Canadian media reporting on death from CCSVI complications

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Canadian media reporting on death from CCSVI complications

Postby happy_canuck » Thu Nov 18, 2010 3:59 pm

I feel for his family as this story is going crazy on Canadian news channels.

Why don't they make a big deal when someone dies from a drug prescribed for MS? Mahir died after trying to make a better life for himself and his family.

The second, and crucial, part of the story isn't out yet -- his Canadian doctor told him to return to Costa Rica instead of treating him locally.

So sad.

http://www.cbc.ca/health/story/2010/11/ ... ml?ref=rss
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby Blaze » Thu Nov 18, 2010 5:24 pm

I think it's critically important all sides of the story be told. I agree with Happy Canuck--where is information about deaths from Tysabri? And, where is information that this man was turned away in Ontario, which claims to have outstanding health care?!?

This is devastating for the man's family. Many condolences.
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Postby concerned » Thu Nov 18, 2010 6:06 pm

There's often stories about Tysabri deaths in the WSJ.
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Postby marcstck » Thu Nov 18, 2010 6:22 pm

Mostic was disappointed and desperate. His friends and loved ones raised another $8,000 US to send him back to Costa Rica after they had trouble getting a specialist to see him in Canada.

"They didn't want to touch him because he was done outside of Canada," Jelin said



This is the eighth paragraph any CBC story. To say that the story is ignoring the fact that this poor soul couldn't get treated in Canada is incorrect.

I understand how emotional this topic is for all MS patients, myself included, but please, let's try not to find monsters hiding under the bed every time a negative piece about CCSVI has been published. By far, the coverage in Canada has been overwhelmingly positive. Unfortunately, cases such as this one, and last week's story on stent thrombosis, are just now coming to light. It would be irresponsible of the press not to report them.

I do agree that more publicity should be given to the Tysabri deaths, but at this point I think most MS patients are aware of the risks inherent in taking the drug. At least here in the states, patients taking Tysabri have to sign off on a document that explicitly talks about PML.

I don't think that the average patient understands the risks involved with traveling to far-flung clinics for liberation procedures that include stents. Most have seen story after story about people returning with wonderful news to report, and have seen video after video on YouTube of patients demonstrating the benefits they've seen after liberation. This darker side of the story needs to be told, so that people can make informed decisions about just what actions they should and should not be taking.

Don't forget, many patients are acting strictly on what they see or read in the news media. The majority of MS patients are not as well-informed as the folks who frequent sites such as TIMS…
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Postby PCakes » Thu Nov 18, 2010 7:18 pm

.. my prayers for this man, for this family.. for this child.
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Postby thornyrose76 » Thu Nov 18, 2010 7:21 pm

The sad part is is that the medical establishment in Canada, Canadian doctors would not help this man, that he was turned away...everyone sayss make sure you have aftercare in place before you go ahead and proceed with treatment. Well, then that means every Canadian with MS forget it, throw out your hope and continue on with the status quo. The government will not allow treatment in Canada under any circumstances bc it is an unproven treatment , clinical trials , double blinded studies must be conducted. Um, okay, but then wait the Canadian government says they will not fund any scientific studies for ccsvi... great that helps. So a little tiny province called Saskatchewan decides they will fund a treatment study of their own, commencing in 2011...great at least they are bypassing the freakin' conservative government!! Thanks to them for taking the bull by the horns, bc as everyone knows Saskatchewan has the highest prevalence of MS anywhere for that matter. Dr. Sandy Macdonald of Barrie said it and has been saying it forever and a day, venous angioplasty is a $1500 procedure, both treatment and studies can co-exist in our country , it does just south of here so what's the problem? But our government and our gov't run medical system isn't listening. And that is the issue north of the 49th parallel.
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Postby thornyrose76 » Thu Nov 18, 2010 7:28 pm

I'm Canadian, and I know that those that have had the angioplasty have either seen some improvement, no improvement or remarkable improvement, some of had problems, some fatal. Much of the press in Canada have shown the pro's and the cons and hasn't all been glowing, believe me and from day 1.
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Postby Cece » Thu Nov 18, 2010 8:45 pm

Is there a fund set up for this man's family? When this story first came to light, it was said that they were trying to raise the money to transport the body home.

The Costa Rican doctor's assessment was that it was the blood thinners that caused this. We should find out what blood thinners those were, if any one of us is ever to be put on them and if it's not the same as what standard of care would be here or in Canada. The fatality at Stanford was also attributed to the blood thinners.

I wish this had turned out to not be true.

Thornyrose, in two provinces there have now been official statements that they will provide care as needed for complications for CCSVI treatments done out of country. I think they are catching up. There was a telling statement, I forget which doctor or official it was from, but it was that they could not do a redo or repeat of the experimental procedure. I think that shows a lack of knowledge. There may be times when the vein recoils to what it had been and the patient wants a do-over, but that is not to be confused with a clotting or complication or emergency care situation.
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Postby 1eye » Thu Nov 18, 2010 9:50 pm

MS_Liberation would not have the clotting she has today, if there had been follow-up care available in Ottawa, Ontario, the capital of this country. Her 'MS' is back.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby happydance » Thu Nov 18, 2010 10:07 pm

http://www.cbc.ca/video/player.html?category=News&zone=health&site=cbc.health.ca&clipid=1651736286

My heart goes out to his family and friends. Now this little boy has to grow up without a father when he should of gotten help in Canada.
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Postby PCakes » Thu Nov 18, 2010 10:09 pm

Tides turn..
Blaze wrote:Here is a link to a CTV story that Alberta has announced they will help treat complications for Albertans arising from CCSVI treatment outside of Canada.
http://www.ctv.ca/CTVNews/TopStories/20 ... ta-101116/
Quebec College of Physicians and Surgeons made a similar announcement last week. Hopefully, other provinces and territories will soon follow.


The British Columbia College of Physicians & Surgeons https://www.cpsbc.ca/node/213 will continue to treat patients who need help, said Susan Prins, the college's director of communications.

Prins stressed doctors are not ethically obligated to re-do an experimental CCSVI procedure, but would treat complications that result, such as a blood clot.

"The expectation would be that they would take care of that patient in need, absolutely," said Prins.


Newfoundland, Quebec, Alberta and B.C.
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Postby happy_canuck » Fri Nov 19, 2010 12:18 am

marcstck wrote:This is the eighth paragraph any CBC story. To say that the story is ignoring the fact that this poor soul couldn't get treated in Canada is incorrect.


I agree, Marc, but this paragraph was missing for the first iteration of the online story. The CBC has greatly expanded it since then.

I struggled to report this death on Facebook (and did so here on TIMS) 5 days after it happened, but people didn't want to hear it. We couldn't release his name because his widow did not consent, but now apparently she is talking. Even without his name, I felt the news had to be released because people were not always pursuing follow up ultrasounds, even when advised to do so by their angioplasty doctors.

Much more media coverage will be on this tomorrow.

~Sandra
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />
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Postby Blaze » Fri Nov 19, 2010 6:05 am

Here is some of that additional media coverage:

From Globe and Mail:
http://www.theglobeandmail.com/news/nat ... le1805379/

From Toronto Star:
http://www.thestar.com/news/canada/arti ... ms-surgery

It was also on CBC Radio Ontario Morning today. I'm sure it is also elsewhere across Canada.
Last edited by Blaze on Fri Nov 19, 2010 6:12 am, edited 1 time in total.
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Postby erinc14 » Fri Nov 19, 2010 8:21 am

Details emerge about man who died after MS therapy

http://www.ctv.ca/CTVNews/Health/201011 ... on-101119/
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ms meds kill also

Postby patticake66 » Fri Nov 19, 2010 8:29 am

This makes news but when people die from tysabri it doesn't make the news. The media is a joke.
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