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A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
Lyon
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Post by Lyon »

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Last edited by Lyon on Sun Nov 20, 2011 5:36 pm, edited 1 time in total.
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eric593
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Post by eric593 »

Lyon wrote:I'm not saying what's right, wrong or inaccurate but sceptics in established medicine might have in mind that almost 50% restenose within a year, likely a high percentage of that within weeks and who knows what increased percentage after a year and that is on the shoulders of the fact that benefit has not been attributed to the procedure.

I'm not saying they are right in their concerns but in a strictly analytical way they are justified in their concerns and hesitation.
Absolutely.

I'm only glad that the 50% is restenosing and ballooning can happen subsequent times. I would think more carefully about it if 50% had some serious side effect than just a restenosis. But 50% risk of restenosis for a procedure that is quite safe, with not only anecdotal reports of benefit but some MRI evidence and unblinded data showing beneficial impact, I don't quite understand the strong resistance. If the risks were greater, I could understand. Off-label use usually happens for things without anyone blinking an eye because they already know that the treatment/medicine is quite safe.

I think a lot of it, as others have said, is how this all unfolded. Doctors don't like to hear about a potential treatment from a television program discovered by some guy from Italy named after an ice cleaning machine that winds up galvanizing patients and turns everything upside down and patients do not back down but become stronger and more vocal and refuse to go away. That combination does not sit well with the medical profession. From that point on, digging in heels happened and rather than evaluate it from a more objective position, I think many people/professionals didn't want to look foolish by giving an inch from their original position.

And doctors/others can hang onto their original positions until we have blinded data. I can't wait to hear the Buffalo results. Many may still try to stick with their initial objections and find weaknesses with the data, but the majority who will see a sinking ship when their feet become damp will do the right thing and admit that "there is probably something to this" and become supportive. IMHO
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Drury
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Post by Drury »

Lyon,

Don't people have the right to choose whatever treatment they would prefer?

My point is that Italy is not America and dare I say egos might be involved ?

If the auto immune theory is still not proven - and it is not then why is the vascular theory so outrageous? that is the bit that I am having a hard time with.

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Lyon
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Post by Lyon »

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Last edited by Lyon on Sun Nov 20, 2011 5:36 pm, edited 2 times in total.
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Drury
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Post by Drury »

Lyon,

We have been to 3 doctors (2 neurologists) that have said it is 'nonsense'
'outrageous' and 'absolutely laughable.'

Drury
Lyon
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Post by Lyon »

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Last edited by Lyon on Sun Nov 20, 2011 5:36 pm, edited 1 time in total.
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Drury
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Post by Drury »

Lyon,

You might have a point if they had come up with a cure or at least a treatment that works!

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Cece
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Post by Cece »

Lyon wrote:
Cece wrote: What about Dr. Zamboni's endovascular treatment trial? He got positive results.
:)
:)
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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