2nd Annual CCSVI Symposium in NYC July 15-17

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

Would you be interested in attending a patient day without cost?

yes
38
81%
no
5
11%
maybe
4
9%
 
Total votes : 47

Postby silvercharged » Wed Jul 27, 2011 5:18 pm

Our procedure was done today. I am posting in this thread because our Doc was in NY for the meeting and came away with enough information to sell the procedure to our insurance company.

He gives credit to Dr. Sclafani.

If I violated protocol here, please forgive, it has been a long but very exciting day.
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Postby bestadmom » Wed Jul 27, 2011 5:27 pm

silvercharged wrote:Our procedure was done today. I am posting in this thread because our Doc was in NY for the meeting and came away with enough information to sell the procedure to our insurance company.

He gives credit to Dr. Sclafani.


WOW! A fringe benefit with a dollar value. Who would have guessed?
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Postby Cece » Wed Jul 27, 2011 6:06 pm

That's great news, silvercharged. I hope the procedure went really well too!
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Postby silvercharged » Wed Jul 27, 2011 6:11 pm

In our case the doppler nor the MRV showed anything conclusive. He was able to get approval for a venogram which showed a "significant" webb blockage in the left interior jugular which was addressed today.

:D
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Postby Cece » Wed Jul 27, 2011 6:31 pm

Your excitement is coming through loud and clear. Especially if you had no way of knowing if stenosis would be found or not!

I am more than willing to raise some applause for Dr. Sclafani, for putting on a heck of a show, and to your IR, for attending and getting the most out of it, and to your insurance company, for granting its approval!
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Postby drsclafani » Fri Jul 29, 2011 2:16 pm

Cece wrote:
I am more than willing to raise some applause for Dr. Sclafani, for putting on a heck of a show, and to your IR, for attending and getting the most out of it, and to your insurance company, for granting its approval!


The videos finally arrived in the office. I have to review them and i will begin to share them one every two days on you tube as soon as they can be posted. I will inform when that happens.

DrS
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Postby pklittle » Fri Jul 29, 2011 7:09 pm

drsclafani wrote:
Cece wrote:
I am more than willing to raise some applause for Dr. Sclafani, for putting on a heck of a show, and to your IR, for attending and getting the most out of it, and to your insurance company, for granting its approval!


The videos finally arrived in the office. I have to review them and i will begin to share them one every two days on you tube as soon as they can be posted. I will inform when that happens.

DrS


Yeah!! Thank you!
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Re: 2nd Annual CCSVI Symposium in NYC July 15-17

Postby Cece » Fri Oct 07, 2011 12:48 pm

I have yet to watch the vids but am extremely interested. Where is the time for everything! The vids can be found in individual threads here on TiMS or if you want to watch them one after the other, they are compiled on Dr. Sclafani's facebook page.
http://www.facebook.com/Sal.Sclafani.MD

I bumped this up because I ran across this summary of what was discussed at the AAC symposium in July.
http://ccsvicoalition.org/resources/ccs ... big-issues
More specific to CCSVI, it was clearly evident that with the growing number of procedures completed worldwide, standards of best practice and protocols are emerging. Having gone from an experimental procedure it has now entered a definitional stage that will see procedural standards emerge as well as patient selection standards. New procedural developments include the use of Intra Venous Ultrasound (IVUS) as well as some intriguing uses of stem cell therapy. Also, there was a call for more standardization and greater use of imaging before during and after the procedure. As to patient selection, this relates to the growing knowledge that there are various types of stenosis and each might require different treatment regimes or even no treatment at all. Restenosis treatment selection also was discussed. In summary, it is obvious that CCSVI procedural understanding is maturing and growing in sophistication.

Lots of interesting points here. I am not sure if procedural standards are emerging as a consensus. Maybe I am too close in, I am thinking of the differences that I know between different IRs techniques. Dr. McGuckin's patients, for example, tend to report him having found stenoses in multiple different veins. I keep hearing that they had five or six stenoses ballooned, which to me says that he may be using a broader definition of a stenosis than some other IRs, and also that he is including more veins. Some IRs use IVUS, some don't balloon high-up in the jugular. I think across the board the use of stents has come down, as has the use of extra large balloons. I would like to see the use of IVUS as part of standard procedures.

Patient selection! This has been worrisome to me, because I want all patients to be treatable, all stenoses to be fixed, and everyone to have a really good outcome. In the real world, this is not possible. But how do they determine who not to treat? We've already been privy to the debate over whether or not renal occlusions should be treated. Some IRs do not check for May Thurners. Then there is patient selection for re-treatment!
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Re: 2nd Annual CCSVI Symposium in NYC July 15-17

Postby Cece » Tue Dec 20, 2011 11:19 pm

drsclafani wrote:I wanted to have a live procedure broadcast, but thought it was not ready for prime time yet.

Something to look forward to for this next July?

(There was a live CCSVI procedure broadcast at the Venous Endovascular Forum conference in March, by Euromedic. I was trying to find the thread on that, and came across this instead. In the live CCSVI procedure broadcast at that forum, which naturally is available on YouTube, the doctor chose to balloon the innominate vein when the flow was slow after ballooning the jugular. I had been surprised by this, but now you mention checking these veins in the same scenario, when the jugular flow is still slow after treatment. Interesting.)
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