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ccsvi

CAN SOMEONE EXPLAIN WHAT EXACTLY IS THIS? SOME PEOPLE ARE SEEKING TREATMENT IN NEW YORK..
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620048 tn?1358018235
I dont know about anyone else, but i do find this very interesting..the part i can understand.

But I cannot even begin to understand most of what you are talking about and I am sure I am not the only one....

meg
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Avatar universal
You are skeptical about my numbers. I was told them by Dr. Stinsin, interventional radiologist, last week. Yes, they have done over 1000 procedures to date. They are doing prospective and retrospective studies. They are pooling data with the other centers. In their experience, the results are 1/3.1/3, and 1/3 as I've stated. They follow their patients every 3 months with an ultrasound to see if there is re-stenosis. Those in the Dr. Mehta (Albany Vascular Group) studies are being followed with neurologicals, etc. How often do you get an MRI from your neurologist? I go to an MS treatment center - the neurologist relies more on how you feel and function for MS evaluation.  Dr. Stinson says his patients feel much better (2/3 lucky ones). BNAC did the most extensive study of my brain to date. I spent over 2 hours in an MRI to measure iron and the extent of the disease. If this procedure relieves the iron build-up I'll be happy. Iron leads to free radical destruction of tissues and the brain ages much faster. It may have nothing to do with MS, but senescence is a problem I'd like to head off. I have published in peer reviewed journals. It takes 3 years to get into print, sooner for internet publications - if you are lucky. Conference papers are more current, but much of the data analysis is now pooled and being sent to a third party to prevent bias. Everyone I've talked to says they will know much more at the end of 2011.
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398059 tn?1447945633
From your reply I can see you are dealing with the stint and coating issues;  I assume someone responsible for the procedure will be following your case and dealing with any issues.

I understand talking with a cardiologist is a good idea.  What feedback on the 100 procedures they have already done and what they have learned by doing them?  What I mean is have they improved on past procedures done?
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Avatar universal
The previous post wasn't really about my skepticism - I was just relaying what BNAC had reported from their study.  And the results weren't anything close to what Dr. Zamboni had reported.

I happen to think CCSVI is an interesting idea, that should be investigated.  I think it's great for anyone participating in the studies. As of July, I think the Albany group had done less than 100 procedures, so I can't see how they are up to more than a few hundred.  And I have seen those 1/3 numbers quoted frequently, and it seems like they are being taken as gospel.  The problem is, there isn't much info behind them (what were the improvements, were they based on neuro exams, etc.).

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Avatar universal
I am seeing my cardiologist next week. In case I need a blood thinner for a stent, I am asking for a prescription for Pradaxa (Boehringer) - it does not require monitoring to ensure a safe and effective dose. I waited 6 months to get the procedure done at Albany because I promised BNAC that I would go to a center that pooled data with them. Their database last summer was 1,400 for the diagnostic studies, and Albany has done over 1,000 of the procedures. Poland has done more than 400. Dr. Drake at Stanford had one unfortunate patient emergency with the stent dislodged. His IRB shut down his study. There are always risks and benefits. I will do anything to save my vision - it is like an old tv's with the bunny ears - some days reception are better than others. By the way, my cardiologist is excited for me. He has relatives with MS and knows are important the research is. I paid $7000 to have the BNAC diagnostics. Someone has to be the guinea pig so the science improves. Conventional MS therapies have not been effective for me. Physical therapy and exercise were the most important therapies after my last relapse. I am going to my Zumba class now...two years ago I needed a cane.
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398059 tn?1447945633
Do keep us up to date on your results.  My concern would be the veins ability to hold a stent and the coagulation around a stent.  Seems their is difficulty in regulation of blood thinners.

Is this procedure well developed enough?
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Avatar universal
I understand your skepticism about CCSVI. I am scheduled for January 7, 2011 at Albany Medical Center for my first treatment. CCSVI is real, and it may not be related to Multiple Sclerosis. Little is known about veins - they are the stepchildren of vascular science. Veins are far more variable that arteries. The Albany group has done over 1,000 angioplasties. So far, 1/3 get markedly better, 1/3 see some improvement in symptoms, and 1/3 get no result. This is a far better track record than any disease modifying treatment on the market today.  The double-blind study is currently recruiting at Albany. We will get unbiased answers by the end of 2011. BNAC is using the doppler and Hubbard (Oregon) is using the fMRI for diagnostic evaluation. Interventional radiologists will tell you that neither are really showing the extent of CCSVI as the colateral circulation may be far more extensive than can be seen by these techniques. That is why BNAC's %'s initital results are lower. When I spoke to the BNAC researchers in June they told me as they improve the Doppler procedure the numbers go up. I met a lady at Albany who had the procedure 3 times, she is out of her wheelchair and using a walker. I do not want to wait because the symptoms that may improve are the one's I have. I know that I will have to be monitored and have additional treatments as the science gets better. There is now a 2 year waiting list at Albany, unless you want to participate in the double-blind study.
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Avatar universal
I would be careful here.  I don't think BNAC has officially published any of their studies, but they did present them at ECTRIMS:

http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=4057
(You have to scroll down the page to see the summaries).

It looks like they have undertaken a number of studies, but the large investigational study of 500 people did not find (anywhere near close) CCSVI in 100% of people.  Depending on how the data is grouped, the occurrence was about 56-62% in MS patients, and 25% in controls.  Dr. Zivadinov's presentation to the NMSS can be found here:
http://www.nationalmssociety.org/research/intriguing-leads-on-the-horizon/ccsvi/index.aspx
(look in the green box on the right-hand side - there's a link to the transcript).
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1453990 tn?1329231426
I'd wait for the publication of the study.  Just because two things exist together doesn't mean that there is causality.  It just means you need to do more research.  Not sure where you heard that all MS patients had significant stenosis of the jugulars, but the question becomes what is the statistical  variation of the narrowing in the control group.  

Right now, this is very early research and the mechanism of injury is purely hypothetical. Even Dr Zamboni is warning people not to put too much emphasis on this as a treatment.  There are years of research that need to be done before "liberation therapy" will possibly be accepted as a treatment modality.  

Bob  
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755322 tn?1330269114
Nutmeg,

Are you saying the MS patients tested in the Buffalo study all had narrowing of their jugular veins???? Similar to the findings of Dr Zamboni in Italy?
If so Wow!

I am really excited that you are going for the pre angioplasty or venoplasty or whatever it is - consultation. I hope you get the opportunity to get Liberated. Please keep us updated on your adventure and your progress. This is an exciting, and controversial twist in the evolution of MS theories and treatments. If its successful in a large percentage of MS patients, we will all benefit tremendously. This of the relief so many of us would get. Its so exciting as it gives us hope!

Good luck to you.
Go for the jugular!
Jessica
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Avatar universal
I was part of the study at Buffalo Neuroimaging Analysis Center. As of July 2010, all patients with MS had narrowing in their jugular veins. Researchers were amazed. They've done hundreds of patients. They also started a small intervention study. They will not publish results until late spring 2011. If you want a lengthy but great explanation go to http://www.komonews.com/home/video/106175483.html. Dr. Hubbard in Oregan is a proponent - his son had the intervention. I'm going for my pre-angioplasty consultation tomorrow. My chief complaints are lack of energy and brain fog - so why not?
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572651 tn?1530999357
Hi Rivi,If you search this community for CCSVI you will find several discussion about this theory.

The basic is - perhaps a regurgitation of blood and deposits of heavy metals in our brains is causing the lesions and MS.  It is a totally different idea than what researchers have looked at before and is causing great excitement in the MS community.

The folks at Buffalo are involved with a study to do imaging of people with and without MS to see if this condition exists in a large enough population to warrant further study.

Sorry I can't be a bit more explicit - have to run to a dr. appt and then lunch, but I'm sure if you search this community you will find lots of useful information.

be well, Lulu
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