcot Foundation presentation, as they go up against Dr. Omar Khan, co-author of the first negative opinion piece in the Annals of Neurology:  To say that this is a big deal is an understatement.  I've included the schedule of presentations for you all below:

http://www.congrex.ch/ectrims2010/welcome/welcome.html

 

Wednesday, October 13, 2010 12:35 - 12:45 European Charcot Foundation Chronic cerebrospinal venous Insufficiency. Relation to multiple sclerosis? (Main Auditorium) 

 

CCSVI: from hypothesis to reality P. Zamboni (Ferrara, IT) 

 

12:45 - 13:00 European Charcot Foundation Chronic cerebrospinal venous Insufficiency. Relation to multiple sclerosis? (Main Auditorium) CCSVI: relation to multiple sclerosis R. Zivadinov (Buffalo, US) 

 

13:15 - 13:30 European Charcot Foundation Chronic cerebrospinal venous Insufficiency. Relation to multiple sclerosis? (Main Auditorium) Questions on CCSVI in multiple sclerosis O. Kahn (Detroit, US) 

 

On Thursday, Dr. Zivadinov is presenting results from the BNAC MRI studies -

 

Thursday, October 14, 2010 15:30 - 17:00 Imaging 1 MRI results of blinded chronic cerebrospinal venous insufficiency study in patients with multiple sclerosis, healthy controls and patients with other neurologic diseases P 318 

 

R. Zivadinov, G. Cutter, K. Marr, M. Ramanathan, R.H.B. Benedict, M. Elfadil, N. Bergsland, C. Morgan, E. Carl, D. Hojnacki, E. Yeh, L. Willis, M. Cherneva, S. Hussein, J. Durfee, C. Kennedy, M. Dwyer, B. Weinstock-Guttman (Buffalo, Birmingham, US) 

 

Also being presented is the genetics research now completed at BNAC  

 

15:30 - 17:00 Genetics/transcriptomics 1 Associations of HLA DR*1501 status and chronic cerebrospinal venous insufficiency in multiple sclerosis P 265 

 

B. Weinstock-Guttman, R. Zivadinov, G. Cutter, M. Tamano-Blanco, D. Badgett , K. Marr, E. Carl, M. Elfadil, C. Kennedy, M. Ramanathan (Buffalo, Birmingham, US) 

 

Dr. Zamboni presents results from his endovascular treatment study-

 

15:30 - 17:00 Therapy disease-modifying - Others 1 Endovascular treatment for chronic cerebrospinal venous insufficiency in multiple sclerosis. A longitudinal pilot study P 508 

 

P. Zamboni, R. Galeotti, B. Weinstock-Guttman, G. Cutter, E. Menegatti, A.M. Malagoni, D. Hojnacki, M. Dwyer, N. Bergsland, M. Hiennen-Brown, A. Salter, C. Kennedy, I. Bartolomei, F. Salvi, R. Zamboni (Ferrara, IT; Buffalo, Birmingham, US; Bologna, IT) 

 

On Friday, a negative study is being presented by another Italian team who found no CCSVI in CIS patients.

 

Friday, October 15, 2010 09:45 - 10:00 Platform presentation of selected abstracts I (Congress Hall) No evidence of chronic cerebrospinal venous insufficiency in clinically isolated syndrome suggestive of multiple sclerosis 81 

 

C. Baracchini, P. Perini, M. Calabrese, F. Causin, F. Farina, F. Rinaldi, P. Gallo (Padua, IT) 

 

Then Dr. Zivadinov will present on how the visibility of lower brain vasculature ties into CCSVI severity as shown by MRI

 

10:00 - 10:15 Platform presentation of selected abstracts I (Congress Hall) Presence and severity of chronic cerebrospinal venous insufficiency is related to lower brain parenchyma venous vasculature visibility on susceptibility-weighted imaging in patients with multiple sclerosis 82 

 

R. Zivadinov, G. Poloni, C. Schirda, C. Magnano, E. Carl, N. Bergsland, D. Hojnacki, C. Kennedy, F. Parker, M. Dwyer, B. Weinstock-Guttman (Buffalo, US) 

 

Dr. Simka's research on endovascular treatment of CCSVI will be presented

 

15:30 - 17:00 Therapy disease-modifying - Others 2 Safety and complications related to endovascular treatment for chronic cerebrospinal venous insufficiency in multiple sclerosis patients P 914 

 

M. Simka, T. Ludyga, M. Kazibudzki, M. Hartel, M. Swierad, J. Piegza, P. Latacz, L. Sedlak, M. Tochowicz (Katowice, Zabrze, PL) 

 

Dr. Zivadinov's research on utilizing MRV to visualize the jugular veins after angioplasty-

 

15:30 - 17:00 Imaging 2 Use of magnetic resonance venography for visualisation of the internal jugular veins in patients with multiple sclerosis diagnosed with chronic cerebrospinal venous insufficiency and treated with percutaneous angioplasty P 773 

 

A. Lopez-Soriano, R. Zivadinov, R. Galeotti, D. Hojnacki, E. Menegatti, C. Schirda, A.M. Malagoni, K. Marr, C. Kennedy, I. Bartolomei, C. Magnano, F. Salvi, B. Weinstock-Guttman, P. Zamboni (Buffalo, US; Bologna, IT) 15:30 - 17:00 Clinical assessment tools 2 

 

BNAC's correlation of CCSVI to MS

 

Clinical correlates of chronic cerebrospinal venous insufficiency in multiple sclerosis P 653 

 

B. Weinstock-Guttman, G. Cutter, K. Marr, D. Hojnacki, M. Ramanathan, R.H.B. Benedict, C. Morgan, E.A. Yeh, E. Carl, C. Kennedy, J. Reuther, C. Brooks, M. Elfadil, M. Andrews, R. Zivadinov (Buffalo, Birmingham, US) 

 

Dr. Simka's correlation of severity of CCSVI with severity of MS

 

15:30 - 17:00 MS symptoms 2 Correlation of localisation and severity of extracranial venous lesions with clinical status of multiple sclerosis P 641 

 

M. Simka, T. Ludyga, M. Kazibudzki, A. Adamczyk-Ludyga, J. Wrobel, P. Latacz, J. Piegza, M. Swierad (Katowice, PL) 

 

A Beirut study that says CCSVI does not cause MS

 

15:30 - 17:00 Pathology 2 Chronic cerebrospinal venous insufficiency is an unlikely cause of multiple sclerosis P 663 

 

B. Yamout, A. Herlopian, Z. Issa, R.H. Habib, A. Fawaz, J. Salameh, H. Wadih, H. Awdeh, N. Muallem, R. Raad, A. Al-Kutoubi (Beirut, LB) 

 

Dr. Zivadinov's study showing increase of iron in gray matter of MS/CCSVI

 

15:30 - 17:00 Imaging 2 Multiple sclerosis patients with chronic cerebrospinal venous insufficiency present with increased iron concentration on susceptibility-weighted imaging in deep-grey matter P 774 

 

R. Zivadinov, M. Heininen-Brown, C. Schirda, C. Magnano, D. Hojnacki, C. Kennedy, E. Carl, N. Bergsland, S. Hussein, M. Cherneva, L. Willis, M. Dwyer, B. Weinstock-Guttman (Buffalo, US) 

 

 

And finally, the German neurological doppler study where they claim they found no CCSVI, but Dr. Zamboni says their results actually PROVE CCSVI.

15:30 - 17:00 Diagnosis & differential diagnosis 2 No evidence for cerebro-cervical venous congestion in patients with multiple sclerosis P 579 

 

F. Doepp, F. Paul, J.M. Valdueza, K. Schmierer, S.J. Schreiber (Berlin, Bad Segeberg, DE; London, UK) 

 

And of course, the pharmaceutical companies will be there, presenting all their positive findings,  sponsoring lectures and discussions and hosting dinners and events.  What fun!

 


 

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A new treatment for MS

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CBC - No follow-up in Québec for Zamboni Treatment:

par CCSVI in MS Toronto, lundi 11 octobre 2010, à 03:07

Patients with multiple sclerosis who travel abroad to undergo the treatment of controversial Italian doctor Paolo Zamboni can not get medical care in Quebec. 

 

The controversial treatment from Italian doctor Paolo Zamboni for multiple sclerosis has unpleasant side effects for some patients in Quebec.

 

Radio-Canada met in the Eastern Townships of people who went to Poland to be operated and who can not get medical attention after returning to Quebec.

 

Some even have to return to Europe, as Robert Lapointe, who has had the operation last June.

 

Her doctor had prescribed an ultrasound that Quebec doctors have refused to do.

 

"I could go to Albany [Editor's note: New York State] or in Ontario, but you need a prescription from your doctor who may lose his right to practice," he says.

 

Louise Saint-Germain is in the same situation.

 

She flew to Poland two months ago for surgery, but doctors have not Quebec the right to make her an ultrasound to follow up. She and her partner were furious.

 

The neurologist Albert Lamontagne said that the interpretation of ultrasound of the jugular veins is problematic.

 

"We have no standards to read the results. We can not know whether they are good or not, "he said.

 

Moreover, Quebec and Ottawa does not recognize the treatment of Dr. Paolo Zamboni because experts are not convinced of its effectiveness.

 

According to the theory of Dr. Zamboni, blockage of veins in the neck is connected to multiple sclerosis, and release them with a small balloon or a vascular prosthesis used to treat the disease.

 

The controversy surrounding the treatment has prompted the Centre Hospitalier Universitaire de Sherbrooke (CHUS) to commission an independent study. It adds to those sponsored by the Canadian multiple sclerosis.

 

The results of the study CHUS will be announced in January.

 

With reporting by Marie-Laurence Delainey

 

 

 

 

Translated from:

http://www.radio-canada.ca/nouvelles/sante/2010/10/10/001-sclerose-plaques-suivi.shtml"

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Lettre à Mesdames et Messieurs les Députés et les Sénateurs,



Une découverte majeure dans l’approche de la sclérose en plaques encore niée par le système médical français


La sclérose en plaque (SEP) est une maladie dégénérative, évolutive et incurable du système nerveux central (cerveau, moelle épinière, nerfs optiques). En France, plus de 80.000 personnes en sont atteintes. Avec 2500 nouveaux cas par an, c’est la deuxième cause de handicap chez les jeunes adultes, après les accidents de la route.


Une découverte considérée comme remarquable à l’étranger (reconnue par l’académie de médecine en Italie depuis juin 2010 et objet d’études à grande échelle au Canada, aux Etats Unis et ailleurs) demeure ignorée des médecins français et des pouvoirs politiques en charge de la santé publique.


Cette avancée scientifique remet en cause le dogme selon lequel la SEP serait une maladie auto-immune.
Ces observations permettent de poser l’hypothèse que
la sclérose en plaques pourrait être liée à des anomalies du système veineux.


Ces anomalies, identifiées par le Professeur Zamboni sont regroupées sous le terme d’ "insuffisance veineuse cérébrospinale chronique" (IVCC ou CCSVI en anglais).


Des sténoses veineuses fragiliseraient la barrière hémato-encéphalique, provoquant des dépôts de fer et l’arrivée des lymphocytes qui attaquent un des composants essentiels des neurones : la myéline.


Une des solutions thérapeutiques consisterait donc à rétablir un débit veineux normal.


L’examen préalable qui consiste à vérifier le débit sanguin dans les veines jugulaires irrigant le cerveau via un écho-doppler est indolore, non invasif, rapide et surtout peu onéreux. Si les études en cours dans d’autres pays le confirment, l’angioplastie pourrait être une des solutions à la SEP, beaucoup plus économique pour la Sécurité Sociale que les traitements lourds, coûteux et peu efficaces prescrits actuellement. Ce qui l’on s’en doute pose problème à l’industrie pharmaceutique.


Les malades français partent à l’étranger


De nombreux malades français, devant l’aggravation irrémédiable de leurs symptômes et l’immobilisme du monde médical français, ont, d’ores et déjà, choisi de se faire traiter à l’étranger (Belgique, Allemagne, Angleterre, Pologne, Bulgarie).
Aux Etats-Unis, plusieurs cliniques proposent déjà ce traitement.


Les témoignages des personnes ayant subi une angioplastie aboutissent souvent aux mêmes constats: amélioration générale de la qualité de vie, augmentation de la capacité respiratoire, diminution radicale de la fatigabilité, résolution spectaculaire des problèmes urinaires. Certaines vidéos montrent même des gens se levant progressivement de leur fauteuil roulant.


Ces interventions, de l’ordre de 5000 à 6000 Euros, sont à la charge des malades français. Ce « tourisme médical » ne permet pas un suivi rigoureux des évolutions post-opératoires.


A l’étranger, plus particulièrement en Italie et au Canada, le débat est aujourd’hui sur la place publique pour le déroulement, le financement et surtout les types d’études
cliniques à mettre en place.


Si les résultats des études hors de nos frontières confirment l’hypothèse du Pr Zamboni, et que la France persiste dans sa décision de ne rien initier, ce sont 80 000 français qui risquent un jour de se retourner contre les pouvoirs publics.


Des citoyens qui seraient en droit d’exiger un dédommagement pour le préjudice subi, car le temps qui passe aggrave dramatiquement la santé des malades, un nouveau scandale en perspective…


Pour un débat et des études en France


Il est donc urgent que le débat avance et que des études cliniques sérieuses sur la
relation entre l’insuffisance veineuse cérébrospinale chronique et la sclérose en plaques démarrent rapidement en France.


Nous en appelons donc à une intervention vigoureuse de votre part pour faire entendre la voix des malades atteints de Sclérose en Plaque : pour le respect de leurs droits, de leur sens des responsabilités, et de leur liberté de choix concernant leur santé.


En vous remerciant par avance de tout ce que vous voudrez bien faire pour aider tous ces patients en détresse, nous vous prions de croire, Mesdames et Messieurs les Sénateurs, Mesdames et Messieurs les Députés à l'expression de notre haute considération.



Un collectif de malades atteints de Sclérose en Plaques



NB : lettre diffusée en octobre 2010"

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Testimonial: everyone with MS should have the procedure

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Hubbard Foundation CCSVI Registry

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SammyJo’s CCSVI 9 Month Update

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UAB School of Medicine beginning study for treatment of CCSVI--Alabama

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CCSVI - St Bonifatius Hospital, Prescan - So glad I'm liberated!!

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First trial of embryonic stem cells in humans

stem cell There are hopes that stem cell therapy can be used to tackle many diseases

 

*A lire!!!

  Echo de mur:*Sarah Rainbolt  ‎"Rania continues to improve! Yes with time and physical therapy we can continue to heal!"
One month after procedure [HD]

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