Post-Zamboni CCSVI

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Post-Zamboni CCSVI

Post by frodo » Mon Feb 25, 2019 2:13 am

Though is currently considered that the CCSVI procedure is not helpful in the average case, the concept of a CCSVI disease (vascular malformations) survives:

"There is a considerable evidence that there is a venous disease affecting the extracranial veins in MS" ... lCode=phla

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Re: Post-Zamboni CCSVI

Post by CureIous » Sat Apr 13, 2019 7:50 pm

Its not helpful because treating doctors are not research doctors, just good guessers for a fee.

Zamboni was doomed from the start with his poorly structured trials.

Once the IR's figured out that treating then retreating endlessly was a futile attempt they bailed like rats from a sinking ship.

But hey check out the cool new drugs.

Once you figure out that most doctors are either
A. Medical school textbook idiots, or
B. Greedy, or
C. Combo of both, then you go in asking the right questions.

I didn't, at least not back then, but oh boy do I ask the right questions now lol. And throw in enough fancy words that they talk back to me in fancy words and generally feel intimidated. Good, they should, cause I guarantee ya cognitive dysfunction in this kid has been gone a long long time.

Check this out, since I know I'm shouting into the wind anyways, but here goes:

My actual questions for Dr. Dake, his most excellent highness grand poobah of all greatness at Stanford university, during my April 2010 follow up:.
"So how does everything look?" , images on the screen from 1.5 hour long MRV plastered on the screens behind him in his office...

"Oh great" or words to that effect. Whatever.

Knowing what I know now, the actual question would be:
"Right here in the follow up MRI report, it CLEARLY states that "the stent on the right side previously image 8/2009 is not longer visible".
"Please explain that Dr., because you JUST put an IVUS up that same vein so I'm pretty sure you KNOW its not there, and if not in the internal jugular vein then where exactly is it!?"

Oh wait, so its dropped down my RIJV, but because of what just happened with Oliver and Holly, better to leave well enough alone? "

"So either it is bouncing around inside my heart, OR possibly spit back out into the right pulmonary vein, right?"

"Isnt it better to attempt to fish it out NOW, rather than having it fully implant where practically NO stent has ever been removed right?".

Just so you guys get the gravity of what that greedy selfish idiot at Stanford has done to protect his empire before the patient, to remove that stent NOW, that mind you I myself discovered its location by accident in 2016, would involve at a MINIMUM, the following:

Possible removal by snare tool or various other modalities, done by wire.
With an emergency heart surgeon on standby, because attempting to extract a stent that has been implanted for 9 years is extremely risky. Especially in the right pulmonary artery, the risk of tears, damage, embolism and DEATH is extremely high, if any damage occurs they have to basically crack you open and then attempt some funky bypass on the fly.

Sound like something worth messing around with? Oh it was easy in 2010. Not so much in 2016, or now. In fact the risk/reward ratio tells the story, so now I get the complications, and no easy way to image other than CT, the stent is bent around the corner of the artery, with prongs extending into other branches.

You dont just yank that out. You just hope and pray it doesnt disintegrate or cause problems in the lung it feeds, oh wait forget about it that has already happened.

So pardon me if I dont give two shits about Dr. Dake and his loyal minions however few are left. The guy ***ed me royally, and my family along with me. All he cared about was avoiding controversy. Not ME the patient.

He was negligent and heartily practiced malfeasance with nary a twinge of conscience. Not even a little. Frankly if they pulled his medical license today I would throw a party to celebrate .

And don't think I would publicly denounce him and his medical practice and reputation if I could not prove it in a court of law. I welcome the opportunity.

Other than that am doing great.
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:, Virtually symptom free since, no relap

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Re: Post-Zamboni CCSVI

Post by jimmylegs » Fri May 29, 2020 1:29 pm

checking in, @CureIous - how are you doing this year? i have been thinking about experiences like yours, oliver/radeck's and holly/peekaboo's lately :'(

related ... Procedures

take control of your own health.
pursue optimal self care, with or without a diagnosis.

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Re: Post-Zamboni CCSVI

Post by patientx » Tue Jun 09, 2020 10:46 pm

Please remember those who went to Dr. Michael Dake desperately seeking help.

Holly/peekaboo, who boarded a plane a day after Dr. Michael Dake's procedure, and didn't wake up, due to a brain hemorrhagic stroke.

Oliver Zahn who had to undergo open-heart surgery, thanks due to Dake's stent migrating straight to his heart.

For what it's worth, Dake has moved on. For anyone in Arizona needing surgery DO NOT go to the University of Arizona; apparently they are hiring the bottom of the barrel: ... chael-Dake

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