This Is MS Multiple Sclerosis Community: Knowledge & Support

BNAC shows that it is following a rigorous process in publishing its research into CCSVI and MS. Wonder if some of the quickie articles critical of CCSVI have had similar thoroughness before publication?

In my mind it's not the data collection, it's the data itself.

A few under treated patients were deemed as CCSVI negatives in their first BNAC/ Zivadinov studies ( doppler for CCSVI ) and then were subsequently tested positive and treated for their CCSVI with angioplasty (TPA) at other centers.BNAC missed them.

This could have happened at a any number of places . Especially in the early places, as the techs and Drs learned more they got better.

BNAC should have amended their first stats when the under-treated reported that they got diagnosed CCSVI POSITIVE and they got liberated elsewhere.
The previously under treated patients saw improvements after TPA. Some have recorded their stories on This website.

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Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-

let's be clear here . The BNAC and Dr. Zivadov are to be praised and not condemned in any shape or manner. They stood up and were counted when it mattered most . The beginning .

Was / Is their data correct ? Time will tell.

regardless ...... they have played a valuable role in the CCSVI process of discovery.

I salute the BNAC ...... and their wonderful medical professionals .... for taking part in this historic discovery ........ CeCeSVI .



Mr. Success

CeCeSVI...gotta like the sound of that!

I haven't made up my mind on the BNAC/Zivadinov results. I think they genuinely looked for CCSVI. They've contributed to our understanding that MRV is not the best way to look for it. They switched to doppler ultrasound and got the training. I think my frustration is more with the fact that it is not easy to image CCSVI outside of a catheter venogram than it is with the researchers doing the various imaging studies. My own occlusions showed up markedly on the MRV, but they were very severe stenoses.

MrSuCC(SVI)ess! May all CCSVI procedures and research be met with success.

I'll drink to that .... in fact I'll drink to anything

back to BNAC ...... ..... were they not the first to accept the Zamboni challenge ? And as such .... they were charting new territory .

At the heart of the BNAC study ..... was to determine if they could identify which people had a condition called CCSVI ..... using a safe non-invasive procedure .

Ten years from now .... the BNAC will cringe at the technology they initially used . We all will.

Okay ........ time for another cocktail ....



Salute ..... BNAC and CeCeSVI !!!



mR. sUCCshees ... drinkin' again ..... I'm ... drinkin' again ...

As to accuracy of testing at BNAC... I was tested there and they only found stenosis in my right IJV. Dr Haskal during my procedure and using IVUS discovered that my left IJV was also occluded (and maybe worse than my right). Plus he discovered that my azygous is twisted. I am a BNAC fan, but I question the use of ultrasound to discover stenosis because of my own personal experience. I'm with you Mr Success.... BNAC was the first (in the USA, remember Simka) and should be commended for his courage to research CCSVI with no up-front funding.

ozarkcanoer

OC - your experiences are immeasurably important to those following the path of CCSVI treatment . I find your posts reliable and well grounded.

Thank you for this .

The BNAC CCSVI investigators used the equipment they had .... to do the best they could . As I said , 10 years from now ..... the methods and equipment will be seen to be of the '' Fred Flintstone '' era.......

Bottom Line . The BNAC stood up and were counted ...... when all others went chicken shit .... on pwMS.

They deserve a gold medal for courage .

As do you OC.




Mr. Success

FYI - I sent a request for information to BNAC last week because I keep getting asked to make donations but am being provided with no info.

Here is the reply I got....

Thank you for your interest in our research. BNAC's research will be published next month in a major peer-reviewed journal. Until that is public, the findings cannot be made public. I know it is hard to wait.

We did the one newsletter and Dr. Zivadinov appeared with the Department of Neurosurgery on the announcement of the treatment study that is in progress. Phase 1 is complete and Phase 2 has begun. Again, we cannot comment on the results at this time.

We are planning a patient education symposium on Saturday, 5/7 at the University at Buffalo. If you live nearby,you may want to attend. If you are on Facebook, please go to BNAC CCSVI study for more information.

We thank you for your patience. I wish things could move faster, too.

So it appears we are close...
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_________________
Onthelake

I am a great believer in luck, and I find the harder I work, the more I have of it.  Stephen L.

Great news!!! Even if their results do not show as strong of an association as what we are seeing in our clinical experiences, it still shows a major association.

why not say which peer reviewed journal ?

This would give everyone a chance to audit the journal and get familiar with it .

As for the results ...... as the saying goes ........aim low ... to avoid disappointment


Either way ..... something to look forward to ...........




Mr. Success

I also was told that a paper will be published from BNAC in March. In what journal I don't know either. It will be fun to have a paper to pick apart word by word. Since I am an Apple fan, I keep looking for information on the new iPad and all I find is rumors rumors and rumors. Well now they have announced it with a video !!! Always something to look forward to.

I hope it won't be too long before we start seeing papers from other CCSVI research sites. Just how many procedures has Dr Simka done, LOL ?

oxarkcanoer