Hamilton Conference Feb 7 .......Updated (Feb 22)

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby ozarkcanoer » Tue Feb 09, 2010 7:37 am

Waterbear,

Thanks for this positive response from the MS Trust !!

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Postby MSchick » Tue Feb 09, 2010 7:40 am

Obviously this is a very hot topic, again, and the National Post also has an article in today's paper at:

http://www.nationalpost.com/todays-pape ... id=2538808

I obtained a CD copy of my Doppler ultrasound that I had done on Jan. 29, 2010 to which the neuro-radiographer states, in his brief report, nothing remarkable, basically all normal. But I had sat with him to review it and when pointed out some of the baselines of where the impulses were above the line, he excused it as a possible aspiration (breath) but seeing the images at the presentations, it could be mine! So, now I am on the hunt for a second opinion.

Continue to be your own advocate. I am looking forward to my MRV in late April and hope they will have a better grasp on how and what to look for at that time. I was very fortunate to have had a MRI technician with at the conference who said that in the almost 100 patients they have done they have not found 1 positive CCSVI case, but then said, but we haven't been looking in the right place nor using the correct method! So, if you were tested and nothing was found, wait a bit and get re-tested!
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Postby markus77 » Tue Feb 09, 2010 8:54 am

Ask for scans, says MS pioneer
Urges patients to ask for MRIs to check neck veins for blockages
February 09, 2010
Joanna Frketich
The Hamilton Spectator
(Feb 9, 2010)


MS patients are being told to seek MRI scans and treatment by an Italian doctor pioneering a radical and unproven theory that the disease is vascular.

But it will be next to impossible to get the tests and surgery in Ontario, leaving thousands of patients vying for 100 spots in a Hamilton study testing the theory.

Dr. Paolo Zamboni urged doctors to be more open to his ideas during a media conference at St. Joseph's Hospital yesterday -- his first North American appearance since his theory of "chronic cerebrospinal venous insufficiency" started gaining worldwide attention in the fall.

"If I should be a neurologist and read similar reports ... the first thing I should do is to investigate the neck veins of my patients," said Zamboni. "My suggestion is to investigate patients as soon as we can, not to simply criticize."

He said the test to find out if veins draining blood from the brain are blocked and the procedure to improve the blood flow are already known to be safe and effective and should be available to MS patients.

"We think treatment of CCSVI can be done," he said. "CCSVI is a vascular disease, probably congenital, with guidelines in diagnosis and treatment."

However, the Ministry of Health made it clear yesterday it won't fund the scans or balloon angioplasty to treat it because it considers Zamboni's theory to be "experimental."

Canada has one of the highest rates of MS in the world -- about one in 1,000 people have the disease -- so doctors say scanning them would overwhelm the health-care system.

"We'd swamp MRI capacity," said Dr. John Paulseth, director of the MS clinic at McMaster University Medical Centre.

He said there isn't enough proof yet to use so many health resources to do the scans and surgery.

"I think his hypothesis is very worthy of further study," said Paulseth. "But it needs to be corroborated."

That leaves MS patients with only one option in Ontario -- trying to get into the study being launched by St. Joseph's Healthcare, McMaster University and Hamilton Health Sciences. It is putting in a proposal to the MS Society of Canada today to scan the veins in the brains and neck of 100 MS patients with varying degrees of the disease and compare it to the veins of 100 similar healthy people. They're looking to see if the veins of people with MS are blocked while healthy people's are not.

The researchers have already had more than 22,000 MS patients from around the world try to get into the study. They are looking for other funders so they can test more people.

Only the University of British Columbia is doing similar testing in Canada.

Patients can pay to get the scans in the United States but it costs about $4,500.

It has left MS patients feeling hopeless just as the potential of a new treatment is coming to light. The mystery neurological disease was believed until now to be an auto-immune reaction, where the body attacks itself, with no cure or effective treatments.

"I'm trying to stay positive," said Jennifer Dennis, who lives in Whitby and is trying to get into the St. Joseph's study. "I have hope (about the theory) but I don't know if I particularly have hope for me."

The 26-year-old single mom pleaded with health professionals to no avail to use the study protocols when they did a regularly-scheduled MRI in December.

"It's very frustrating," she said. "Here is a potential medical breakthrough for a crippling disease and they don't want to do it. It only takes one person to take the chance but right now no one is willing to take the chance."

She worries by the time CCSVI is rigorously studied that it will be too late for her.

"This would be huge for me," she said. "My case hasn't progressed very far yet."

Dr. Mark Haacke, who works out of both McMaster and Detroit, says he thinks Canada is missing out on the opportunity to create a national database of MRI scans on MS patients.

"My personal opinion is that ... patients should be getting these images," he said.

Both Haacke and Zamboni acknowledge more study needs to be done, although they say early research out of Poland and Jordan is backing up Zamboni's theory.

Tomorrow, the Buffalo Neuroimaging Analysis Center is expected to release the first results from its CCSVI study of 500 patients. The results are predicted to back up Zamboni considering it is now moving forward from studying the MRI scans to testing the treatment.

"The preliminary results are exciting scientifically and will generate a great deal of discussion," stated the center's director Dr. Robert Zivadinov in a newsletter last week. "This particular research is having an impact like no other we have known."
STAY REAL MY FRIENDS

dx 1989, spms
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Postby markus77 » Tue Feb 09, 2010 9:11 am

i always thought Canada was the best country in the world to live now i am seriously reconsidering that thought. words can not explain my anger and dissappointment on the stand the medical community and Health Minister is taking on CCSVI.
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Postby sbr487 » Tue Feb 09, 2010 9:24 am

markus77 wrote:i always thought Canada was the best country in the world to live now i am seriously reconsidering that thought. words can not explain my anger and dissappointment on the stand the medical community and Health Minister is taking on CCSVI.


These Drs are showing their true character. More desperate they become, higher the chances of ccvsi succeeding ...
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Anger into Action

Postby Squeakycat » Tue Feb 09, 2010 9:28 am

markus77 wrote:i always thought Canada was the best country in the world to live now i am seriously reconsidering that thought. words can not explain my anger and dissappointment on the stand the medical community and Health Minister is taking on CCSVI.


The same will likely be true here, in the UK and elsewhere so it is going to take some concerted political action to change things.

For the cost of treating around 2,000 people with MS for a year using relatively ineffective DMDs, 25,000 people could be screened for CCSVI.

I think that once there is some solid data from the BNAC study, it should be possible to make the case that we (US, Canada, UK, Oz, Deutschland, et alia) need to embark on acrash study to test 25,000 people with MS for CCSVI which will lay the ground for treatment.

Governments stand to save substantial sums on health care costs if CCSVI proves out and effective treatments are developed so this should be an easy case to make to both executive and legislative branches of government for the immediate release of funds to do large scale screening which will put to rest any doubts about the link between CCSVI and MS.

As soon as the Buffalo numbers are officially released, we should be able to quickly channel anger into action!
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Postby Boreas » Tue Feb 09, 2010 10:43 am

markus77 wrote:words can not explain my anger and dissappointment on

which is understandable. yet this CCSVI-thing has progressed with lightning speed compared to other researches - thanks to a few devoted researchers supported by an active community. And it will continue to do so!
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Postby mangio » Tue Feb 09, 2010 11:41 am

Sometimes folks caution can also be a positive. The eighth death
being reported two days ago from Tysabri - 31 PML. Approved
in many countries as our latest greatest treatment. In one state
in America young children with Ms are given this drug intravenously monthly as new wonder drug protocal. Can't even imagine how scientists
and neurologists could do this to children. Of course I could,
it's the same old story repeating itself. It's the latest thing...

28 children that have been diagnosed with leukemia and 11 of them have died. This is the data from Italy alone from a new MS approved drug.
But it gets nastier because the doctors thought this new
miracle drug could be deployed for another
patient population - in the Rheumatology field - with basically
the same horrible results. Twenty seven solid cancer deaths.

Another great medical story on CTV website about CT scans to the head of children
worldwide that is causing large numbers of cancers. The scan
numbers per year have treble in a decade since the technology
was introduced to the medical world.

I am very glad we have some hesitant medical people that
are taking a cautionary approach to CCSVI until this is theory
is on more solid footing for good reason.
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Postby mshusband » Tue Feb 09, 2010 11:47 am

Putting a foreign chemical compound into a body is one thing ... opening up veins and improving bloodflow to a natural state (to a state most non-MS people have) is something completely different. The two can't even be compared!

That's an irrational statement you made mangio ...

You can be skeptical if it delivers long term results (nobody knows) ... but you can't say it is the same as putting something foreign in your body that they know has risks ...
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Postby yonderboy » Tue Feb 09, 2010 12:03 pm

Mangio said:

28 children that have been diagnosed with leukemia and 11 of them have died. This is the data from Italy alone from a new MS approved drug.
But it gets nastier because the doctors thought this new
miracle drug could be deployed for another
patient population - in the Rheumatology field - with basically
the same horrible results. Twenty seven solid cancer deaths.

Mangio, can I ask: What you are talking about !!! - what drug, what news release are you quoting?

Thanks.
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Postby EdW-uwo » Tue Feb 09, 2010 1:38 pm

DizzyLiz wrote:Edw uwo
How many people were at the conference?
Were there many questions asked? especially about treatment? that might indicate some vascular doctor interest?

What were your thoughts about the movement towards treatment for MSers?


I think were about a hundred people or so in attendance. Lots of questions asked, mostly technical. Not knowing who most of the questioners were, I can't say for sure that they represented vascular surgeons' interest! As for treatment, I think it's something that people want to move towards, definitely, but there's also a lot of interest in getting the imaging and diagnosis straight first.
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Postby EdW-uwo » Tue Feb 09, 2010 1:39 pm

Pepe wrote:Edwuwo,

How many procedures in Poland...Stanford...Jordan ...and Italy?

Thanks in advance.


Don't know, sorry! In the Jordanian study, they examined 20 patients and 20 controls, but it wasn't clear how many people actually had procedures done.
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Postby MSchick » Tue Feb 09, 2010 2:49 pm

Poland had 250 patients with a 95% success rate on the internal jugular vein (IJV). Of that, 43 were balloon procedures, 21 of 1 IJV and 22 where both IJV's were corrected and 18 were deemed best with stents.

I don't have my notes on Jordon, they were less.

Dr. Zamboni also mentioned a paper published regarding 'Diagnoses and Treatment of Venous malformations ... where 47 countries agreed on the contents and positive result!
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Postby Zeureka » Tue Feb 09, 2010 3:29 pm

MSchick wrote:Poland had 250 patients with a 95% success rate on the internal jugular vein (IJV). Of that, 43 were balloon procedures, 21 of 1 IJV and 22 where both IJV's were corrected and 18 were deemed best with stents.

I don't have my notes on Jordon, they were less.

Dr. Zamboni also mentioned a paper published regarding 'Diagnoses and Treatment of Venous malformations ... where 47 countries agreed on the contents and positive result!

MSchick, thanks for picking up that info! Great result in Poland, so am one of the 250 (my CCSVI diagnosis was now also confirmed in Italy - they found EXACTLY the same internal jugular vein blockage result on me as Simka).

By the way, the MS societies really try to threaten us with death for the intervention...(it's in the Q&A of article below). I guess to know the reasons, but has ever one of you really heard about a death case?!! There is sufficient info to read about potential risks (and forum talks about that in detail), but specialists confirmed to me that those are generally low. Death is definitely exaggerated...! Or give me the concrete case...And for me personally the risk-benefit analysis certainly on my side.

Feb 09, 2010
UPDATE: CCSVI or Blood Flow in the Brain and Venous Insufficiency in MS – Society Leaders Meet with Dr. Zamboni Today. Research Proposals Received from Around the World on February 9th Grant Request Deadline
http://www.nationalmssociety.org/news/n ... x?nid=2206
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Postby EdW-uwo » Tue Feb 09, 2010 4:14 pm

MSchick wrote:Poland had 250 patients with a 95% success rate on the internal jugular vein (IJV). Of that, 43 were balloon procedures, 21 of 1 IJV and 22 where both IJV's were corrected and 18 were deemed best with stents.

I don't have my notes on Jordon, they were less.

Dr. Zamboni also mentioned a paper published regarding 'Diagnoses and Treatment of Venous malformations ... where 47 countries agreed on the contents and positive result!


Thanks for filling us in on the numbers! I confess, I was a bit more interested in the pathology and theoretical aspects of what was presented. I think the "47 countries" paper is the one that classifies CCSVI as a congenital malformation (http://csvi-ms.net/en/content/consensus ... y-iup-2009).
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