Notes from CureIous' at Stanford

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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CureIous
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Re: Notes from CureIous' at Stanford

Post by CureIous » Mon Apr 03, 2017 12:53 pm

vesta wrote:Greetings.

When did you have the accident that dislodged your stent and do you think that is related to your hand symptoms and cervical spine lesions?

Best regards, Vesta
vesta wrote:Greetings.

When did you have the accident that dislodged your stent and do you think that is related to your hand symptoms and cervical spine lesions?

Best regards, Vesta

Good question, actually after reviewing MRI reports, a few which had been languishing in my email inbox for years unread, I can categorically state that the right stent migrated from it's position sometime early 2010, not long after implantation, and not as a result of any accident.
MRI 4/2010 did NOT visualize right stent, only left stents.
Whenever it moved, I was not aware, neither noticed anything.

Also, the MS disease activity back then was quite a bit more pronounced on MRI with/without contrast, than my latest MRI.

As I'm sure we're all aware, lesion count, lesion enhancement post-gad etc. is not always a reliable predictor of disease severity and/or symptoms. That being said, I did find interesting that this recent neuro I saw, a pain management doc not MS specialist, noted that it would be the front left parietal lobe which may be of interest insofar as the right hand is concerned, and that is in fact where quite a bit of lesion activity had been noted in the past, enhancing or not. So not sure if and how the recent cervical lesions factor in, I'll see what MS doc says later this month. Mostly these are academic considerations anyways. Okay so we know thus and so, what exactly to do about it?

New-neuro of course reccomends drugs. Not interested. While this "latest" setback is disheartening, the other symptoms which were far more debilitating are still gone, and while everything I have recently reviewed states that the right vein is/was compromised very early on after stent migrated, the left side continues to hold up it's end of the bargain, so at least there's that.

Again, no regrets, and would not change much except perhaps increasing Right stent diameter. I am far more functional on a daily basis today, than 2008. Just have a numb right hand.
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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Re: Notes from CureIous' at Stanford

Post by CureIous » Sat Apr 13, 2019 8:05 pm

Copied from my reply on another thread. Just bored so what the heck.

Its not helpful (CCSVI Treatment) 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. They never did and STILL don't get, that most narrowings are transient. They move. Here today gone tomorrow, but see imaging is EXPENSIVE, so all the Zambonis do is scan. Find a spot. Treat. Scan one more time, maybe two. Miss all the other stuff going on in the interim. Declare it all a dismal failure.
Which really sucks, because there is not a doubt in my mind that haemodynamic flows in and out ARE a major component of this complex labeled "MS". Too bad none of them had the vision to compose a properly structured trial, with a proper amount of scans BEFORE treating with a bunch of venoplasties that would ultimately fail anyways. What a joke.

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: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

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Re: Notes from CureIous' at Stanford

Post by patientx » Fri Apr 19, 2019 7:40 pm

Just so you know, the great Dr. Michael Dake has moved on from Stanford:

https://uahs.arizona.edu/senior-vice-pr ... chael-Dake

https://uanews.arizona.edu/story/michae ... h-sciences

Perhaps he was chased away by those neurologists who dared question he slow down before immediately jumping on the Zamboni bandwagon and implanting venous stents in a questionable practice, all for a hefty fee.

After reading those press releases, I really question the judgement of the University of Arizona. Did they do no background research?

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Re: Notes from CureIous' at Stanford

Post by CureIous » Fri Apr 19, 2019 9:34 pm

Medical protects medical. That simple.
I should forward them two mri/ post op reports, one from August 2009, one from April 2010, then ask if they would like to amend their glowing presentation propaganda on Dr. Dake to include " pioneered groundbreaking cath procedure on MS patients in 2009", only lost 2 stents, just two, one surgically removed in an emergency open heart surgery, and the other, well he decided to just let it be because it was too risky to inform the patient".

Btw I have now heard from 5 different doctors, including a vascular surgeon, "wow, never saw that before". Not a migrated stent lodged in THAT spot, just doesn't happen, nothing in the medical literature, mind if we write up a paper on it?".

"Oh and it will probably kill you trying to remove it NOW, best leave it alone at this point".

I should post pics....
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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Re: Notes from CureIous' at Stanford

Post by NHE » Fri Apr 19, 2019 10:53 pm

Hi CureIous,
CureIous wrote:
Sat Apr 13, 2019 8:05 pm
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.
I'm sad to hear that your dislodged stent is causing problems. I remember that you did so well initially. How is the stent affecting your lung?

I often wonder about all those people who went to Poland and got stents as though they were on a factory assembly line...

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Re: Notes from CureIous' at Stanford

Post by CureIous » Sat Apr 20, 2019 5:58 am

Thats the problem, we're talking about a nickle titanium stent that was made for veins, not for the vasculature that directly feeds the lungs. There is some kind of really nasty looking inflammtory process upper right lobe that has them stumped so far, I've been tested for just about everything, all the usual suspects, from TB to Histo, candida and on and on.
My labs are perfect, at least as far as indicating something systemic in the blood. Pulmonary function tests good, cardiac echo ekg stress test all good, so now its wait for a 2nd CT and after that probably a bronchoscopy and lavage.
But they all keep pointing to this weird stent in a weird location as a most logical origin.

Wait and see as usual.
If Dipshit Dake had done something about it when he knew it had already dislodged this would be a different conversation. It was easily removable back then. Now it is too major a risk.
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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Re: Notes from CureIous' at Stanford

Post by vesta » Sat Apr 27, 2019 6:36 am

CureIous wrote:
Sat Apr 20, 2019 5:58 am
Thats the problem, we're talking about a nickle titanium stent that was made for veins, not for the vasculature that directly feeds the lungs. There is some kind of really nasty looking inflammtory process upper right lobe that has them stumped so far, I've been tested for just about everything, all the usual suspects, from TB to Histo, candida and on and on.
My labs are perfect, at least as far as indicating something systemic in the blood. Pulmonary function tests good, cardiac echo ekg stress test all good, so now its wait for a 2nd CT and after that probably a bronchoscopy and lavage.
But they all keep pointing to this weird stent in a weird location as a most logical origin.

Wait and see as usual.
If Dipshit Dake had done something about it when he knew it had already dislodged this would be a different conversation. It was easily removable back then. Now it is too major a risk.
Greetings:

I think one needs to stop trashing Dr Dake and IRs in general who embarked on treating CCSVI with venoplasty. The treatment proved VERY successful for some (eg Jeff Beal) and you as well according to your post of April 2017. Yes, stent migration proved disastrous for some (2 ?) ) which put an end to placing stents in veins draining the head. If the MS treatment lobby hadn’t hysterically opposed the CCSVI theory/treatment, safe stents might by now be available. As it is, the problem of Venoplasty remains that the veins re-stenose. And I agree that one should consider other solutions than Venoplasty to free CNS fluid obstructions.

But Dr Zamboni’s core idea freed me to understand the fluid circulation factor in MS pathology. Did CCSVI IRs want to monopolize treatments ? Yes. Did they rush out to treat without considering that the obstructions might be exterior to the vein ? Yes. Did they hope to earn acclaim at finding a « cure » for MS ? Yes. Was greed their primary motive ? I doubt it. The fee was $10,000. That’s what it costs to have a baby in an American hospital. The whole USA health care system is devoured by greed. In fact, by embarking on an « experimental » treatment, the IRs were putting their livelihood at risk. Maybe you should be thankful to enjoy the benefits of Dr Dake’s intervention, and even ask why you yourself didn’t notice the missing stent ? We all have to assume some responsibility in our health care.

Keep in mind that if a MD prescribes a DMD which kills, that’s OK because his treatment conforms to the community standard. But if the CCSVI treatment injures you, you can find a greedy lawyer, working in league with the MS DMD lobby, to sue the IR. I hope you don’t have that in mind.

I hope as well that the stent remains stable and does you no harm. I thank
you in particular for alerting me to Dr. Owiesy’s work..

Best regards, Vesta

PS: Come to think of it, when Dr Dake showed you the images of the stents and you didn't notice the missing stent, he was protecting himself legally. This is called "informed consent". By not asking him to deal with the medical consequences of this displaced stent, you were "consenting" to do nothing about it. You can well be furious about that.

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Re: Notes from CureIous' at Stanford

Post by Cece » Mon May 06, 2019 8:03 am

Where is the migrated stent lodged? Not the heart but an artery feeding the lungs? I would be so mad, not at it happening but that you weren't informed and options considered back when there were options.

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Re: Notes from CureIous' at Stanford

Post by CureIous » Wed Nov 20, 2019 7:24 am

Cece wrote:
Mon May 06, 2019 8:03 am
Where is the migrated stent lodged? Not the heart but an artery feeding the lungs? I would be so mad, not at it happening but that you weren't informed and options considered back when there were options.
In the right pulmonary artery yes.
My pulmonologist said " wow I've never seen that before and there's nothing in the literature".
I know. We laugh at my 1 man randomized control trial. Of course the IR's just want to go in there and remove it which is stupid.
It has endothelialized for over 10 years now.
When I consulted with the proper vascular surgeon he recommended against it because to go in there and attempt to pull it out you would probably cause damage to that artery and I would have to have an emergency heart surgeon on standby to do in an emergency bypass should anything happen.
"Oh".
If if that bastard doctor Dake had simply owned it back then it was easily removed, now it is there for life and you hope nothing happens with it.
Again there is nothing in literature end of story the few stents that have landed there migrated from the legs and they were noticed immediately and removed immediately.
Like any professional would.
I have another doctor that at least wants to do a write-up on it will see how that goes he's a friend of mine
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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