Who are the BIG names in CCSVI ?

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

Postby cheerleader » Sun Mar 07, 2010 1:53 pm

Folks, this thread is for listing doctors and universities currently studying CCSVI. It is not for misleading or misspelled rumor and innuendo.

BNAC is continuing their studies of CCSVI in MS. They are currently having scheduling issues dealing with staffing, but are up and running:
http://www.bnac.net/?page_id=535

Please, let's try to keep these threads on track. I'm sure our moderators would agree.

thanks,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby christophelux » Sun Mar 07, 2010 5:10 pm

VictoriousVictoria wrote:HELLO TO ANYONE WHO CAN ASSIST- I think I can speak for most MS sufferers around the globe that the CCSVI scan gives us something to look forward to ... just having the test. But it doesn't seem so straight forward to get the test in the first place.
Today alone we tried to call the Paris hospital over 8 times, and no one answered the phone. We are trying to get the Doppler as soon as we can as I am in a wheelchair, can't walk and now my hand and arm are getting worse and I fear I won't be able to get myself into my chair on my own soon. I am losing my faith - and need someone to help me find a way to get this all important appointment which I understand may help me. Is there something I'm missing? A special number? Do I need to go through my very dismissive neuro or GP? What ever advise someone can offer I would be so grateful. I am based in London.


The only known radiologist in France performing CCSVI testing with Doppler is Doctor Franceschi number 00 33 1 44 12 80 00 - but more solutions in UK seems to be coming just enlist and wait. Courage
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Re: CCSVI

Postby seeva » Sun Mar 07, 2010 5:21 pm

HI OPRA THANKS FOR YOUR COMENTS. I HAVE REPLY TO YOUR PRIVATE MAIL. THANK YOU TAKE CARE.
REGARDS
SEEVA :roll:
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Postby VictoriousVictoria » Sun Mar 07, 2010 5:53 pm

<shortened url>


Hello, I am a passionate advocate of The Liberation Treatment. In fact, I think the CCSVI issue is a foregone conclusion to all MS patients - at this stage.

If you haven't seen Dr Zamboni interviewed, and the story this news piece on YOU TUBE then it would be to everyone's benefit to see it - it gives us all hope and this is a wonderful news clip to start with.

LIKE SO MANY, if your doctor is dismissing this as an option for you - what about your choice - this is your life and you have a right to contest what s/he says?

Are you prepared to wait until MS takes ahold of your life, body & soul - when the CCSVI test is NOT dangerous - what are people waiting for this is a first step - GO FOR IT - MAKE IT HAPPEN FOR YOURSELF?

Here in the UK there are 10,700 signatories on a government petition to be able to research this further, and to have the scan - now it has to be heard in Parliament - and so it is. We needed the 10,000 signatories. This is the law. Because of the powerful concensis I beleive there is supposed to be a centre set-up for the Doppler test in June in England, and then soon after in Glasgow.

This tells you it is being taken very seriously indeed, and what about 'Dr Claude Franchesci'??? -He is the world's leading vascular surgeon. He wrote a book with Zamboni, and from personal experience the french Doctors are if not the best in the world - some of the best. So head for Paris if you can to see Dr Franchesci as we are. Common sense tells one that the best doctor in the world, in his field, would not put his name to something which would tarnish his world renouned medical reputation. How dare other doctors basically scoff at this concept. Zamboni and Franchesci are 2 doctors whom are two of the best, in the world in their field, and that's all that matters.

Indeed, the French medical establishment are always professional and scienticic. Nothing is about their ego - as I can see it is with all doctors who are dismissing a potentional 'liberation' for some one whom could wind up in a wheelchair. I know I am the best friend of a sufferer, and I see her suffering every day in a way that has made me fight on her behalf - she is literally unable to anymore. And if it means me picketing outside of Parliament for her and other sufferers because they are not sure - well then I will do it for her and others as I intend to dedicate my working days to acheiving credibility for this huge leap forward.

And......If this is a way forward or a possibility of one - then this could be a serious waist of time to just sit and accept what these doctors say to their patients.


CLOSE YOUR EARS - MARCH FORWARD....do not listen to those who can not accept that MS is potentially caused by the blockage of the blood-flow to the brain causing the serious multiple damage.
YOU CAN'T AFFORD TO WAIT TO HAVE THE LIBERATION TREATMENT - IT MAY HELP

DONT LISTEN TO THE DOCTORS WHO SAY NO - THIS IS YOUR CHANCE AND CHOICE As with all operations, there is always a risk but, I beleive, the stent is placed through the groin - as they do when one has a stent put in the vessle near the heart. This is the beauty of this discovery. It's relatively uncomplicated.

THINK...what if my life could change today?
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I agree

Postby msfitz » Tue Mar 09, 2010 8:05 am

This is the way to go before WE get more disabled. I made an appointment with a vascular surgeon for Mar. 23 and am bringing my laptop with me, (a tip I got from a facebook friend and fellow MSer) I may even mail some papers to him ahead of time? Get him use to what WANT and EXPECT of him at my appointment! An rx for a doppler xray of my neck veins, MVA and what ever else it takes to see if my veins are occluded or malformed and hopefully insurance will pay for it, they should as it is a legitimate medical reason! RIGHT? [/b]WE have to advocate for ourselves, people, We are a group of ONE in this fight against MS!
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Postby Rosegirl » Tue Mar 09, 2010 11:31 am

I agree with your pro-active approach, but perhaps the place to start is to get scanned before you see a surgeon. It seems to me that the biggest hold-up now is finding facilities that can do the scans as Zamboni did.

A generic scan won't find the blockages in the locations in the head and neck. It may be that they're looking not just at the veins, but measuring the flow into and out of any blockages. And that flow rate changes with the position of your head. Laying down will give one measurement, sitting upright or laying at a different angle will give another measurement.

It sounds like some scans also look at iron build-ups around those blockages to see if that's were lesions are.

I have a doctor who was glad to order the scans for me, but we haven't found any facility in the area that has both the proper equipment, technicians to do the test and radiologists trained to read them. It sounds like even at the University of Buffalo, there is a holdup while they update equipment and train folks.

I hope your doctor has the training you need and the equipment and technicians to give you the answers you're looking for. But before you plunk down your money, you might want to check. There have been folks who didn't do enough checking and got scans that showed nothing. They wasted time and money and are now confused about whether (or how) to pick another facility and try again.
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Postby ozarkcanoer » Tue Mar 09, 2010 11:55 am

This sticky thread is for publishing and discussing the BIG NAMES in CCSVI, ie Zamboni et al. Please start a new thread for topics that do not fall under this category. Thanks for your help.

If you have found a new doctor or researcher who is interested in CCSVI please post that information on this thread.

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Thanks

Postby msfitz » Tue Mar 09, 2010 10:10 pm

Thanks Rosegirl,

I appreciate your advice. I just want to see if my left jugular vein is being pushed at by my vertebra because it very obviously sticks out on the left side, two PT's have told me so, and I do exercises to help but from using my walker my muscles on the right side of my neck have shortened and I'm told that could be keeping the vertebra out of place, so like I said I just want to know if maybe that's a problem, I would think they'd be able to see something like that on a scan of my neck, maybe I'm rushing but I'm curious also, I already have to use a walker, I don't want to end up in a wheelchair, sorry everyone.
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Postby Lyon » Wed Mar 10, 2010 3:16 pm

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Last edited by Lyon on Mon Nov 21, 2011 6:08 pm, edited 1 time in total.
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Postby jenf » Thu Mar 11, 2010 5:00 pm

ugh
Last edited by jenf on Tue Jun 08, 2010 11:05 am, edited 1 time in total.
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
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Postby jimmylegs » Thu Mar 11, 2010 9:32 pm

From what I can see, there is a lot of conversation going on here, not just names being added to a list... and there have been some names contributed which are not currently shown in the original post... which makes them harder to find, which is not the point of this item being a sticky.

it is true this sticky is not the venue for debating about ccsvi. but all in all, medical names are still getting lost in the general shuffle here folks..
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Postby ozarkcanoer » Fri Mar 12, 2010 11:32 am

jimmylegs,

I'm sorry that I haven't posted some of the newer doctors on the BIG NAMES post. I was waiting until some of the doctors mentioned were verified, plus I think that I should start a new category beyond the original BIG NAMES. Maybe I should call this category something like : "DOCTORS COMING ON BOARD" or something a little catchier that I can't come up with now. The BIG NAMES I think should be the original pioneers.

What do you think ? This thread was not really intended as a reference for treatment. Maybe I should add a link to the csvi-ms.net list of doctors treating MS rather than try to generate a whole new list myself ?

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Postby jenf » Fri Mar 12, 2010 11:56 am

blank
Last edited by jenf on Tue Jun 08, 2010 11:14 am, edited 1 time in total.
Jen

RRMS - dx 06/09
LDN - 4.5mg 06/09-present
Copaxone - 06/10-09/10
Avonex - 06/12-06/12

Late Stage Lyme - 12/10
Too many meds to list!!

Remember, today is the tomorrow you worried about yesterday..
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Postby jimmylegs » Fri Mar 12, 2010 4:40 pm

no need to apologize folks, i'm just trying to sort through things, since the question of what is appropriate to post has arisen.

how about leave the top part of the original post for BIG NAMES and the lower section could be for new names??? just thinking out loud, hoping to find a way to keep it to one sticky.

i like the idea about adding the link to the csvi-ms.net list of docs treating ccsvi.
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Postby ozarkcanoer » Fri Mar 12, 2010 7:09 pm

Hi jimmylegs and everyone,

I updated the list of "big names" and added to the end of the post a link to doctors currently researching and treating CCSVI. Please give me any feedback. Thanks,

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