Drugs and surgery use different standards for acceptance.

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

Drugs and surgery use different standards for acceptance.

Postby fogdweller » Fri Jun 11, 2010 9:29 pm

I'll bet no one can find a careful, peer reviewed, double-blind study comparing those receiving surgery for removal of an appendix after it ruptured and those where no surgery was performed. How do we know that removing a ruptured appendix is a good idea?

If my brain blood flow is shown to be defective in that the venous outflow is impaired (veinous inssuficiency, right?) and they know who to correct that problem, shouldn't they do it? Whether or not I have MS? This is corrective surgery. The hell with the MS, I want my blood flow to my brain corrected, and if the neuros want to sit back and study how that effects my MS, fine, I'll be happy to cooperate. But fix the blood flow.

What is the issue???
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Right Argument

Postby MarkW » Sat Jun 12, 2010 4:11 am

Hello fogdweller,
You put forward a logical argument: 'treat my symptom of CCSVI now'.
Unfortunately most people on this chatroom are bogged down in linking CCSVI and MS in a physiological manner. From my studies of the physiology of MS and CCSVI, there is currently insufficient data to prove a physiological link.
However, like you I stick with the correlation between CCSVI and MS as a very good reason for saying 'treat symptoms of CCSVI in pwMS now'.
Kind regards,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby belsadie » Sat Jun 12, 2010 4:13 am

I am with you 100%. I think anyone who considers your appendix analogy ( a really good one) must come to the conclusion that if a problem is identified and there's a tried and true successful intervention, WHAT IS the problem with using it? How is that thinking flawed?
I'm of the opinion that it's a combination of patient safety and good old fashion PRIDE. The Neuros just can't fathom that an intricate part of their practice has been erroneously claimed by them for so many years! Understandable? Maybe...but let's show some professional and personal fortitude and just LET IT GO. Work in tandem with the vascular people. They will prove to be a valuable part of the TEAM.
That concept [team] is very difficult for most physicians, not all, to come to grips with.
Well, I say to them,"Put on your big boy pants and DEAL WITH IT!"
This is the future of real people who deserve a real and hopefully lasting fix.
If that isn't their [neuros] reality, then step aside, cause we're common' through!

:wink: :wink:
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Postby fogdweller » Sat Jun 12, 2010 9:43 am

belsadie wrote:I'm of the opinion that it's a combination of patient safety and good old fashion PRIDE. The Neuros just can't fathom that an intricate part of their practice has been erroneously claimed by them for so many years!


I believe you are right about the pride issue. Neuros have been telling their patients for 20 years that MS is an autoimmune disease. How humiliating it will be to have to admit that it is really a plumbing problem. Plus they lose the patient to the IRs.

I disagree about the safety. Angioplasty is very safe. (Watch Dr. Scalfini's video http://espr3ssioni.wordpress.com/2010/0 ... 0e09824a58. He mentions that one of the reasons he started his thread was to correct the misinformation that angioplasty was dangerous.)

Stents,HOWEVER, are a safety issue. They are made for arteries, make break lose, and if they do they will migrate down to the heart. The only two adverse events in the hundreds of cases done before they stopped treatment involved stents. But the MS societies and neuros constnatly repeat the dangerousness of ANY procedure, stens or angioplasty. ANGIOPLASTY ITSELF IS NOT DANGEROUS!!!

You may ask about restenosis which does happen with angioplasty. That is not a harmful result, it is just that the veins are returning to their stenosed condition, i.e. the angioplasty was not successful and needs to be done again. The patient is no worse off than he was before the angioplasty.

My plea... do the very safe procedure on a person who needs it since it is shown to correct the problem...CCSVI.
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Postby Cece » Sat Jun 12, 2010 2:15 pm

I don't fully get it either. It used to be okay to experiment with new surgical techniques but now this needs to be done under IRB so that hospitals and docs don't get sued (and patients are protected)? Or it is ok to experiment with surgical techniques on an individual but not a cohort (such as the cohort of MSers).

One of the things I took away from DrS's Italy speech was him repeating that these findings in veins are abnormal.

Abnormal needs fixing. Docs remove ruptured appendixes because they are abnormal; they'll fix abnormal veins too, soon as they all agree with dear DrS that these are indeed abnormal.
"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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Postby fogdweller » Sat Jun 12, 2010 4:35 pm

Cece wrote:I don't fully get it either. It used to be okay to experiment with new surgical techniques but now this needs to be done under IRB so that hospitals and docs don't get sued (and patients are protected)? Or it is ok to experiment with surgical techniques on an individual but not a cohort (such as the cohort of MSers).

One of the things I took away from DrS's Italy speech was him repeating that these findings in veins are abnormal.

Abnormal needs fixing. Docs remove ruptured appendixes because they are abnormal; they'll fix abnormal veins too, soon as they all agree with dear DrS that these are indeed abnormal.


I don't think "abnormal" is the standard. I think it is "harmful and can be fixed". In other words, it may be abnormal to have one eye green and one eye brown, but that is not harmful, whereas if you have cataracs, that may be normal for someone your age, but it is harmful and can be fixed.

The problem is that stenosed veins have not been scientifically proven to be harmful, according to the neuros. It certainly has not been proven to be the cause of MS yet, with this I agree. However I think poor blood flow to the brain or spinal cord strikes me as per se harmful, and I think that the work already done by Zamboni and Sclafini show that with mere angioplasty, it can be fixed.

I am not sure surgeons would like to say that what they are doing using a known technique (angioplasty) for a new use (clearing vein stenosis) is experimenting, but I guess to some extent it is. IRs do that all the time, though. They use it to clear up blockages all over, if it does not seem to dangerous. My late step father had angioplasty in his carotid arteries, and also in his esophegus when he was having troulble swallowing. They use it all over the body.

If it were a totally new tecnique, that definitely would be experimenting.

And I think you are absolutely right, I think the main reason that hospitals insist that the doctors do the work under IRB approval is to protect against lawsuits. I am almost ashamed to admit it, but I am a lawyer, and I understandhow Dr. Dake using stents to treat MS would scare the crap out of Stanford, especially after one or two adverse events.

(Also as a lawyer, I am especially amazed and in awe of Dr. Sclafini and all his willing advice given over the internet!!! I note that no other doctors are willing.)
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