IVCC/CCSVI, liens et articles de ce mardi.

Publié le par Handi@dy

"Barre google de traduction indispensable!

*" Multiple Sclerosis activity changes with the seasons, research finds 

par CCSVI in MS Toronto, mardi 31 août 2010, à 03:03

 

CORRELATION OF LOCALIZATION AND SEVERITY OF EXTRACRANIAL

VENOUS LESIONS WITH CLINICAL STATUS OF MULTIPLE SCLEROSIS

Simka M, Ludyga T, Kazibudzki M, Latacz P, Świerad M, Piegza J

 

EUROMEDIC Specialist Clinics, Department of Vascular & Endovascular Surgery, Katowice; Poland.

 

 

ABSTRACT:

 

Background. Chronic cerebrospinal venous insufficiency is suspected to play a role in pathogenesis of multiple sclerosis.

 

Objective. Assessment of the correlations between patterns of venous lesions and clinical characteristics of multiple sclerosis.

 

Methods. Localization and degree of venous blockages in multiple sclerosis 381 patients were evaluated using catheter venography. Analysis of clinical severity included: Multiple Sclerosis Impact Scale-29 (MSIS-29), chronic fatigue and heat intolerance assessment.

 

Results. Venous blockages were found in 97.1% of the patients.

 

Abnormalities were more severe in older patients. No correlation existed between duration of the disease and severity of venous pathologies. Patients with younger age at onset of multiple sclerosis presented with milder venous lesions. Significant correlations existed between severity and localization of venous lesions and clinical burden in terms of MSIS-29 and chronic fatigue scores, but not of heat intolerance.

 

Conclusion. Prevalence of chronic cerebrospinal venous insufficiency among multiple sclerosis patients is very high. Indirect data analysis indicated that venous abnormalities are probably congenital, slowly progress, but are unlikely to be caused by multiple sclerosis.

 

Their severity and localization significantly modify clinical course of this disease. However, they are not likely to directly trigger multiple sclerosis, but there may be another factor initiating the disease.

 

 

 

"Dr. Simka will present this soon to be published paper at a Frankfurt seminar in October 2010"

*"

par CCSVI in MS Toronto, mardi 31 août 2010, à 07:55

 

Rationale for the Preliminary Evidence Examination

 

A review on the effectiveness and safety of imaging investigations and treatment of chronic cerebrospinal venous insufficiency (CCSVI) in patients with multiple sclerosis (MS) was requested by the Ministry of Health and Long-Term Care. A preliminary evidence examination was made by the Medical Advisory Secretariat (MAS) in order to determine whether there was sufficient evidence to conduct a full evidence- based review on CCSVI in MS patients.

 

Recent reports in the scientific and medical community and the media have led to great interest in a novel approach in the management of multiple sclerosis.

 

 

The Medical Advisory Secretariat

Ministry of Health and Long-Term Care

20 Dundas Street West, 10th floor

Toronto, Ontario

CANADA

M5G 2C2

 

 

Email: MASinfo.moh@ontario.ca

Telephone: 416 314 1092

 

 

Medical Advisory Secretariat

Ministry of Health and Long-Term Care Report:

http://www.health.gov.on.ca/english/providers/program/mas/tech/rapid/pdf/rr_ccsvi_20100611.pdf

*"

 

par CCSVI in MS Toronto, mardi 31 août 2010, à 07:54

 

Interventional Endovascular Management of Chronic Cerebrospinal Venous Insufficiency in Patients with Multiple Sclerosis: A Position Statement by the Society of Interventional Radiology, Endorsed by the Canadian Interventional Radiology Association

 

IT has been recently hypothesized that a phenomenon known as chronic cerebrospinal venous insufficiency (CCSVI) may play a significant role in the etiology, pathogenesis, and/or disease progression of multiple sclerosis (MS) (1,2).

 

Preliminary studies suggest that anatomical and physiological abnormalities of venous blood flow are significantly more common in patients with clinical MS than in healthy control subjects or patients with other neurologic disorders (3– 6). Of particular interest has been the documentation of stenotic and occlusive lesions in the azygos and internal jugular veins on duplex ultrasound and contrast venography of patients with clinical MS. One group (1,7,8) has reported improvement in clinical outcomes including quality of life in two small prospective uncontrolled cohorts of patients with MS in whom such lesions were treated with balloon angioplasty.

 

Although additional clinical studies have not yet been published, the potential for image-guided, catheter-based procedures to evolve into a standard treatment option for MS has engendered great interest and major controversy among interventional radiologists, vascular surgeons, neurologists, patients with MS, and their advocates.

 

Report Downlaod:

http://www.sirweb.org/news/newsPDF/SIR_MSstatement_JVIR.pdf"

 

 

Source:

http://www.thisisms.com/ftopic-8585-420.html

*

MS trials not on horizon 26 August 2010 - Saskatoon StarPhoenix

*

An abstract from Dr. Simka´s paper. Not published yet!!!! by Fátima Brenner

*

"Government must review new medical treatments

Only weeks after saying it would monitor the results of a new treatment for multiple sclerosis in other provinces before jumping on board itself, New Brunswick's Department of Health now says it will support national trials for the controversial new treatment for the disease.

In recent months, the Times & Transcript has profiled two women suffering from MS who had their eye on this treatment, which is considered experimental and unproven in North America but is available at a hefty price overseas.

One woman sought out the treatment in Poland and dropped $15,000 on it. Prior to the treatment, she couldn't walk without a cane, she would tire quickly and playing basketball with her young child required sitting down on the driveway and shooting hoops from her lap.

After she returned to Moncton post-treatment, a T&T photographer captured her riding her bicycle for the first time in eight years.

Melissa Robertson said after the treatment that she quickly noticed a change in her energy level and she began walking without a cane.

Robertson touted the success of the treatment in her case, and said she hopes it is soon available in Canada.

Another Moncton woman's family and friends have been holding fundraisers so she can one day make a similar trip for the same treatment in her battle with MS. Angie Cormier told us she doesn't want to remain stuck to her red scooter to get around anymore, and figures $15,000 or so is a fair gamble if the treatment will help her out in any way.

I have to tip my hat to the provincial Department of Health for getting behind, at least in principle, this experimental treatment.

"The scope of New Brunswick's involvement would be determined through discussions with the federal government and other provinces," a spokesperson said this week.

The treatment was developed by Italian professor Paolo Zamboni. It is available at private clinics in countries such as Bulgaria, Mexico, Australia and Poland, and it works on the premise that MS is a vascular disease. It opens up constricted veins to restore blood flow throughout the body.

Already, Manitoba and Nova Scotia have announced their support of national trials, and they're hoping that federal Health Minister Leona Aglukkaq supports a national clinical trial. Saskatchewan announced it will fund its own trials.

I'm no doctor, but I can understand and appreciate why doctors are skeptical of the treatment until it is tested and proven to be of worth.

After all, they're on the frontlines when it comes to keeping us healthy and they want to be sure any treatment they offer has a good chance of success.

But as more and more Canadians seek the treatment elsewhere and there appear to be examples that it is working in some cases, I feel it is something at least worth looking at.

It's hard to say what one would do until you are in a situation yourself, but I think I would try anything available to me if I had a severely debilitating disease, one that would greatly affect my quality of life or perhaps even threaten my life.

I suspect I would do whatever my doctor told me, exhausting all possibilities, as I imagine anyone else would. But when the options dry up and conventional treatments don't work? Sign me up for whatever is left.

One should always weigh the risks first of course, but if it were a friend or family member in the situation, I would want them to do the same thing.

Doctors have labeled the treatment as unproven, and that's fine. But if there is some evidence that the treatment may yield results and Canadians are clearly showing an interest in going down that avenue, why not throw some funding and research behind it to see what happens?

I don't want the provincial or federal governments throwing their weight and possibly time or cash behind any ol' witchdoctor's tricks, but if there is a glimmer of hope and some evidence supporting success for a particular treatment for any disease, I certainly hope my province and my country would at least give a good, hard look it.

* City Views appears daily, written by various members of our staff. Eric Lewis is a reporter with the Times & Transcript. His column appears every Wednesday."

*"

Holding out hope

Perry Goodyear estimated there’s only been two days in the past two months that he hasn’t been sick.

Last Wednesday, when the Grand Bank resident spoke to The Southern Gazette, was one of them.

The 37-year-old, who was diagnosed with multiple sclerosis or MS in 2003, has watched the disease steadily progress since then.

First, his leg wouldn’t bend and he walked with a limp. Soon, he required a cane, then a walker and now a motorized scooter.

He has the Primary Progressive form of MS, which affects between 10 and 15 per cent of people with the disease.

“That’s my mobility. That’s all I got now. I got one arm that functions at about 50 per cent. I haven’t got a whole lot left.”

One thing the former mechanic, who is married with one daughter, does have though is hope.

It comes in the form a new theory by Italian researcher Dr. Paolo Zamboni, who believes MS is connected to a vascular disease he calls ‘chronic cerebrospinal venous insufficiency’, or CCSVI. He has suggested it can be treated by an angioplasty-type surgery on veins in the neck.

MS has been generally thought by many to be an autoimmune disorder, up until research in recent years.

The ‘liberation treatment’ – as it has been dubbed, though, has not been approved as an option for MS patients in Canada thus far. This has forced many people with the disease in this country to seek out the surgery elsewhere, including Poland and the United States.

Mr. Goodyear is headed to the U.S. this October for the procedure. He has been asked not to reveal where, to avoid flooding the facility with requests. He also applied to Poland earlier this year, but has not had a response.

He learned about the facility in the United States through a Facebook friend with MS in Ontario, who recently had the surgery performed there. He applied and had the October appointment lined up within a couple months.

“She’s doing marvelous. She’s hoping that she’s going to be back to work in the new year.”

It’s hard not to get excited when you hear about some of the stories of people who have had the procedure.

“It’s unreal the results. There’s one woman in Ontario, who never hugged her daughter in 16 or 18 years. Now she can stand up and give her daughter a hug without falling down.

“She’s cooked a full meal for her husband and daughter. She doesn’t get tired. No more fatigue. No more headaches.”

Mr. Goodyear acknowledged he has received tremendous support from around the Burin Peninsula.

An eight-person committee in Grand Bank has been formed to raise the estimated $20,000 to $25,000 needed to cover the surgery and associated costs. He indicated approximately $7,000 has been raised so far.

The next event is a soup and sandwich luncheon at the Grand Bank Lions Centre Sept. 11.

“I’ve been fortunate because I thought I was going to have to get a bank loan or re-mortgage the house. It’s looking pretty good now. I think they will get enough money.”

The provincial government had been hesitant to provide funding for clinical trials in this country for the treatment, up until recently.

Health Minister Jerome Kennedy acknowledged the province’s position had changed last week. He said a decision whether the surgery will be covered under MCP will be made after the trials are finished.

Interim Liberal leader Kelvin Parsons said he is encouraged government had at least made a commitment to help fund clinical trials.

“I think it is important government has acknowledged it has a role to play in furthering research on this treatment, which is viewed by many MS sufferers as a hopeful alternative to improve their quality of life.”

Several CCSVI studies are already underway or set to begin shortly in Canada, but the results will take time.

That’s something Mr. Goodyear said he doesn’t have much of left – the disease has progressed severely in the past two years.

“I know it’s not going to get no better, so I’m just hoping now that this surgery will do something. That’s all I got left.”

Given his current condition, he anticipates the journey to the United States will be a rough one, but also worth it if he can get even a piece of his life back.

“My main thing, if I can get rid of the pain and suffering, it’d be 100 per cent for me. To be able to use a bit of function in my left arm would be nice. I haven’t used it in two years. The fatigue is terrible and the headaches.

“I’m not looking to jump up and run across the floor – just a little better quality of life. If I can get that back, it would be nice. To be able to do a little bit of something for yourself would be nice."

*"

par Venöse Multiple Sklerose, CVI & SVI, CCSVI, lundi 30 août 2010, à 23:56

Hi guys, Dr. Simka gave that information to a member (Erika) of our German CCSVI-Forum. I will give you the exact source as soon as I get it. Erika was Dr. Simka’s second CCSVI-patient in 2009 and they are still in private contact. Thanks dear Erika from Slovakia!!!

 

============================================

 

CORRELATION OF LOCALIZATION AND SEVERITY OF EXTRACRANIAL VENOUS LESIONS WITH CLINICAL STATUS OF MULTIPLE SCLEROSIS Simka M, Ludyga T, Kazibudzki M, Latacz P, Świerad M, Piegza J EUROMEDIC Specialist Clinics, Department of Vascular & Endovascular Surgery, Katowice; Poland.

 

ABSTRACT:

 

Background. Chronic cerebrospinal venous insufficiency is suspected to play a role in pathogenesis of multiple sclerosis. Objective. Assessment of the correlations between patterns of venous lesions and clinical characteristics of multiple sclerosis. Methods. Localization and degree of venous blockages in multiple sclerosis 381 patients were evaluated using catheter venography. Analysis of clinical severity included: Multiple Sclerosis Impact Scale-29 (MSIS-29), chronic fatigue and heat intolerance assessment.

 

Results. Venous blockages were found in 97.1% of the patients. Abnormalities were more severe in older patients. No correlation existed between duration of the disease and severity of venous pathologies. Patients with younger age at onset of multiple sclerosis presented with milder venous lesions. Significant correlations existed between severity and localization of venous lesions and clinical burden in terms of MSIS-29 and chronic fatigue scores, but not of heat intolerance.

 

Conclusion. Prevalence of chronic cerebrospinal venous insufficiency among multiple sclerosis patients is very high. Indirect data analysis indicated that venous abnormalities are probably congenital, slowly progress, but are unlikely to be caused by multiple sclerosis. Their severity and localization significantly modify clinical course of this disease. However, they are not likely to directly trigger multiple sclerosis, but there may be another factor initiating the disease."

 

 

Deutsche Uebersetzung, danke cah vom http://www.csvi-ms.net/forum:

 

Zusammenhang zwischen der Position und Schwere von extrakraniellen venösen Läsionen mit dem klinischen Status von Multipler Sklerose" Simka M, Ludyga T, Kazibudzki M, Latacz P, Świerad M, Piegza J EUROMEDIC Spezialklinik, Abt. vaskuläre und endovaskuläre Behandlung, Katowice; Polen.

 

Hintergrund. Von Chronischer Cerebrospinaler Venöser Insuffizienz wird angenommen, eine Rolle in der Pathogenese der Multiplen Sklerosen zu spielen. Zielsetzung. Bewertung der Zusammenhänge zwischen Erscheinungsbildern von venösen Läsionen und klinischen Charakteristiken von Multipler Sklerose. Methoden. Zu Lokalisation und Grad von venösen Blockierungen wurden 381 Multiple Sklerose Patienten mit Hilfe von Katheder-Venographie untersucht. Die Analyse des klinischen Schweregrads beinhaltete: Multiple Sclerosis Impact Scale-29 (MSIS-29), chronische Fatigue- und Hitzeintoleranzbewertung.

 

Ergebnisse. Venöse Blockierungen wurden in 97,1% der Patienten gefunden. Die Anomalien waren schwerer ausgeprägt bei älteren Patienten. Es bestand kein Zusammenhang mit der Dauer der Krankheit und der Schwere der venösen Pathologien. Patienten, deren Multiple Sklerose in jüngeren Jahren ausgebrochen war, hatten weniger schwere venöse Läsionen. Signifikante Zusammenhänge bestanden zwischen Schweregrad und Lokalisation der venösen Läsionen und den klinischen Einschränkungen im Sinn der MSIS-29 und chronischer Fatigue, jedoch nicht der Hitzeintoleranz. Fazit. Die Verbreitung von Chronischer Cerebrospinaler Venöser Insuffizienz unter Multiple Sklerose-Patienten ist sehr hoch. Indirekte Datenanalyse wieß darauf hin, dass die venösen Anomalien wahrscheinlich angeboren sind, langsam fortschreiten, aber wahrscheinlich nicht von der Multiplen Sklerose verursacht werden. Der Schweregrad und die Lokalisation beeinflussen signifikant den klinischen Verlauf dieser Krankheit. Jedoch lösen sie wahrscheinlich nicht die Multiple Sklerose aus, möglicherweise gibt es einen anderen die Krankheit auslösenden Faktor." 

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