IVCC/CCSVI, liens et articles de ce dimanche.

Publié le par Handi@dy

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Husband with MS obtained liberation with angioplasty

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SIR COMMENTS ABOUT ENDOVASCULAR TREATMENT OF MULTIPLE SCLEROSIS (CCSVI)

SIR President James F. Benenati, MD, FSIR:

"There is great popular interest in two reports of the role of neurovascular venous stenosis in multiple sclerosis and that some of these patients may respond to treatment by angioplasty and/or stenting. SIR will publish a position statement indicating its support for high-quality ethical clinical research to determine the safety and effectiveness of new interventional M.S. treatments. The position statement, "Interventional Endovascular Management of Chronic Cerebrospinal Venous Insufficiency (CCSVI) in Patients With Multiple Sclerosis: A Position Statement by the Society of Interventional Radiology," is endorsed by the Canadian Interventional Radiology Association and will be published in the September Journal of Vascular and Interventional Radiology [http://www.jvir.org/] ."
--It is important to me that people considering the option of venous intervention for treatment of their multiple sclerosis symptoms understand the stage of this procedure. It is currently thought to be promising, yet quite experimental. More research is needed before we truly know whether it works or if there is simply a placebo effect that we see in patients who have undergone the treatment. If it works, however, it could revolutionize the way we think about multiple sclerosis."
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par Lorin Powell, samedi 21 août 2010, à 16:45

 August, 21, 2010               

 

Take two Aspirin and call me in the morning

 

Take two Aspirin and call me in the morning, remember those days?

The whole approach to health care is changing people have had enough of being prescribed medication for every little symptom. Today we even see commercials on TV not all bugs need drugs. We have let this happen and now it is time for us to look after our own body and not depend on pharmaceuticals for every cough or sneeze.

 

I firmly believe that MS is a symptom of CCSVI. Now the question will be are people born with CCSVI or does it develop over time. There are so many questions and the neurologists are still pushing the Aspirin. I strongly feel that there is a definite link between CCSVI and many more neurological disorders. If you restrict blood flow leaving the brain and in turn this causes a build up of toxins, what do you think will happen?

 

This is a turning point in medical history, a whole new approach treat the cause not the symptom. As a society we all need to change when it comes to our health. We need to educate our government and healthcare providers to our new way of thinking.

We have to keep pushing for this change; otherwise the neurologist will keep prescribing medication for every neurological disorder. Our venous system runs our body, if it is dysfunctional so are we.

 

Health ministers and the government of Canada

 

Please fix our veins

 

 

CCSVI sufferers of Canada"

 

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Questions to ask when considering CCSVI treatments to deal with your multiple sclerosis

  •  Questions to ask yourself
  • Questions to ask the potential CCSVI service provider
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    Premier inches towards MS trials

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    Saturday, August 21, 2010

    Bits and Pieces: Little Bit of Everything Edition

    NYC - MoMA: Andy Warhol's Campbell's Soup Cans

    Image by wallyg via Flickr

    There's a Chinese restaurant around the corner from my apartment building that makes incredibly quick deliveries. Sometimes it seems like the delivery guy is knocking on the door of my apartment before I even put the phone down. I really don't know how they do it. Anyway, the menu features an item called "Little Bit of Everything Soup", and that's just what it is, a delicious medley of a little bit of everything. The soup is a meal in itself, sometimes even two meals, since the portions delivered can seemingly be measured in gallons.

    That's kind of what this post will be. I don't know that there's any real connection between any of the items here, other than they all piqued my interest in one way or another, and most at least have something peripherally to do with MS or mobility issues. So, submitted for your approval/attention/enjoyment, I present to you the following tidbits…

  • Since CCSVI seems to be at the top of the list of everyone and everything involved with MS these days, I'll start off with a couple of "vascular theory" items.

    Demonizing socialized medicine is a favorite pastime of much of the US population, but as our Canadian friends are showing us, there's something to be said for a medical system that doesn't rely almost entirely on pharmaceutical companies to fund medical research. Although the Canadian national government hasn't yet acted in regards to CCSVI (although there has been plenty of debate about it in Parliament) the country's individual provinces are starting to step up to fill in the void. Saskatchewan started the ball rolling, with the province’s Premier, Brad Wall, announcing that Saskatchewan will start funding clinical trials of the Liberation Treatment regardless of the inaction of the national government (click here). Several other provinces, including Québec (click here) and Nova Scotia (click here), have joined Saskatchewan's call to action. Kudos to the Canucks, as treatment trials of the Liberation Procedure, which will be the quickest and most direct way to prove or disprove the CCSVI hypothesis, are desperately needed. Kudos also to my younger brother, who now lives in Montréal, is the Dad of an adorable French-speaking toddler, and recently became a Canadian citizen. The accomplishments of my little bro may have nothing at all to do with MS, but, hey, it's my blog and I'll kudo who I want to…

    One of the growing problems with the CCSVI wildfire that is raging through the MS Internet world is that folks new to the idea are getting an unrealistic picture of the success rate of the Liberation Procedure. If a patient were to get their knowledge strictly from YouTube videos and the various CCSVI related forums, they could easily get the impression that the procedure almost always results in dramatic improvements in those who undergo it. The reality is not quite as rosy, though, as some patients see little or no improvement after being treated by a Liberationista (I think I just invented that term, and I kind of like it). Dr. Siskin, the Liberationista working in Albany, recently stated publicly that one third of his patients experience only minor improvement, and another third no improvements at all.

    Having said that, I can't resist sharing the wonderful post-liberation experience of an MS patient name Nicole, who is a fellow member of the Patient Advisory Board of the CCSVI Alliance (click here). She first underwent venoplasty on her blocked veins at the beginning of March and saw some immediate improvements, but her veins then restenosed and her improvements receded. Nicole underwent a second procedure less than month ago, and has again experienced some very positive results, this time validated by her neurologist. She's written a great account of her triumphant neuro visit on her blog (click here). I'll have more to say regarding CCSVI in my next post, which will be entirely devoted to the subject.

  • A fascinating article published in the New York Times this week (click here) details how a normally dormant gene in human DNA can somehow become "reanimated" and cause a form of Muscular Dystrophy. Scientists have learned that up to 95% of the genes that makes up the human genome are junk, remnants from the ancient past that have remained part of the structure of human DNA but serve absolutely no purpose in the development and functioning of modern human beings. Researchers were surprised to discover that some of this genetic junk can become reactivated, and in this case cause a rare variant of Muscular Dystrophy.

    What really grabbed my attention about this article is that several years ago researchers at Tufts University suggested that a similar mechanism may play some part in the MS disease process (click here). Many of the dormant genes in human DNA are left over bits of ancient retroviruses, which at one point were infectious, but over the course of hundreds of thousands of years of evolution have simply been harmlessly incorporated into the structure of the human genome. Scientists at Tufts suggested that the presence of long term "smoldering" infections, such as Epstein-Barr virus or HHV-6, might somehow activate these normally dormant viral remnants, thus leading the immune system to attack the body's own cells, and cause what has been come to be called the autoimmune reaction. The idea makes much sense, and at least offers some explanation of autoimmunity. I'm always incredibly frustrated when doctors simply label a disease like MS "autoimmune" and leave it at that, without attempting to explain why on earth the immune system would simply decide one day to become cannibalistic and start attacking the body's own cells. CCSVI offers one explanation of the apparently aberrant immune response seen in MS, and this reactivated gene theory offers another. They could very well both be right, as MS is so heterogeneous that a variety of different mechanisms may be at work in the different forms and presentations of the disease.

  • The Beautiful Brain is one of the most interesting websites I've come across in quite some time (click here). Exploring the intersection of neuroscience and art, the site features essays, interviews, and galleries that delve into the how’s and why's of the biological impulses that lead to creative expression. It's filled with stimulating information about the essence of creativity, and the natural inclinations that lead human beings to feel the need to make music, paint, dance, and embark on all of the other artistic endeavors that so enrich our lives. It's also features lots of eye candy, amongst which is a gallery of intriguing artwork created by WK reader Elizabeth Jameson, who uses her own MRI images as the basis for creating striking visualizations (click here). Definitely worth checking out, but be forewarned, you may very well lose several hours getting sucked into the world of The Beautiful Brain.
  • Moving from the sublime to the ridiculous, here's a page that highlights some of the most asinine wheelchair ramps ever constructed (click here). Whereas The Beautiful Brain leads one to marvel at the mystery and majesty of human intellect, this site reminds us that the stuff that resides between many people’s ears is no cause for celebration. Wheelchair ramps built at impossibly steep angles, that don't reach all the way to the top of the stairways they are meant to circumvent, that end in mid air? Yup, here they are, in all of their idiotic splendor. I have personally almost killed myself trying to navigate my chair up the nearly vertical incline that one New York City restaurant thoughtfully provides for its disabled customers, so the examples illustrated on this page should really come as no surprise. Still, though, I paused, stared, and wondered at the sheer stupidity behind the planning and execution of some of these comically absurd monstrosities. Attempting to actually use them would give new meaning to the words Wheelchair Kamikaze. Wow.
  • Though you might not agree with everything he writes about or stands for, journalist Christopher Hitchens is inarguably an immensely talented scribe, and holds a high place among those storied and playfully wicked spirits known as gonzo journalists. Recently diagnosed with esophageal cancer, Mr. Hitchens wrote this exceptional piece for Vanity Fair (click here), in which he comments on his sudden abduction into the world of the ill, the very real likelihood of his own demise, and the seeming randomness of it all. A must read for everybody, whatever their state of health.
  • I added a little doohickey to the left column of this page that allows readers to enter their e-mail addresses so that notifications of new posts will be sent directly to their inboxes. Wouldn't want anyone to miss a second of the exciting goings on here at Wheelchair Kamikaze. Yawn.

Well, that's all there is. And, as Peggy Lee sang so many years ago, in a sentiment that I think Christpher Hitchens would appreciate, if that's all there is, let's break out the booze and have a ball. If that's all there is…"

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Women laud MS procedure

 

 Kennedy Supports National Clinical Trials of MS Treatment


 

The minister of health says he supports national clinical trials for a controversial new treatment for Multiple Sclerosis. On VOCM Open Line with Randy Simms, Jerome Kennedy says the province will pay its fair share of funding if national trials for the liberation treatment are carried out. Kennedy says while the province is willing to foot some of the bill, the trials will take time. Kennedy says there needs to be a research and science-based approach to approving the treatment.

 

The issue will be up for further discussion at the health ministers meeting in St. John's on September 13-14.


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To the future--CCSVI --How will it be treated??--Nanotechnology Creates Artificial Artery for Clinical Trials

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Hartman hopeful help will come

NewS.27.20100819172818.Amber_20100820.jpg

Amber Hartman has a scary disease, because there isn’t a true cure.

She has Multiple Sclerosis.

But Hartman isn’t taking this sitting down.

She is planning on going to the U.S. for a Chronic Cerebro-spinal Venous Insufficiency (CCSVI) surgery.

CCSVI is basically when the blood supply from the brain and spine has trouble returning to the heart.

This theory was first brought forth by Dr. Paolo Zamboni.

He made the connection that if there was a way to unblock the veins then it would relieve some of the symptoms of MS.

There have been several experimental treatments over the last few years which have shown promising results.

Nov. 24, 2009, the Journal of Vascular Surgery reported that patients experienced a reduction in the number of MS attacks, a significant reduction in the amount of brain lesions, experienced an improvement in the quality of life and only in cases where the veins re-narrowed, did the symptoms return.

Hartman was first diagnosed with possible MS in June 2001. Possible MS has all the same symptoms as MS.

“But I don’t have a lot of spots on my brain,” she said.

“It was because I did early treatment and natural treatments.”

Her life has changed since she has had to deal with the symptoms of MS.

“It’s good and bad,” she said.

“I used to be very independent and I have had to learn how to trust others.”

I have also had to learn to be patient.”

Hartman found out about the CCSVI surgery through a co-worker at her sister’s job. “They had seen it on W5,” she said.

“So I went online and watched all W5 that had it (CCSVI surgery).”

Hartman also found out more about the CCSVI surgery through online networking.

“On Facebook I started building up a community of friends from all across the world that have MS,” she said.

She is currently on a waiting list in a clinic in the State of New York which has bookings starting in late January and early February.

“You can get bumped up easily because many people apply to more than one clinic,” Hartman said.

“When Canada brings it in, it will only be for the worst cases, in the U.S. it is first come, first serve,” she explained as to why she has chosen to undergo the procedure in the U.S.

The CCSVI surgery is also available in other countries.

Hartman won’t know about her surgery date until four months before the booking.

Once she is able to get into a clinic, Hartman needs to be able to come up with the money.

“It’s about US $2,000 for testing, US $3,000 for the surgery, flights and hotels are estimated around US $3,000,” she said.

But if Hartman needs a stent or two it will cost her US $2,000 per stent.

She has high hopes for the CCSVI surgery.

“From what I have been seeing online from their before and after pictures, a lot are walking again,” she said.

Walking is one of the benefits she wants to feel.

“I always over do it,” commented Hartman about her body getting tired easily and how it affects her life.

She also experiences numbness.

From this she gets many bruises and cuts that she doesn’t realize until someone asks her about them.

Hartman wants to encourage individuals with MS to also look into this surgery.

But she also wants to note that it isn’t for everyone.

“There are three different types of MS,” she said.

Thus, Hartman is looking for help to reach her dream of being able to walk around with ease and get her gardening back up to snuff.

She has an account set up at Scotia Bank.

She is also planning several fundraising events.

A pub night is set for Oct. 2 at Murphy’s Pub.

Peggy and Dave Williams have made a generous donation along with Hartman’s family."

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TAKE TWO ASPIRIN

ccsvi lorinpar Lorin Powell, samedi 21 août 2010, à 16:45

 August, 21, 2010               

 

Take two Aspirin and call me in the morning

 

Take two Aspirin and call me in the morning, remember those days?

The whole approach to health care is changing people have had enough of being prescribed medication for every little symptom. Today we even see commercials on TV not all bugs need drugs. We have let this happen and now it is time for us to look after our own body and not depend on pharmaceuticals for every cough or sneeze.

 

I firmly believe that MS is a symptom of CCSVI. Now the question will be are people born with CCSVI or does it develop over time. There are so many questions and the neurologists are still pushing the Aspirin. I strongly feel that there is a definite link between CCSVI and many more neurological disorders. If you restrict blood flow leaving the brain and in turn this causes a build up of toxins, what do you think will happen?

 

This is a turning point in medical history, a whole new approach treat the cause not the symptom. As a society we all need to change when it comes to our health. We need to educate our government and healthcare providers to our new way of thinking.

We have to keep pushing for this change; otherwise the neurologist will keep prescribing medication for every neurological disorder. Our venous system runs our body, if it is dysfunctional so are we.

 

Health ministers and the government of Canada

 

Please fix our veins

 

 

CCSVI sufferers of Canada"

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