ISET 2012 now underway

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

ISET 2012 now underway

Postby Cece » Mon Jan 16, 2012 11:24 am

www.iset.org/
Just scanning through the program, I see this abstract presentation later today:

Complications and Safety of Jugular and Azygos Angioplasty in CCSVI Patients with MS
presented by Marco Magnano, M.D.

Who is Dr. Magnano? I will do a quick search AND rejoice in the fact that there are so many researchers investigating CCSVI that I am not instantly familiar with everyone's names. We've come a long way, baby....

Marcus Magnano, MD, University of Catania, Catania, Italy

Dr. Zamboni also gave a presentation yesterday called, "CCSVI: Imaging Protocol with Duplex."

It's not until Thursday that we get some real discussion of CCSVI. Apparently there are such things as renal denervation, aneurysm repair, carotid stenting, coronary repair, etc, etc, that are all scheduled first....
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Advertisement

Patients report controversial MS treatment improves their li

Postby MSUK » Tue Jan 17, 2012 12:36 am

Image

Although using angioplasty to treat multiple sclerosis (MS) is highly controversial, sufferers often insist it helps – in some cases dramatically, such as allowing them to walk without a cane.

Patients with less severe MS also reported additional quality of life improvements, such as being able to talk more clearly, after having treatment to open blocked blood vessels in the chest and neck, according to research being presented at the 24th annual International Symposium on Endovascular Therapy (ISET).

A controversial theory holds that MS symptoms may be caused by narrowed veins leading away from the brain, which interrupts blood flow between the brain and heart. This condition, called chronic cerebrospinal venous insufficiency (CCSVI), is treated with minimally invasive angioplasty to open up those narrowed veins. In the research being presented at ISET, more than 65 percent of patients treated for CCSVI report quality of life improvements three months after treatment.... Read More - http://www.msrc.co.uk/index.cfm/fuseact ... ageid/2954
MS-UK - http://www.ms-uk.org/
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Re: ISET 2012 now underway

Postby Cece » Tue Jan 17, 2012 9:34 am

Thanks squiffy!!

Study results from the abstract that Dr. Magnano presented on yesterday:
“The patients reported improvement in common MS symptoms such as brain fog, frozen extremities, dizziness, bladder control and speech, and over time, they continued to improve,” said Marco Magnano, M.D., professor of interventional radiology at the Residency of Vascular Surgery of the University of Catania, Sicily. “Although this could be due to the placebo effect, you have to wonder how that alone could help patients get out of the wheelchair, or forgo a cane or crutches.”

In the study, 170 patients were evaluated using both disability and quality of life questionnaires. On the disability questionnaire (out of a scale of 0 to 10, with higher numbers indicating more severe disability), patients scored on average of 4.5. Three months after treatment, they improved to an average of 4.0. The patients who initially scored higher on the disability scale were less likely to improve. The other questionnaire asked patients 16 quality of life questions on activities such as recreation and socializing, with answers ranging from 1 (terrible) to 7 (delighted). Out of a total possible score of 112, patients overall improved from 64 before treatment to 70 after one month and 71 after three months.

QOL improvements and also EDSS improvements of 0.5 after 3 months.
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Re: ISET 2012 now underway

Postby Cece » Tue Jan 17, 2012 10:28 am

There are some sessions on renal angioplasty later today. One of the presentations is on renal in-stent restenosis and another is renal salvage stenting. I am guessing they are referring to the renal artery and not the renal vein. Pshaw, arteries. Veins is what we want to hear about....

Yesterday there was not just the one abstract on CCSVI but a second one as well, both from Dr. Magnano. If I'm recalling correctly, one was on the study and improvements and the other was on safety.

Here they both are:
QOLs and EDSS Variations After PTA in 170 MS-CCSVI Patients
Abstract Presenter: Marco Magnano, M.D
Complications and Safety of Jugular and Azygos Angioplasty in CCSVI Patients with MS
Abstract Presenter: Marco Magnano, M.D

On Sunday, there was also this:
Panel Discussion: Controversies in Venous Testing: CCSVI, Overutilization of Venous Duplex, Accuracy of Exams and Follow-up Protocols

Panelists: Jose Almeida, M.D., James Benenati, M.D., Carol B. Benson, M.D., Nicos Labropoulos, M.D.,PhD, Thom W. Rooke, M.D.

CCSVI is always grouped in with the controversies! I look forward to the day when it is not, when it is proven and standard and obvious in retrospect.
This seems specifically to be about the controversy in venous testing, so the usual Doppler vs MRI and if there is a methodology difference that could explain why some researchers find CCSVI and some don't.

Today's final session, "Neurointervention for the Nonneurointerventionalist," would have much relevance to CCSVI if they were to talk about stenting in the venous sinuses. Here's a presentation: "Best Medical Therapy versus Intracranial Stenting" but I would expect it to be arterial or stroke-related information.

ISET is no ISNVD....no specialty focus on CCSVI! We'll get that in February!
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Re: ISET 2012 now underway

Postby Cece » Tue Jan 17, 2012 11:01 am

Biodegradable Stents: Is Nothing Left Behind the Answer?
Speaker: Ron Waksman, M.D.

There's a presentation tomorrow on biodegradable stents, but biodegradable stents are still in trials and not manufactured in the larger sizes we'd need for the jugulars.

Here's something on drug-eluting balloons, another option we've discussed here:
The Thunder Trial: Do the Initial Hopes of Drug-eluting Balloons Persist?

Speaker: Gunnar Tepe, M.D

On Thursday, we've got this coming up, and in a glimmering ballroom:
Wake-up Call VIII: Vascular Malformations

Glimmer Ballroom 4

7:25 AM Case Presentation

Case Presenter: Ziv J. Haskal, M.D.

Does Dr. Haskal focus on any other vascular malformations besides CCSVI? It would be nice if this were a CCSVI presentation.

And then comes the CCSVI session:
Session XVI: CCSVI

8:00 AM CCSVI Today: Unanswered Questions
Speaker: Paolo Zamboni, M.D.

8:10 AM CCSVI: Making Collaboration Work
Speaker: Jack Burks, M.D.

8:20 AM What's New in Diagnostic Methodologies?
Speaker: Paolo Zamboni, M.D.

8:30 AM Imaging Evaluation of CCSVI Patients
Speaker: Lindsay Machan, M.D.

8:40 AM Outcomes of a Single-center Experience
Speaker: Gary Siskin, M.D.

8:50 AM Technique and Pitfalls of Intervention for CCSVI
Speaker: Gary Siskin, M.D.

9:00 AM Anatomic Challenges in CCSVI
Speaker: Ziv J. Haskal, M.D.

9:10 AM Ongoing Research Initiatives
Speaker: Barry T. Katzen, M.D.

9:20 AM Current Status of CCSVI in Canada
Speaker: Lindsay Machan, M.D.

9:30 AM Panel Discussion
Moderator: Barry T. Katzen, M.D.
Panelists: Jack Burks, M.D., Michael Dake, M.D., Lindsay Machan, M.D., Gary Siskin, M.D., Paolo Zamboni, M.D.

10:00 AM
Refreshment Break

What is new in diagnostic imaging, Dr. Zamboni? Can't wait to hear. Dr. Burks has not given up on the idea of multidisciplinary collaboration, aka getting along with neurologists! Dr. Siskin gets to talk about outcomes at his clinic and then about techniques and pitfalls. It would be nice if he were coming around to the use of IVUS in his techniques, with a pitfall being failure to use IVUS! But he has much experience with treating CCSVI patients, as well as a trial underway. Can't wait. Dr. Haskal discusses anatomic challenges in CCSVI, what does that mean exactly? Sadly Dr. Katzen may well be able to cover the ongoing research initiatives in his slated ten minutes, because there is not enough research underway, which means the discovery process gets dragged out and the conclusive proof we need is pushed further into the future. It's interesting that the current status of CCSVI in Canada is discussed, because that seems to be political, and most of the ISET conferences is about specific techniques and sharing images and trial results. And, finally, a half-hour panel discussion featuring some great names: Dr. Burks, Dr. Dake, Dr. Machan, Dr. Siskin, and Dr. Zamboni.

Thursday is the big day at ISET. :)
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Re: ISET 2012 now underway

Postby masci » Tue Jan 17, 2012 12:27 pm

Cece, Marco Magnano is an IR of Catania in Sicily. He works for a fee and following CCSVI for about a year. In Catania there are 3 other public hospitals, which operate at no cost to patients. 2 of these hospitals will participate in Brave Dreams.
I am Matteo Scibilia, president of a small group CCSVI (www.ccsviitalia.org), which has contributed so Catania became the Italian city where 4 different hospitals (3 public and 1 private) working for the PTA.
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Re: ISET 2012 now underway

Postby PointsNorth » Tue Jan 17, 2012 4:57 pm

The state of CCSVI in Canada should be addressed by Dr. Siskin who will be heading up our first trial in March. Not much else to talk about ? . . .
Albany 2010. Brooklyn 2011
Hurry up and wait.
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Re: ISET 2012 now underway

Postby Cece » Tue Jan 17, 2012 6:15 pm

Masci, thanks. It is curious that Dr. Magnano is not one of the ones who will be participating in Brave Dreams. He has gained expertise with the procedure. It was not a small number of patients treated in his study...let me check...170 patients.

It sounds too like I should remember the name Catania! That is a great deal of CCSVI hospitals in a single city.

PN, too true.... I don't understand the delay at the national level. Of course I also don't understand the absolute radio silence on CCSVI here in the US. No funding from the US government for CCSVI research.
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Re: ISET 2012 now underway

Postby masci » Wed Jan 18, 2012 2:34 am

Cece, Dr. Magnano Brave Dreams can not attend, because he works in a private clinic: in Italy it is not allowed. Instead the other 2 hospitals are the University Hospital (Prof. Veroux) and Cannizzaro Hospital (Dr. Cacciaguerra + dr. Patanè), also with great experience CCSVI.
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Re: ISET 2012 now underway

Postby Cece » Wed Jan 18, 2012 1:13 pm

Cece wrote:
7:25 AM Case Presentation

Case Presenter: Ziv J. Haskal, M.D.

Does Dr. Haskal focus on any other vascular malformations besides CCSVI? It would be nice if this were a CCSVI presentation.

Alas, Dr Haskal does do other things besides CCSVI, such as AVMs (arteriovenous malformations), as shown in an image from tomorrow's presentation:
http://www.pageturnpro.com/CustomNEWS/3 ... ex.html#/4
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Re: ISET 2012 now underway

Postby Cece » Wed Jan 18, 2012 1:26 pm

Dr. Ron Waksman presented on understanding restenosis, which is a relevant topic for us. And in looking into his background, he's been researching restenosis for years. Here's a paper on "edge stenosis" from 2003: http://onlinelibrary.wiley.com/doi/10.1 ... x/abstract Here's an interview with Dr. Waksman in which he says that if you do IVUS for most of your patients, you're going to end up with better results: http://www.ptca.org/ivus/waksman.html I would love for Dr. Waksman to take an interest in CCSVI and in particular the issues with restenosis in CCSVI, with or without stents. I'd bet he'd have some thoughts to contribute. He also presented on biodegradable stents.

Dr. Dake is presenting today, but not on CCSVI:
1:50 PM ZILVER PTX Trial Results: Is this a Game-changing Technology?
Speaker: Michael Dake, M.D.
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Re: ISET 2012 now underway

Postby Cece » Wed Jan 18, 2012 1:42 pm

If you ever see something called "Pedal Access," and you think, what's that? Don't click. Horrible images of half-gone feet. Diabetes.
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Re: ISET 2012 now underway

Postby dmkfl1 » Mon Jan 21, 2013 9:11 am

I'm a 46 y/o male with RRMS. I was dx some 10 years ago. I started with a phone call to Dr. Katzen at Baptist hospital Miami. It turned out that I had all the required test completed and my procedure was set. I was laying on the table under this very nice, well versed on the ccsvi topic doctor praying for a miracle. The staff from the time I came in was nice and kept me calm. As he probed through the veins with camera he finished up and came to the side of the table. It was discussed that he found no blockages. I'm going to contact him and see if there could have been something that was missed as it was an early time in the study. Maybe something has been uncovered or learned. Maybe I'm grasping at straws but the MS is progressing and it has me in a panic. I pray this doctor is available for me and I can get what all is calling "liberated" and I at least keep it at bay from worsening for some years. If anyone has any advice for me or for me to let the doctor know please let me know.
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Re: ISET 2012 now underway

Postby dania » Mon Jan 21, 2013 10:34 am

dmkfl1 wrote:I'm a 46 y/o male with RRMS. I was dx some 10 years ago. I started with a phone call to Dr. Katzen at Baptist hospital Miami. It turned out that I had all the required test completed and my procedure was set. I was laying on the table under this very nice, well versed on the ccsvi topic doctor praying for a miracle. The staff from the time I came in was nice and kept me calm. As he probed through the veins with camera he finished up and came to the side of the table. It was discussed that he found no blockages. I'm going to contact him and see if there could have been something that was missed as it was an early time in the study. Maybe something has been uncovered or learned. Maybe I'm grasping at straws but the MS is progressing and it has me in a panic. I pray this doctor is available for me and I can get what all is calling "liberated" and I at least keep it at bay from worsening for some years. If anyone has any advice for me or for me to let the doctknow please let me know.
Get your Atlas checked and maybe an upright Fonar MRI? See if your CSF flow is compromised.
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Re: ISET 2012 now underway

Postby Cece » Mon Jan 21, 2013 12:34 pm

Good luck and I am sorry to hear your MS is progressing.
I think it is worth pursuing CCSVI further. Maybe with a different doctor because the imaging might be interpreted differently. But you definitely want to be seen by someone with CCSVI experience. Am I understanding right that you had the full venogram with a catheter inserted into the veins? Do you have copies of the images? A more experienced eye (and CCSVI IRs are more experienced now than they were in the early days) might see something that was missed. There's also a lot of support around here for the use of intravascular ultrasound (IVUS) during the procedure since it gives a close-up image that may show a blockage that was otherwise missed.
When you had the required tests completed, did the tests show that you had CCSVI?
Do you have some of the specific symptoms of CCSVI? Over in Dr. Sclafani's thread, I posted his description for a professional workshop he is leading. Let's see...
CSVI is a clinical syndrome resulting from outflow resistance of the veins that drain the brain and the spine, presenting clinically with chronic fatigue, short term memory loss, problems of concentration and complex thinking, headaches, spasticity and vision deficiencies and treated with some success by venoplasty and valvuloplasty.

I had pretty much all of those symptoms! And improvements afterwards.
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