This Is MS Multiple Sclerosis Community: Knowledge & Support

ciao paolo

As you can see by the attachment, yesterday's symposium at SUNY Downstate was a great success. The intention was to show lots of cases to the interventionalists and it exceeded my expectations. Ivo Petrov from Sofia, Tariq Sinan from Kuwait and Gary Siskin from Albany New York were masterful in speaking to the proceduralists. Each gave a very sophisticated presentation and each had a unique and noteworthy perspective, some very different solutions to problems and excellent results. The images, as I have said to you before, really help the interventionalists understand what is wrong. Mark Haacke elaborated on his methodologies for imaging CCSVI by MRI. An added benefit was Mark's opportunity to see many catheter venograms. He expressed to me that he can now recognize more readily additional findings on MRV; and David Hubbard presented his interesting observations on functional MRI before and after liberation. Michelle Brown of Connecticut spoke on patient advocacy. Fabrizio was better than ever. His presentation was so much more polished than the first time I heard him in Ontario. He really put things in perspective. A great introduction to CCSVI for an audience curious and unfamililar with the entity. Balanced, intellectual, sophisticated. I was proud to announce them, humbled by their generosity and amazed by the quality of their work.

It was lively, controversial and very much appreciated by all the audience, which came from many states in US, Canada, Mexico, and Costa Rica. The presence of the patients allowed the doctors to see up front what it means to have MS. Astounding, considering that I decided to do this four weeks ago. I think a New York summer symposium of one or two days could become an annual event for a while. What do you think?

Several doctors asked me about setting up a registry. When I visited Ferrara, I signed up for your registry, but have not heard anything about it since then. So I ask if the registry is real and will be active. Many doctors would like to participate, i think. It would be best to start to capture data soon.

By the way, on September 9, I will be giving an invited lecture to the Chinese Society of Interventional Radiology to celebrate my induction as the first Honorary Member of that Society. Tell me....Do i have the honor of giving the first lecture on CCSVI in China, or have you already done that?

Best wishes for the rest of the summer.


Sal

Great letter...

Will you be heading to Shanghai?

I am sitting here with a great big smile on my face having read Dr Sclafani's letter to Dr Zamboni. I am just so happy this is happening right now with these doctors who are sharing with US the patients. It's nice as a patient to feel on the inside instead of the outside. Thank you.

ozarkcanoer

Dr. S. -

I apologize if this has been asked before, I've read this thread as it has unfolded and a lot of time has elapsed between page 1 and 188 - Wow!

When you do the venogram, are you also looking at the veins inside the brain for any abnormalities? If so, do you have any idea how often people with CCSVI or symptoms of it also show twisty/screwed up veins inside the brain?

Finally what can be done it they do?


Thanks for all you do!!

Saint Louis a Venogram, does not look inside the head or Brain, it goes through the Femoral vein up through the heart the right atrium the Asygos
then into each Jugular vein......nothing to do with the head or Brain....Dr Haacke has written a program to measure Iron deposits in the Brain via an MRI and SWI ....perhaps this is confusing you.

Dr. S.

I first became aware of CCSVI in early December, 2009. I had gone on disability from my job for the last time 6 months earlier. I was trying to accept the fact that this is the way I would be - and worse - for the rest of my life. So far drugs had done nothing for me and I couldn't imagine a drug being available in my lifetime that would fix things. People like you and Dr. Zamboni have brought back hope to a lot of people. My procedure is scheduled August 24th. I am a little scared, but very excited. I will be happy with small improvements. I just want to thank you and all the others who have made this their life's mission. You haven't caved into the opposition, the naysayers and disbelievers. Because of you and your colleagues the lives of many people will improve. No question - just THANK YOU!

Great letter Dr. Sclafani and it was a great event!!!

What are your thoughts for adding a west coast event so that more Doctors can be reached?

First - thank you Dr. Sclafani for being such a patient, generous and willing teacher and advocate. All of us who have been touched by MS will be forever in your debt.

My close friend is ready/willing/able to have another balloon procedure done if he restenoses. I’m a worry wart (my ex had an angio—it didn’t go well……) about stuff going wrong, but also about the radiation from multiple procedures. Is there any risk to having more than one procedure, either from radiation or from having a wire travel through your veins over and over? How many times can he have this done?

gratefully,
msrelly

Dr. Sclafani, congratulations and thank you for the wonderful symposium!! You are a gem.
I just reread the Omar Khan (and 10 other docs'!) "Point of View" article on CCSVI and MS in the March Annals of Neurology, and I'm steaming anew. But I have a better understanding of WHY so many neurologists are closed-minded to CCSVI. THIS article is probably ALL they've read about CCSVI - yikes!

I've sent your July Endovascular Today article to some of my local neurologists, but I'm not sure they'll even read it! So, my question (finally!): Are there any plans that you know of for the CCSVI docs to rebut that opinion article, point by point, in that same magazine? Seems like the perfect first job for the new International Society for Neurovascular Disease (may have that name wrong)!!

Also, is there a way to put more of the human face into or alongside this type of article? Include case reports and anecdotes? More details on actual physical, cognitive, emotional improvements? Yes, I know these aren’t considered EVIDENCE…aarrgh. (Though I'd argue they're proof of concept, the old "placebo effect" would undoubtedly be invoked) Reading such articles as the Khan one, where the clinical improvements are all but dismissed amid study criticisms, I come away feeling that the people with MS are almost beside the point; that all that matters are number and locations of lesions, or type of blood flow, etc. It’s ALL about the disease process, while the patient’s quality of life (which is PARAMOUNT to the patient) is all but ignored.

Lastly, I’d certainly like to see an opinion to the contrary of the neurologists’ conclusion that “invasive endovascular procedures … should be discouraged until there is conclusive evidence to justify their indication in MS”.

Is help on the way?? (To recap: Plan for rebuttal piece? Include quality-of-life data or anecdotes? Conclude that treatment is appropriate NOW in certain cases? (benefit/risk assessment)?

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CCSVI:  Making Sense of MS

Greetings all! Congrats on the fabulous article and the success of the symposium Dr S.

This a repeat of a question submitted last week... Some questions I have found answers for in the last few days.

To stent, or not to stent, that is the question.

Some friends and I pooled our question lists:
- is there a certain type and location of stenosis that tends to predict the need for a stent?
- need for blood thinners after a stent – how long for? Low-dose aspirin for life?
- Is there an inflammatory process at the site of the stent?
- What happens to a stent as it ages?
- What is the life span of a stent?
- What is the longest a stent has been in place in a jugular vein (non CCSVI use)
- Are there alternatives for stents (e.g. cutting balloons) as a tool to prevent re-stenosis?
- Can you restonose w a stent in place? Yes


I just got the results of my Doppler (done at BVI in Ontario) and I am 5/5. Angela who does the tests at BVI trained in Italy with Zamboni’s team. I’m still flabbergasted.

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CIS 1985, Benign 1990, SP 2000

Maybe George Clooney as 'Sal Sclafani'?

Congratulations on your induction into the Chinese Society of IR. And on a successful symposium.

We have talked about registries before, but it has been awhile: what use do you see in a registry and in registry studies?

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"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition

I vote for Robert De Niro to play Dr Sclafani !!!

ozarkcanoer

no shanghai this time.

guangzhou slightly north of hong kong on the mainland is where the meeting is and i will spend a couple of days in macau

No, that is not currently part of the program.