Conflicting CCSVI Data

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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1eye
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Post by 1eye »

Being paid by drug companies or making any kind of financial gain related to how you practice medicine allows you to be controlled by someone other than your patient, who is also paying you, and may be unaware of your behavior. This conflict will damage patients, financially and/or physically. Doctors, wake up to your ethical problem before you unnecessarily make someone suffer or die.
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cheerleader
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Post by cheerleader »

Whoa, Betty.
Dr. Burks is a good guy. He was brought into the CCSVI discussion by CCSVI Alliance president, Sharon Richardson, an early patient of Dr. Dake's

Here she is, interviewing him with Dr. Zamboni:
www.ccsvi.org

We are trying to open dialogue between neurology and vascular doctors. If they don't start communicating, we are all sunk.

The neurological journals are publishing negative studies faster than vascular doctors can scan a jugular....there are more positive studies coming at the ISNVD...but if a vascular doctor publishes in a vascular journal, and no neurologist reads it, it doesn't make a sound....
don't jump on scorpion (at least not for this...)
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Post by PointsNorth »

Burks is in control but you can tell his cage has been rattled. I've heard some reasonable observations by neurologists but a lot of misinformation too. Did you hear him speak with Zamboni?

I wonder if Burks learned about social media right around the time that Hosni Mubarak did? Keep up the cage rattling - maybe some more screws will come loose!

Thanks for posting, Scorp.

PN
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Post by codefellow »

1eye wrote:Being paid by drug companies or making any kind of financial gain related to how you practice medicine allows you to be controlled by someone other than your patient, who is also paying you, and may be unaware of your behavior. This conflict will damage patients, financially and/or physically. Doctors, wake up to your ethical problem before you unnecessarily make someone suffer or die.

WAY TOO LATE FOR WAY TOO MANY........ :(
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Post by erinc14 »

erinc14 wrote:it's a myth that ms is an autoimmune disease and it took a vascular surgeon to show this not a neurologist and now they're so hostile they're practically foaming at the mouth .
and they're legacy will be that they just watched as people were destroyed because their brains and spinal cords were under assault .
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Post by scorpion »

Those performing the procedures, on the other hand, are only in it for the money and their supporters are comprised of conspiracy theorists, internet bloggers, and nut jobs
and they're legacy will be that they just watched as people were destroyed because their brains and spinal cords were under assault .
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Post by 1eye »

scorpion wrote:
Those performing the procedures, on the other hand, are only in it for the money and their supporters are comprised of conspiracy theorists, internet bloggers, and nut jobs
Somebody doesn't quite understand sarcasm...

I am fine with science. If people want to take a long time and cross Ts and dot Is , they can take as long as they want. I'm sure they will get things sorted out. I object, though, to the blanket statement that covers the dying CCSVI patient, as well as the SP'MS' patient, for whom there is no other treatment, that they should not seek out and get this procedure done, paying for it if necessary. If someone wants to pay to have this done, and someone else says they have RR'MS', they too have every right to pay for it and get it. Are we afraid now, that we'll run out of 'MS' patients to experiment on?

We're not slaves. We're free, sentient humans with human rights. Just because some of us have money and you want it, does not excuse treating us like chattel.

For all the feigned altruism, I have not seen one neurologist come out and say the truth, that this can save people from death, let alone save spending money unnecessarily. In medicine, a lot of new drugs and successful procedures have been done, and a lot of lives have been saved, with a lot less unassailable proof. Where is the humanity? Someone should not have to die because of someone else's bad experiences with bee stings, snake venom, or any other poor excuse.

If Paulo Zamboni is unhappy with this attitude toward the gift he has given the world, what did he expect from a lot of very sick people without any other hope? We won't pay lip-service to angry neurologists just to appease their egos.
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Post by Lyon »

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Last edited by Lyon on Fri Jun 24, 2011 6:58 pm, edited 1 time in total.
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Post by rainer »

1eye wrote:Being paid by drug companies or making any kind of financial gain related to how you practice medicine allows you to be controlled by someone other than your patient, who is also paying you, and may be unaware of your behavior. This conflict will damage patients, financially and/or physically. Doctors, wake up to your ethical problem before you unnecessarily make someone suffer or die.
Dr. Zamboni is acting as a consultant to Esaote, a Genoa-based manufacturer of ultrasound equipment which is selling the only machine approved by Zamboni for diagnosing “CCSVI”.
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1eye
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Post by 1eye »

If you require proof before they save your life, I will stay out of the argument altogether :) It's hard to prove, without one of those three-blind-mousey trials, isn't it? Perhaps if we sacrificed a *lot* of mice, you would be convinced. Oh, I must be *soooooo* gullible.
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1eye
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Post by 1eye »

Although it is irrelevant, I find it difficult to believe that there is only one Doppler ultrasound machine Dr. Zamboni 'approves' for anything, Except perhaps for German researchers :). Besides, who cares? He has adequately described the use of any generic Doppler scanner in his papers. And he is *not* doing any procedures himself. I would think he would agree that x-ray venoplasty is the gold standard for both conclusive diagnosis and treatment of CCSVI.

Do you have an appointment to get tested by him? Would you rather he used a Toshiba?
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Post by Lyon »

..
Last edited by Lyon on Fri Jun 24, 2011 6:58 pm, edited 1 time in total.
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Post by Cece »

rainer wrote:Dr. Zamboni is acting as a consultant to Esaote, a Genoa-based manufacturer of ultrasound equipment which is selling the only machine approved by Zamboni for diagnosing “CCSVI”.
When I was at AAC having my ultrasound done, a tech from another AAC clinic from CA was being trained in. She had done many CCSVI ultrasounds at her former clinic, on a different machine. She thought the one they had at AAC in Brooklyn was superior to what she had used before. I am not sure of the technical whatnot but it made for easier image capture and identification. The one at AAC Brooklyn was an Esaote (MyLab25Gold, to be precise, I looked it up afterwards); the one at her usual clinic was not an Esaote.
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Post by Cece »

Lyon wrote:I only wish I could make you and others understand that some kind of substantiation really does have value but as you've mentioned so often, it's your decision.
Best decision ever.
Ok, marrying my husband and having my kids ranks up there too.

I look forward to further substantiation coming in but for me, the existence of severe venous blockage in the jugulars was itself compelling enough to get it fixed, particularly given how physically miserable I have been feeling for years.
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Post by CureIous »

scorpion wrote:
garyak wrote:burks is a partner in crime

Dr. Burks disclosed financial relationships with Acorda, Allergan, Avanir, Bayer, Biogen Idec, Novartis, and Serono.


8O Nevermind. Disregard the entire article!!!!!!!!!!
The whole thing just reads like a recap of stuff we already know and have hashed to death since 2009, most of the neuro articles are resoundingly, unequivocally negative, and the angio publications show something quite different.

News flash, this isn't that provocative. Though dangling the baited hook can be fun at times, when it becomes one's MO 99% of the time, the fish tend to just want to nibble a bit here and there.

This is about control, welcome to politics masquerading as science. This type of article also attempts to further cement into place a line, easily delineating who is pro and con so as to divide into "camps" as if it's "desperate patients grasping at straws" vs. "sound medical science" and nothing in between.

So yeah, there's not much to see here.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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