Buffalo Study

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

Postby CureOrBust » Wed Jan 27, 2010 3:10 am

CureIous wrote:How about a search primer while we're at it, that might be a bit more helpful.
I have always found the "Google" search (on the left lower section of your image), to be much more useful. Or simply typing into Google:
Code: Select all
site:www.thisisms.com "My Search Term" other words maybe username
I think they do the same thing.
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Postby jay123 » Wed Jan 27, 2010 6:37 am

Johnson wrote:
jay123 wrote:
Thanks, thats my point that the mods should get much more active here!


I would always use could over should, but perhaps we need to cut the moderators some slack? After all, they are volunteers, with MS, and may be suffering their own "cog fog"...

Grin


Big J,
In this case I think the needed word is 'should' not 'could', but I understand your point.

I did volunteer to be a moderator months ago, but the reply I got was "just tell me what posts have problems!".

And I don't believe in over moderating, just making obvious changes like closing duplicates and moving posts that are obviously in the wrong thread.
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Its early February...any update?

Postby fogdweller » Wed Feb 03, 2010 9:49 am

Its hard not to be anxious...does anyone have any update on when the first results will be released?

If the are positive, I predict a real tidal wave of pblic interest. If they are negative, some of us believers will look for what defects might have been in the study, but getting much interest/money directed at the issue will be a very slow process from there on. I just hope Buffalo did a good job with their study.
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Buffalo Study

Postby Bobbi » Wed Feb 03, 2010 10:34 am

Back on topic .....
Looking at the agenda for the Hamilton CCSVI Workshop on February 7, Dr. Zivadinov of Buffalo is speaking on "CCSVI and MRI outcomes in MS". It may suggest that he will be presenting the Buffalo study results at this time. They also just had a fundraising event but I don't know how much they raised of the $5 million they need to run the next step of the research.
Hopefully, after this meeting of the 'MS minds', Buffalo will start setting up for the new study. I have also applied, been acknowledged, filled out the survey, but not heard anything yet.
Keep up the faith!
Bobbi
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follow on study...so coooolllll

Postby coin » Thu Feb 04, 2010 11:13 am

obviusly from a dutch webpage.....
COMING SOON…..

We are excited to announce a new pilot research study conducted by the Departments of Neurology and Neurosurgery to evaluate the safety and effectiveness of intravascular angioplasty for the treatment of venous narrowing in the treatment of Multiple Sclerosis (MS).

Thirty (30) MS patients will go through a two phase study which will include selective Venography followed by a balloon angioplasty procedure. Study testing will include Doppler ultrasound, MRI with MRV, physical and neurological examinations, CT Angiogram (CTA) of the head and neck and CT Perfusion (CTP) of the head. All of these tests will be performed at baseline (prior to any treatment) and at 1 month after treatment. A subset of these tests will also be performed 3 and 6 months post treatment.
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Postby ozarkcanoer » Thu Feb 04, 2010 11:19 am

coin,

would you post a link to the page that reports this Dutch study ?

Thanks,

ozarkcanoer
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Postby cah » Thu Feb 04, 2010 11:56 am

It's mentioned here:

http://www.msweb.nl/forum/showthread.ph ... 56&page=18

and here:

http://www.facebook.com/posted.php?id=1 ... comments=1

(almost bottom of page)

but they both link to http://www.bnac.net/?page_id=534 which is an empty site. :?
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Is this Stanford?

Postby fogdweller » Thu Feb 04, 2010 12:03 pm

I don't read Dutch, so I don't know where this test might be conducted. I did notice the reference to Stanford in the first web page cited. Might this be the upcoming Stanford study? if so, it is the first I have read the basic study outline of what Stanford proposes to do.
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Postby Inge67 » Thu Feb 04, 2010 12:09 pm

Hi all,

this is a posting from Romana, who is living in Italy and is our Dutch correspondent abroad... Very handy with things happening in Ferrara! That is why you found the same link also on an Italian facebookpage.

The study is not Dutch, it is indeed a follow up of the Buffalo study as I understand it correctly.
Strange though that it links to an empty page.

As we in Holland interpreted it, was that this follow up study is à sign that results of the first study MUST be positive, otherwise BNAC would not initiate this follow up.

Or am I just too positive and whishfull in my thinking?

The reference to Stanford is the support mails everyone os sending in order to support dr. Dakes research.

Sorry for the confusion! We are all looking closely to Tims, funny to see that you are also looking at MSWeb in Holland. I van also recommend the site à group of ms patiënts built themselves: ccsvi.nl.
Very informative. If you read Dutch...

Inge
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Postby cah » Thu Feb 04, 2010 12:37 pm

Also found this bnac page:

http://www.bnac.net/?page_id=505

saying:

MEDICAL MRI DR. ONDREJ DOLEZAL
CHARLES UNIVERSITY IN PRAGUE, CZECH REPUBLIC

Buffalo Neuroimaging Analysis Center (BNAC) awarded the 2010 Fellowships to Dr. Ondrej Dolezal from Czech Republic for duration of six months.

The proposed research will investigate chronic cerebrospinal venous insufficiency (CCSVI) in patients with multiple sclerosis.


But I can't make head or tails of it. Apparently they fund a CCSVI-Study in Czech Republic?
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby ErikaSlovakia » Thu Feb 04, 2010 1:00 pm

cah wrote:Also found this bnac page:

http://www.bnac.net/?page_id=505

saying:

MEDICAL MRI DR. ONDREJ DOLEZAL
CHARLES UNIVERSITY IN PRAGUE, CZECH REPUBLIC

Buffalo Neuroimaging Analysis Center (BNAC) awarded the 2010 Fellowships to Dr. Ondrej Dolezal from Czech Republic for duration of six months.

The proposed research will investigate chronic cerebrospinal venous insufficiency (CCSVI) in patients with multiple sclerosis.


But I can't make head or tails of it. Apparently they fund a CCSVI-Study in Czech Republic?

Yes, this is what Czech MS patients told me couple of months ago.
They say a doctor from Czech Republic went to the USA to train Doppler and I think in April or May this year couple of MS patients in Czech Republic are supposed to go for Doppler as well. It is organised by an MS center in Prague. I do not know more and I do not think there are any official information about this.
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby cah » Thu Feb 04, 2010 2:41 pm

Now the buffalo site about the treatment study works: http://www.bnac.net/?page_id=534
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby AlmostClever » Thu Feb 04, 2010 2:54 pm

I didn't know BNAC was offering CCSVI diagnostic testing to the generalpublic. Cost is $4500 or $6000 depending on the package.

Here's a link:

http://www.bnac.net/?page_id=535
If you can't explain it simply, you don't understand it well enough. - Al Einstein
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Postby zap » Thu Feb 04, 2010 3:09 pm

Limo service?!
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Postby PCakes » Thu Feb 04, 2010 3:55 pm

hmm.. is this new? Are they doing this to raise funds?
"test report provided for your physician/ Neuro... When will the need for the Vascular community be aknowledged?
"I am a person living with CCSVI"
Do we need a new site?... "ThisIsCCSVI".. :)
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