ISNVD 2017 in Italy

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

Re: ISNVD 2017 in Italy

Postby Cece » Thu May 11, 2017 8:01 pm

https://twitter.com/search?q=isnvd&src=typd

some tweets about ISNVD

What does this one mean?
Veroux: compliant venous scaffold for treatment of impaired venous outflow from the brain. #ISNVD #CCSVI


And does "frequency of neck vessels" mean we literally have more veins in our necks? That would be interesting, probably due to collaterization, the blood flow needing the alternate routes. Or the word "blockages" was left out and it's a higher frequency of neck vessel blockages.
Dejan Jakimovski: Higher frequency of neck vessels in #MultipleSclerosis patients - assoc beyond BMI, age & gender influence. #ISNVD #CCSVI


I like the mention of the thorax since due to its placement, its functions have to be affected by the slowed flow and the collaterals. I like that familiar names (Dr. Dake, Hector Ferral, etc) are still involved.
Dake: clinical presentation & treatment of delayed venous outflow of thorax & neck #ISNVD


Dr. Zamboni introduces the first venous stent specifically made for CCSVI. Other than size, what would be the change? Is it angled to prevent displacement? Is it coated?
#ISNVD: presentato il primo "stent" per le vene, creato all’Università di Catania - Meteo Web http://po.st/5jcWBO via @MeteoWeb_eu



How was the hypercapnia and hypoxemia measured?
Petrov: hyercapnia & hypoxaemia w/ impaired venous blood draining & sig improvement after endovascular treatment in p/- #CCSVI #ISNVD


Left renal vein stenting is an effective method to improve spinal cord blood flow. Okay, if it is an effective method, and if it can be stated what the benefit of improved spinal cord blood flow is, then that should be convincing.
Sclafani: left renal vein stenting is an effective method to improve spinal cord blood flow. #CCSVI #ISNVD
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Re: ISNVD 2017 in Italy

Postby Rogan » Fri May 12, 2017 7:45 am

Cece,

This is great news. Stent money will come into this space.

Dr. S Raju needs a special stent for where the Illiac and other veins converge.

Money will come into this space soon!
Last edited by Rogan on Fri May 12, 2017 7:56 am, edited 1 time in total.
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Re: ISNVD 2017 in Italy

Postby Rogan » Fri May 12, 2017 7:46 am

Just been extremely inspired watching ISNVD 2017 ITALY presentations by Dr. Dake and Dr. S Raju.
These are doctors that care about helping sick or dying people.

The history Dr. Dake gave of putting stents in people’s neck veins because they were dying on his operating table is amazing. I didn’t know what a pioneer he was.

He talks about folks that were getting routine heart operations whereby the patient’s neck jugular just clogged up for whatever reason. He just went in there to save the person’s life by placing a stent.

There was no FDA there to tell him no. He was trying to save someone’s life. Watch his presentation.

Thank god the FDA doesn’t get into every OR in the country and shut down surgeons who save dying peoples lives.
Oh what did Dr. Dake discover? That he could stent veins and save lives. Amazing man.
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Re: ISNVD 2017 in Italy

Postby Rogan » Fri May 12, 2017 8:00 am

So inspired listening to Dr. S Raju I have to transcribe some things he said.

He mentions why healthy people have CCSVI and no MS.

He mentions like 5 different organs and diseases whereby you can have one fatal flaw but be healthy. Two and you get sick.
He mentioned congested heart patients that are fine until they develop and aneurism. Then heart attack. On and on.

Amazing Doctor. Thank you for treating people and trying to restore blood flow to the brain.
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Re: ISNVD 2017 in Italy

Postby Cece » Fri May 12, 2017 6:52 pm

Keep sharing, Rogan, this is all good stuff.
He mentions why healthy people have CCSVI and no MS.

He mentions like 5 different organs and diseases whereby you can have one fatal flaw but be healthy. Two and you get sick.
He mentioned congested heart patients that are fine until they develop and aneurism. Then heart attack. On and on.

You would still expect the incidence of CCSVI to be greater in MS patients but not to be exclusive to MS patients.
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Re: ISNVD 2017 in Italy

Postby CureIous » Fri May 12, 2017 7:02 pm

lol. the patent ignorance and short term memories on this thread are appalling.

Dake and his careless wanton placement of stents ad hoc caused as much harm as good.

Unfortunately there is no cure for being starstruck.


You would all think differently if you had straight out been lied to your face to protect the empire.

Sorry, but that's a deal breaker. Want proof? Be more than happy to post my reports from 2009. Yeah, wayyyy back then. Just say the word, my records my choice.

Don't get sucked in by all this bs hype. IR's care about procedures and profits first, patients second.
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: ISNVD 2017 in Italy

Postby Rogan » Sat May 13, 2017 10:31 am

Sorry Curious.

I would think being symptom free was a good thing.

Sorry I can't recall your posts from 2009. I will try to look them up.

Best of health to you.

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Re: ISNVD 2017 in Italy

Postby CureIous » Sun May 14, 2017 9:37 am

Rogan wrote:Sorry Curious.

I would think being symptom free was a good thing.

Sorry I can't recall your posts from 2009. I will try to look them up.

Best of health to you.

Rogan


Most of what you see online insofar as all this stent nonsense is concerned is cherry picked b.s. and I assure you, if you knew the entire unvarnished truth your attitude would be different.

This is not sour grapes, nor regrets over some perceived slight, or some sort of personal beef, life's too short for that. Goes much much deeper than that. Goes to integrity, professionalism, or lack thereof. Ethics, or lack thereof, and number one at least on my list: patient safety, FIRST DO NO HARM.

That has all gone out the window in favor of profits, legacy, and CYA big time.

I assure you if you had been so expertly lied to as I had and didn't find out about it for 7 or 8 years you would think differently.

The Hollywood production continues.

I can back up every word. Shame on me for not lawyering up years ago, don't give a damn about $$, it's never been about that. Never will. What I speak of is with authority, not guessing, nor observing from afar. It's not opinion either. Look, this crap cuts right across the entire facade, all one big happy family the jetset crowd, making cute videos about the latest stents, puhleeze.

At this point though it is so much shouting into the wind. Just a shame people don't know the truth, and the facade gets a Hollywoodesque redo every 6 months or so.

If you only knew.
.
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: ISNVD 2017 in Italy

Postby vesta » Mon May 15, 2017 9:26 am

CureIous wrote:
Rogan wrote:Sorry Curious.

I would think being symptom free was a good thing.

Sorry I can't recall your posts from 2009. I will try to look them up.

Best of health to you.

Rogan


Most of what you see online insofar as all this stent nonsense is concerned is cherry picked b.s. and I assure you, if you knew the entire unvarnished truth your attitude would be different.

This is not sour grapes, nor regrets over some perceived slight, or some sort of personal beef, life's too short for that. Goes much much deeper than that. Goes to integrity, professionalism, or lack thereof. Ethics, or lack thereof, and number one at least on my list: patient safety, FIRST DO NO HARM.

That has all gone out the window in favor of profits, legacy, and CYA big time.

I assure you if you had been so expertly lied to as I had and didn't find out about it for 7 or 8 years you would think differently.

The Hollywood production continues.

I can back up every word. Shame on me for not lawyering up years ago, don't give a damn about $$, it's never been about that. Never will. What I speak of is with authority, not guessing, nor observing from afar. It's not opinion either. Look, this crap cuts right across the entire facade, all one big happy family the jetset crowd, making cute videos about the latest stents, puhleeze.

At this point though it is so much shouting into the wind. Just a shame people don't know the truth, and the facade gets a Hollywoodesque redo every 6 months or so.

If you only knew.
.


So what was the lie? Why be so cryptic? If there is something to say, do please say it.
Regards, Vesta
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Re: ISNVD 2017 in Italy

Postby CureIous » Thu May 18, 2017 2:16 pm

Not being cryptic at all. Most the info is right here, either on my thread or this one.

Fact is no one really cares, and I care little myself to bother posting the particulars, which will make little difference at this point. If anything I may write to Stanford, still mulling that over. Not as if I have to name names now do I?

Fact is, Doctors will flat out lie to your face when it comes to protecting their empire, or telling the truth, that's what lawyers are for, to make them tell the truth.

All these other bit players running around starting nonprofits don't count, they are just there to keep the facade going. If only you knew....
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: ISNVD 2017 in Italy

Postby ThisIsMA » Fri May 19, 2017 7:24 pm

To change the subject: Cece, Cheerleader, Rogan, others?

I had been hoping there would be new information about Dr. Zamboni's Brave Dreams trial presented at the ISNVD 2017 Conference, and that we would learn about it here on ThisIsMS. Any news on this? Will a summary or more highlights of the conference presentations be posted?

I hope ISNVD publishes a summary for patients, or that somehow us patients we will be clued in on any new CCSVI related science that was shared at the conference.

I know science is slow and there can be blind alleys, but I remain hopeful and its so nice to learn about any new science that offers a glimmer of hope. :-)

M.A.
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Re: ISNVD 2017 in Italy

Postby Cece » Sat May 20, 2017 3:07 pm

ThisIsMA wrote:To change the subject: Cece, Cheerleader, Rogan, others?

I had been hoping there would be new information about Dr. Zamboni's Brave Dreams trial presented at the ISNVD 2017 Conference, and that we would learn about it here on ThisIsMS. Any news on this? Will a summary or more highlights of the conference presentations be posted?

I hope ISNVD publishes a summary for patients, or that somehow us patients we will be clued in on any new CCSVI related science that was shared at the conference.

I know science is slow and there can be blind alleys, but I remain hopeful and its so nice to learn about any new science that offers a glimmer of hope. :-)

M.A.

I haven't any information, I'd like to know those things too. Prior to being part of the CCSVI movement, I had no idea science could be as slow as this has been.
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Re: ISNVD 2017 in Italy

Postby Rogan » Sat May 20, 2017 7:02 pm

Dr. Zamboni in his presentation stated that the Brave Dream trial results had not been ready for publication. He made it sound like they were coming soon.

The trial size was smaller than they hoped. Maybe 450? But had I believe good data on 150 folks over 3 or 4 years?

Look forward to the info. Everyone looking into this discusses how varied we all are when it comes to brain flow dynamics.

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Re: ISNVD 2017 in Italy

Postby Cece » Sun May 21, 2017 6:23 pm

Rogan wrote:Everyone looking into this discusses how varied we all are when it comes to brain flow dynamics.

Yes! All the variations, with the similarity being slowed blood flow, whether it's from a valve blockage, an external compression, a hypoplastic jugular, etc, etc.
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Re: ISNVD 2017 in Italy

Postby ThisIsMA » Mon May 22, 2017 8:33 pm

Cece wrote:
I haven't any information, I'd like to know those things too. Prior to being part of the CCSVI movement, I had no idea science could be as slow as this has been.

Hi Cece,

Thanks for your reply. I agree. It seems like an eternity since I first learned about CCSVI, shortly after I was diagnosed. I would have thought we would have more answers by now. Its very frustrating.

I'm so glad that ISNVD exists though, and that our dedicated researchers are continuing to work on the science.

Also Rogan: thank you for your posts about other parts of the ISNVD conference. It was great to be able to read that information!
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