Wolfville couple adamant Liberation treatment offers hope

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

Wolfville couple adamant Liberation treatment offers hope

Postby Cece » Wed Dec 11, 2013 6:18 am

http://www.kingscountynews.ca/Living/20 ... ers-hope/1
Zamboni, Alkenbrack says, “exposed a CCSVI iceberg – and the tip of this iceberg is slowly emerging. We must not let those who want to push it down under the surface of the water take control of this research.

“We don’t have all of the answers, but we have a glimpse of some of them.”

Great article.
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Re: Wolfville couple adamant Liberation treatment offers hop

Postby cheerleader » Wed Dec 11, 2013 2:39 pm

Thanks for the link, Cece.
Christopher Alkenbrack is an incredible human being...he's smart, compassionate, energetic and bi-lingual :)
He's president of the National CCSVI Society in Canada, and has gone from his wheelchair to using one cane.
Walking, living proof--
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Re: Wolfville couple adamant Liberation treatment offers hop

Postby CureOrBust » Wed Dec 11, 2013 4:59 pm

Zamboni may not be a saint, Alkenbrack says, but he indeed is a pioneer - a professor of vascular surgery who allowed himself to think outside the box. He even performed the procedure on his own wife.
ummmm... maybe they could of mentioned that his wife had MS... instead it could be read that he used her as a lab rat to prove it was a safe procedure. :lol:

When I read articles (yes I understand they are for general public consumption and therefore related to boosting sales) I consider how others might interpret the information. On that point, it reminded me a lot of the Aimspro hoo-haa that went on a few years ago, that has just about gone totally silent now.
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Re: Wolfville couple adamant Liberation treatment offers hop

Postby NHE » Thu Dec 12, 2013 5:20 am

Zamboni may not be a saint, Alkenbrack says, but he indeed is a pioneer - a professor of vascular surgery who allowed himself to think outside the box. He even performed the procedure on his own wife.

I would be surprised if this were true. From the videos of Dr. Zamboni, one can see that he has neurological impairment in one of his hands (I tend to recall that it was the left one, but I can't be certain). It seems more likely that he supervised the procedure.
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Re: Wolfville couple adamant Liberation treatment offers hop

Postby centenarian100 » Thu Dec 12, 2013 5:14 pm

I find it odd that you guys are so easily impressed by annecdotes.

The history of medicine is riddled with treatments purported to have beneficial effects which have later been refuted by more dedicated scrutiny

For instance, take a look at the interesting history of blood letting: http://www.history.com/news/a-brief-his ... oodletting

"Respected physicians and surgeons extolled the practice, generously prescribing it to their most esteemed patients. Marie-Antoinette, for instance, seemed to benefit from a healthy dose of bloodletting while giving birth to her first child"

I'm sure physicians who practiced blood letting had great confidence in their intervention and could tell us many stories of impressive recoveries.

Unfortunately, these treatments aren't always successful. Take a look at what poor Charles II had to endure after suffering what was retrospectively a cerebrovascular event followed by focal epilepsy:

http://www.aintnowaytogo.com/charlesII.htm

Don't underestimate the powerful placebo effect

"The physician's belief in the treatment and the patient's faith in the physician exert a mutually reinforcing effect; the result is a powerful remedy that is almost guaranteed to produce an improvement and sometimes a cure." -- Petr Skrabanek and James McCormick

While I'm sure Alkenbrack is a great guy, and I admire his dedication to helping others, his story simply isn't good quality evidence for the efficacy of liberation. He went to Italy with great hopes and with significant emotional and financial investments in the success of the procedure.

You guys underestimate the effect of confidence, hope, mood, and energy on disability.
You guys also underestimate the "regression to the mean" phenomenon. Improvement in multiple sclerosis without treatment is not uncommon, and symptoms can fluctuate significantly, especially in relapsing disease but also in progressive disease.

The point I'm trying to make is that we should judge efficacy of treatments of MS based on well designed trials, not based on anecdotes. All new treatments will show promise at some point, but 95% of them will turn out to be duds.

For pharmaceuticals, it's all a side-show until you have two positive phase III trials. The same should be true for liberation. Show me the money. If the procedure works, it will work when patients/investigators are blinded and EDSS/MRI outcomes are quantified and compared to placebo.
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Re: Wolfville couple adamant Liberation treatment offers hop

Postby centenarian100 » Thu Dec 12, 2013 5:20 pm

There is no conspiracy by the health care industry. Sure...you don't have billion dollar pharmaceutical companies promoting it like they promote their precious overpriced drugs.

The skepticism towards CCSVI is based on poor evidence. Multiple subsequent studies have questioned Zamboni's original findings of a strong association between venous anomalies and multiple sclerosis, and there are currently no good high quality trials suggesting that liberation is effective.

Neurologists weren't recommending tysabri before the AFFIRM and SENTINEL trials. Why would they recommend liberation before there is convincing data that it works?

-C
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Re: Wolfville couple adamant Liberation treatment offers hop

Postby Cece » Fri Dec 13, 2013 8:33 am

centenarian100 wrote:For pharmaceuticals, it's all a side-show until you have two positive phase III trials. The same should be true for liberation.

The comparison should not be to pharmaceuticals but to other endovascular procedures. How does the discovery process in interventional radiology work? Development of techniques needs to precede the testing of the techniques.
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Re: Wolfville couple adamant Liberation treatment offers hop

Postby cheerleader » Fri Dec 13, 2013 9:45 am

There were NO clinical trials for shunting of CSF in NPH patients. It was based on a theory from one neurologist And no one cried "placebo" when his patients began walking, thinking clearly, or regained bladder control. They studied the procedure, and found ways to increase cerebral perfusion and CSF flow. Which is exactly what CCSVI venoplasty has been shown to do:
http://ccsviinms.blogspot.com/2012/11/n ... -once.html

Cece is right, the comparison to gold standard drug trials is fallacious reasoning.
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