Calgary man back on his feet after MS treatment

[puckluck2]

http://www.calgarysun.com/2012/08/08...r-ms-treatment

On Saturday, Bonney arrived back in Calgary after undergoing the treatment, walking without a cane, much of his vision restored, and 90% mobility in his right hand.

Though his left hand is still fairly affected by the disease, Bonney said he’s thrilled with the success.

“I can tie my shoes again, I can do my buttons up by myself, I can do my own laundry, I can cut my own grass,” he said.
He offered up a “gigantic heartfelt thank you” to everyone who helped make the treatment a reality.
“I can’t believe what people did for me — it’s given me a second life,” he said.

Great success story. So shouldn't this procedure be covered?

[Knut]

This again.

It is extremely uproven in scientific studies and has only had anecdotal success.

You can not just start covering procedures that only have anecdotal evidence to support it.

[GoinAllTheWay]

Hard to say really. One of my brothers friends had the same thing done and it made no difference to her at all. I have no idea what the actual success rate is but think it's rather low. However...if it does help some people, why not?

[troutman]

Chronic cerebrospinal venous insufficiency (CCSVI) treatment

http://www.sciencebasedmedicine.org/?s=+CCSVI+

http://www.sciencebasedmedicine.org/...is/#more-21333

CCSVI is a radical proposal seeking to fundamentally change our understanding of MS. Proponents of this new hypothesis have failed to meet the burden of evidence for such a radical change. Results of the burst of research that has taken place over the last three years display the typical variability and noise for a null hypothesis – that the notion is not true. There is no convincing evidence that CCSVI exists, and now there is no convincing evidence that treatments based upon the CCSVI theory are effective. Further, these treatments are invasive and pose serious risks.

Despite low (but not zero) prior plausibility, the medical community has dedicated a significant amount of time and effort to doing serious research into the question of CCSVI. If it has any legitimacy, they want to know about it. They also want to back up their opinions with reliable evidence. Despite this, believers in CCSVI are enthusiastically weaving conspiracy theories to explain away legitimate scientific skepticism toward this new hypothesis.

The medical politics blocking CCSVI trials

http://www2.macleans.ca/tag/ccsvi/

[Knut]

More info.

[edit]Adverse effects
While the procedure has been reported to be generally safe for MS patients,[19][39] severe potential complications related to the angioplasty and stenting include intracranial hemorrhage, stent migration into the heart and jugular vein thrombosis.[13]

Two cases of severe adverse events have been reported in the scientific literature; a death due to a cerebral hemorrhage while on anticoagulant following a stent insertion, and a migration of a stent to the heart's ventricle.[19]

Some United States hospitals have banned the surgical procedure outside clinical trials until more evidence to support its use is available.[6][40]

In 2010 Stanford University halted CCSVI treatments after these two serious incidents. Dr Jeffrey Dunn, associate director of Stanford’s MS center, called on other neurologists to speak out about the potential "dangers" of the unproven procedure: "If I can do anything to protect MS patients from the potentially devastating effects of false hopes or the risks of invasive and unproven treatment, I am happy to do so".[41]

Two Canadians have died after undergoing CCSVI treatment abroad.[42]

On 10 May 2012 the U.S. Food and Drug Administration issued an FDA Safety Communication on CCSVI, stating that MS patients undergoing procedures to treat CCSVI (using angioplasty and/or stenting) risk serious injuries or death. Furthermore, the benefits of these experimental procedures have not been proven. It notes that studies exploring a link between MS and CCSVI are inconclusive.[7]

From http://en.wikipedia.org/wiki/Chronic..._insufficiency

[Knut]

Originally Posted by GoinAllTheWay

Hard to say really. One of my brothers friends had the same thing done and it made no difference to her at all. I have no idea what the actual success rate is but think it's rather low. However...if it does help some people, why not?

Because the risks of the procedure at this point outweighs the benefits.

[Locke]

I've done the taxes for about a dozen MS sufferers who have had this therapy and its only worked for one of them. For that one person it was practically a miracle, but for the others they spent a lot of money, went through a lot of pain and got absolutely nothing out of it.

It still has a long ways to go.

[Locke]

Originally Posted by fotze

Bullcrap. This herald article is all "science" needs. These politicos at silly hall need to cover this remarkable surgery pronto. "Scienticians" say that they need more data than 1 data point, but guess what? It was a real scientist that came up with this procedure.

I agree. Screw Alberta, the City of Calgary should take over all Health Care policies!

[Five-hole]

Shea's a good friend of mine. Two years ago I was golfing with him. When I saw him a couple weeks ago at a benefit to raise the money for this procedure he couldn't even walk. I've known another person who got this treatment as well and it substantially improved their quality of life.

MS sucks.

[Knut]

^ No one is saying that people can not go and get the treatment. You have to ask what is making it work though ?

Is it placebo from actually feeling like something could be done ? Or is there certain people with MS that this will work with ?

More research needs to be done before the province should start funding it, especially because a few Canadians have died from the procedure.

[puckluck2]

Originally Posted by Hesla

This again.

It is extremely uproven in scientific studies and has only had anecdotal success.

You can not just start covering procedures that only have anecdotal evidence to support it.

You're right, it is way too early, but I expect it to be covered in the next 3 years.


Here's an old link

http://www.thestar.com/news/canada/a...l-ms-treatment

The group of neurologists, radiologists, vascular surgeons and other researchers met in Toronto on Tuesday and concluded that a meta-analysis of preliminary results of those seven ongoing diagnostic studies as well as the latest published research showed enough of a link between what Zamboni called Chronic Cerebro-Spinal Venous Insufficiency (CCSVI) and MS that further studying the liberation treatment is warranted.

“It permits us not to lose any more time,” said Dr. Alain Beaudet, president of the CIHR.

Seems like more people are getting on board and this will become a reality for MS sufferers in no time. Seems like the success rate os at about 60% and that is a whole lot of people living better lives because of doing this treatment.

[puckluck2]

Originally Posted by Hesla

^ No one is saying that people can not go and get the treatment. You have to ask what is making it work though ?

Is it placebo from actually feeling like something could be done ? Or is there certain people with MS that this will work with ?

More research needs to be done before the province should start funding it, especially because a few Canadians have died from the procedure.

A lot of Canadians have died from plastic surgery as well, any surgery has a risk to it.

And more research is being done. The University of Buffalo is tirelessly researching this "cure". The Canadian government has already agreed to pay for clinical trials.

[troutman]

Originally Posted by Iginla

Seems like the success rate os at about 60% and that is a whole lot of people living better lives because of doing this treatment.

What is the evidence for that?

http://www.sciencebasedmedicine.org/...is/#more-21333

The evidence, however, is what ultimately drives mainstream thinking about a disease and its treatment. In the case of CCSVI we now have the results of a large observational study. Zamboni’s group has also published a study of the liberation procedure, with weakly positive results, but given his role in this controversy few find the results compelling.

Dr. William Pryse-Phillips, a Canadian neurologist, followed the results of patients from Newfoundland and Labrador who went overseas to have the liberation procedure done. This was not a randomized trial, although the assessments were blinded. They followed 30 patients who had the procedure and 10 controls who did not. They found no benefits from the procedure – there was no improvement in standard measures of MS severity and no difference between treated and untreated patients. Further several patients developed clots in their jugular veins after the procedure. If the underlying concept of CCSVI is correct then these patients should have become significantly worse – but they didn’t.

Reports of the study also indicate that two Canadians have died from the procedure, but it was not clear if they were in this study or not (probably not, considering how it was reported).

[Knut]

Yes, but plastic surgery is elective and not covered by health care unless it is medically necessary.

I am not saying this doesn't work, just that we should not rush it through the system. It is great that they are really looking into it as a possible treatment.

Likely the first step will be to allow Canadian doctors to conduct the procedure then maybe 5 years after that it may get funding. It will likely fall under "elective procedures" for many years, IF IT IS BACKED BY EVIDENCE.