IVCC/CCSVI, articles et liens de ce lundi.

Publié le par Handi@dy

Barre google de traduction indispensable!



Neurologists acknowledge vascular disorders play a role in MS.


par CCSVI in Multiple Sclerosis, dimanche 29 août 2010, à 02:27

Here's a wonderful piece on a new way of viewing brain disease---a preventative/diagnostic approach rather than a search for a specific pharmaceutical cure--although this piece focuses on Alzheimers, I believe the logic behind preventative measures for brain health apply to all neurological diseases.  


"While the search for a pharmaceutical cure plays front and center, quietly in the background countless neuroscientists worldwide have concluded that Alzheimer's, as well as memory decline and other age-related dementias are actually slow-developing chronic diseases, like heart disease and cancer, partly dependent on lifestyle and other treatable diseases.


De la Torre, for example, is convinced that Alzheimer's and dementia are particularly tied to cardiovascular factors, notably, constricted blood flow to brain cells, and that midlife screening to detect and correct such heart-related deficits would help prevent much brain degeneration during aging. The special journal issue produced by de la Torre, called "Basics of Alzheimer's Disease Prevention," also included new research on the relationship between Alzheimer's and diabetes, high blood pressure, triglycerides, cholesterol and cholesterol- lowering drugs, (statins), a Mediterranean diet, exercise, fish oil, B vitamins and antioxidants.


Read it and let's discuss this.....



    • CCSVI in Multiple Sclerosis
      All great thoughts, guys! I guess the main point to take away from the article is that there is not one magic pill that will take away disease. The Alzheimer's doctors are finally admitting this.
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      Facebook links woman to MS surgery

      How far would you be willing to go for your health? A controversial procedure involving a needle in the neck seems outrageous to some but for one local woman, this seems to be her only option.

      Louanne Henry, 47, of Lacombe, has lived with multiple sclerosis (MS) for the past six years, but later this month she will be travelling to India for a procedure not yet approved in Canada that could potentially bring the life back to her muscles all thanks to Facebook.

      “At first, all I felt was terror (thinking about going),” said Henry. “Now, I’m so excited to know that I could come home a new person.”

      After experimenting with various drugs that have extreme side effects, Henry said right now this is her last option. Her discovery of the surgery, however, came through the online world of Facebook where she has a network of friends diagnosed with MS whom circulate information daily.

      “One of my friends called me after her procedure and said she had been standing and showering for the first time in years,” said Henry. “She used to be in a wheelchair.”

      There are a number of people Henry knows affected by MS who were significantly helped by the surgery, she said.

      The procedure, not offered in Canada, is costing Henry $6,000 for doctors to cut into her neck and insert a catheter into the blocked veins. A small balloon then opens the veins allowing regular blood flow from the brain to the heart.

      The new and controversial treatment is being used to alleviate symptoms of chronic cerebrospinal venous insufficiency (CCSVI) — a chronic problem where blood from the brain has difficulty reaching the heart. This is often caused by narrowing in the veins that drain the brain. CCSVI is now believed to be a factor in MS and that by increasing blood flow, MS symptoms may be relieved.

      Thoughts from MS Canada
      Neil Pierce, president of Alberta-North West Territories division for MS Canada told the Globe that he would like to see clinical trials and screening for CCSVI held in Canada, and that later this month, our country may be one step closer to achieving that.

      “People come back and have success stories of this treatment,” said Pierce. “We can’t ignore personal experiences. (However) people shouldn’t be putting all their eggs in one basket and there should be a focus on continuing to put money into research. This doesn’t look to be the cure for MS, but a treatment option.”

      Pierce said reasons trials and screening aren’t taking place in Canada is due to the need for more evidence on the treatment. As of now, Pierce said researchers believe the treatment doesn’t fit the science of MS.

      In August, a meeting is scheduled with the Canadian Institution of Health Research and world experts to discuss CCSVI and if there is enough evidence to progress to clinical trials in Canada.

      “If all parties agree, this could be what brings clinical trials to Canada,” said Pierce. ”

      Until then, Pierce said he understands patients needs to seek attention for their MS quickly. He encourages anyone thinking of travelling out-of-country for surgery to consult with their doctors and neurologists first about risks and procedures.

      “Do your homework,” he said."

    • *"

      Colm's story of MS struggle inspires 38-year-old to have pioneering treatment abroad

      A WOMAN who shares a paralysing disease with her sister is set to have a potentially life changing operation after being inspired by a Knutsford Guardian article.

      Sarah Styles, who has multiple sclerosis, is currently in Bulgaria for a radical treatment which is not available in the UK.

      The 38-year-old decided to have the £6,000 procedure after reading about Mereside Road resident Colm McLaughlin.

      Colm had the chronic cerebro-spinal venous insufficiency (CCSVI) treatment In July and spoke to the Guardian about the ‘amazing’ results.

      Sarah, of Mobberley Road, said: “To hear there was something out there gave me hope. It was exciting to meet Colm and understand what the procedure was.

      “Since then it’s been a journey of frustration, anger and disappointment that I can’t have the operation in the UK.”

      CCSVI treatment involves opening a patient’s blocked vein to prevent iron deposits in the brain and there have been a huge number of success stories since then.

      But it has divided the medical community since a woman died of a brain hemorrhage during the procedure in America in August 2009.

      Sarah, who previously worked as a manager at Pennine Acute Hospital Trust, added: “When my appointment was confirmed, there were so many thoughts going through my head.

      “Can I afford to do it? Do I want to do it? What are the risks?

      “But having met Colm and listening to his story and how he improved almost immediately - that was all I really needed.

      “I feel excited and scared but also hopeful.”

      Multiple sclerosis has caused a great deal of misery for Sarah and her family when she was told she had the disease in 1995.

      Then in 2002, there was a glimmer of hope as a neurologist in London told Sarah it was a false diagnosis.

      But she was rushed to hospital in May this year when she was once again diagnosed with the illness.

      Sarah, who has lived in Knutsford for five years, said: “I broke down in tears at the reception desk. I couldn’t get the words out because I was so upset.

      “My mum and dad Barbara and Eric were devastated. When I told my dad he cried and my mum was inconsolable.”

      Then the family faced a further blow when Sarah’s sister Alison, 41, was diagnosed with a mild case of MS three weeks ago.

      It is understood that the disease affects siblings in one of 160,000 cases.

      Sarah added: “My sister said it wouldn’t happen to two sisters - that would be too cruel.

      “I said cruel doesn’t come into it. But God works in mysterious ways as we’ve bonded over this.

      “We text and phone each other every day. It’s my job to keep her strong.”

      Sarah, who is in Bulgaria with her partner Paul, hopes the CCSVI treatment will reduce her pain, bring back strength to her hands and left side and reduce fatigue.

      She also hopes her story will inspire others.

    • Colm's story of MS struggle inspires 38-year-old to have pioneering treatment abroad"
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    Sclérose en plaque - 30ans d'escroquerie !

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    Cecil's Benefit Dance

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    Society of Interventional Radiology Supports Research for New M.S. Treatments

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    Liz Simenik

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    par CCSVI in MS Toronto, lundi 30 août 2010, à 07:10

    Who is the CMSC? 


    This is their mission statement...


    Our Mission: to be the preeminent professional organization for multiple sclerosis (MS) healthcare providers and researchers in North America, and a valued partner in the global MS community. Our core purpose is to maximize the ability of MS healthcare professionals to impact care of people who are affected by MS, thus improving their quality of life.


    CMSC Recommendations:

    The Consortium of Multiple Sclerosis Centers and its members are involved in many activities that support patients and their families. Our goal is to help these individuals sustain a full and rich quality of life while living with MS. In our unique position as the pre-eminent international organization of MS care professionals, we speak as one voice on behalf of patients and their families. For continued efforts in patient advocacy, the CMSC recommends:


    • Partnering with existing established organizations in their advocacy efforts (e.g MS Coalition, National Organization for Rare Disorders (NORD), American Brain Coalition (ABC), One Voice Coalition (a committee of the American Academy of Neurology) and MSIF.


    • Developing and implementing mechanisms to influence healthcare delivery (e.g. support public policy recommendations from the MS Coalition, the MSIF and other advocacy partners, support legislation, etc.).


    • Collaborating with MS groups to promote public policy that results in fair access and appropriate services and therapies to people with MS worldwide.


    • Stay in touch with advocacy issues by visiting the MS Coalition website (www.multiplesclerosiscoalition.org) and the MSIF website (www.msif.org).


    • Educating CMSC members about advocacy issues and obtaining input from the CMSC membership and the MS community about their concerns; encouraging members to learn about what is needed in medical documentation to support patients’ request for disability.




    So that's what they say on their website and in their Advocacy in Multiple Sclerosis document.


    But sadly when you do a simple search for CCSVI on their website, all you can find is the Standford "Stent Death" news, over and over. It's listed 10-times, yet not one other bit of CCSVI research info pops up when doing a search. Nothing about the dozens of CCSVI studies from around the globe.


    All they can mention or point to is the fact that Stanford University research was halted in 2009, because CCSVI treatment is so dangerous. They had two "serious incidents" last year.


    Yet there have been over 2,000 safe CCSVI angioplasty treatments in 2010.


    What about the growing number of "serious incidents" with Tysabri?


    This MS Advocacy group has enormouse influence, yet they seem to be willfully ignorant of the biggest discover in the history of MS. Have they heard anything on CCSVI? Do this group even have internet access?


    They don't really seem like much of an advocate organization to me! Who are they really representing?


    They sure don't reflect the modern voice of those with MS.








    CMSC CCSVI keyword search:



    CMSC News with info on over 20-glowing drug studies:



    CMSC - Advocacy in Multiple Sclerosis:


  • *"
    par Lorin Powell, lundi 30 août 2010, à 02:03

    August, 29, 2010


    Hello to all neurologists and researchers of this big round ball we call earth.

    You may have heard about CCSVI in the media by now. If not, it is time to start checking the internet and quit relying on Morse code. You would be surprised on how much knowledge you can gain from the internet. I will try to bring you up to speed on one page.


    What is Chronic cerebro-spinal venous insufficiency?

    CCSVI is when the flow of blood in the veins draining the central nervous system (CNS) is compromised. It has been proposed to promote the development of multiple sclerosis.  


    What does CCSVI have in relation to MS?

    It is thought that the veins draining the brain are causing a build up of iron in the brain.  

    This build up of iron is thought to be causing the bodies own immune system to attack the myelin sheaths.


    What is Myelin?

    Myelin is a dielectric (electrical insulating) material that forms a protective coating that surrounds each nerve. It is essential for the proper functioning of the nervous system.


    How can we test for CCSVI?

    1. Doppler protocol developed by Dr. Marian Simka
    2. MRV (Magnetic Resonance Venography) protocol from Dr. Haacke:
    3.  Contrast venography, the gold standard


    How can CCSVI be corrected?

    CCSVI can be corrected by a simple venoplasty procedure that is preformed by an interventional radiologist.


    What is venoplasty

    Venoplasty is the ballooning of stenosed (narrowed; constricted) veins


    This is how I explained CCSVI to my son so he could share this information with his Biology class at school.


    You take a river (veins leaving the brain) and build dam (stenosis). This causes a build up of sediment (iron) in front of the dam. Sediment clogs the power turbine, electricity is lost. Iron causes the immune system to attack the insulation around the nerves (Myelin sheaths). No electricity, No power, No signal.


    How can you as neurologists and scientists help CCSVI sufferers?

    You can work with people who have been afflicted with CCSVI by allowing interventional radiologist to remove the dam. We need you to show the world you are ready to pull your finger out of our dams and let our rivers flow.


                     If you need anymore information click here 


    Thank you

    Lorin Powell

    Nanaimo B.C"

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    Controversial MS treatment theory proposed in Sask. 10 years ago

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    Intensive, Directed Nutrition and Neuromuscular Electrical Stimulation for Secondary Progressive Multiple Sclerosis

Commenter cet article

Quichottine 30/08/2010 14:57

Eh bien... IL faut vraiment pouvoir traduire...!!


J'ai pas mis la barre google de traduction, mais je passais seulement te faire un coucou et te dire que je pensais à toi.


J'espère que tu vas aussi bien que possible. Je t'embrasse.

Handi@dy 02/09/2010 23:23

Merci Quichottine! Je vais... Lentement et avec retard, pour la ccsvi! :0010: