First published research from Stanford

[cheerleader]

Two years later... the tests (MRV and venography) of the 39 pioneers at Stanford is published in the American Journal of Neuroradiology. Thanks to Jeff, Lew, Marie, Sharon, coach, Rhonda, gibbs, and all the others for leading the way.

(BTW-this is how long it traditionally takes to see studies pass thru the peer-review and publication process. Not the six weeks we've seen in other journals....)

bottom line, venography is more sensitive than MRV. Frequent venous abnormalities were found in pwMS. I'll get the whole paper to report the rest. They found CCSVI.

Comparison of MR and Contrast Venography of the Cervical Venous System in Multiple Sclerosis

G. Zaharchuk, N.J. Fischbein, J. Rosenberg, R.J. Herfkens and M.D. Dake
From the Departments of Radiology (G.Z., J.R., R.J.H.) and Cardiothoracic Surgery (M.D.D.), Stanford University, Stanford, California; Department of Radiology (G.Z., N.J.F., R.J.H.), Stanford University Medical Center, Stanford, California.

Please address correspondence to Greg Zaharchuk, PhD, MD, 1201 Welch Rd, PS-04, Stanford University Medical Center, Mailcode 5488, Stanford, CA 94305-5488; e-mail: gregz@stanford.edu

BACKGROUND AND PURPOSE: MRV has been proposed as a possible screening method to identify chronic cerebrospinal venous insufficiency, which may play a role in MS. We report our initial experience comparing MRV and CV in MS patients to evaluate venous stenosis and collateral venous drainage.

MATERIALS AND METHODS: Time-of-flight and time-resolved imaging of contrast kinetics MRV and CV were performed in 39 MS patients. The presence and severity of both IJ vein caliber changes and non-IJ collaterals were graded by using a 4-point scale by 2 radiologists in an independent and blinded manner.

RESULTS: Both studies frequently showed venous abnormalities, most commonly IJ flattening at the C1 level and in the lower neck. There was moderate-to-good agreement between the modalities ( = 0.55; 95% CI, 0.45%–0.65%). For collaterals, agreement was only fair ( = 0.30; 95% CI, 0.09%–0.50%). The prevalence of IJ segments graded mild or worse on CV was 54%. If CV was considered a standard, the sensitivity and specificity of MRV was 0.79 (0.71–0.86) and 0.76 (0.67–0.83), respectively. Degree of stenosis was related to the severity of collaterals for CV but not for MRV.

CONCLUSIONS: IJ caliber changes were seen in characteristic locations on both MRV and CV in MS patients. Agreement between modalities was higher for stenosis than for collaterals. If CV is considered a standard, MRV performance is good but may require additional improvement before MRV can be used for screening.

link to abstract

[cheerleader]

Bought the paper for $10.00. Jeff's screwed up veins are in it. Dr. Dake isn't the lead author...he gave all the research to a blinded neuroradiologist who scored the venous irregularities. Everyone had something wrong with their jugular veins.

We obtained approval from our Institutional Review Board for a ret- rospective study of MS patients who underwent both MRV and CV within a 24-hour period. Patients were included if they had a CV study and an MR imaging that included both 2D-TOF and TRICKS MRV of the neck. All such patients between April and December 2009 were included.

So...the focus of the paper is the comparison of MRV to actual venography. The paper is not CCSVI centric, so to speak. It is more about evaluating venous stenosis and abnormalities on MRV and venogrpahy.

The neuroradiologist went thru all the MRVs and rated stenosis. There is a chart with a breakdown of his findings.

Also, because we were interested in the use of MRV as a screening tool, we determined the sensitivity and specificity of MRV if a single severe rating was used as a trigger for performing a CV (venography) examination. The CV examination was considered positive if it also detected severe stenosis. Finally, we compared the correlation between the composite vein stenosis scores with the assessment of the collaterals on each side to determine whether increasing amounts of stenosis seen on either MRV or CV were related to the presence and severity of collaterals by using a rank correlation with 95% CIs based on 5000 bias-corrected bootstrap samples adjusted for clustering within patients.
All statistical analyses were done with Stata Release 9.2 (StataCorp LP, College Station, Texas).

Results
Thirty-nine patients met the inclusion criteria: 13 men and 26 women, with a mean age of 46 years (range, 22– 67 years). The type of MS was as follows: 22 relapsing-remitting, 5 primary-
progressive, and 12 secondary-progressive. The patients had relatively severe EDSS scores (median, 5.5; range, 1.5– 8.5).

cheer

[ikulo]

Stanford? Bah.. never heard of it.

This caught my eye, "Degree of stenosis was related to the severity of collaterals for CV but not for MRV." Setting aside the difference in sensitivity between the two methods, this makes me wonder, could collaterals be an effective marker for stenosis and would there be an inverse relationship between collateral formation and disease severity?

Apparently more severe collaterals suggest more severe stenosis. However, if the body has the ability to overcome venous stenosis by forming collaterals, would this have an impact on disease activity? Meaning, would a person who has the ability to make greater collaterals (higher VEGF?) than another also have better drainage, and as a consequence lesser disease? That could explain why some with severe stenosis have low disease activity and those with little stenosis have the opposite. Or at least it may be a factor.

[cheerleader]

However, if the body has the ability to overcome venous stenosis by forming collaterals, would this have an impact on disease activity? Meaning, would a person who has the ability to make greater collaterals (higher VEGF?) than another also have better drainage, and as a consequence lesser disease? That could explain why some with severe stenosis have low disease activity and those with little stenosis have the opposite. Or at least it may be a factor.

This is a GREAT point, Ikulo. I was surprised to see that Jeff's paraspinal collaterals were rated "moderate" in both modalities....because he had a large collateral network going, and severe stenosis. He was also the lowest on the EDSS scale in the paper, although older (at 47 when tested) So, there may be correlation there. Those collaterals were working hard for many years. More to learn, but this publication is a good start...
cheer

[civickiller]

as Cheerleader bolded out, problems at C1, frequently.
and as Dr. Arata said vein blockages at C1.

i guess our talking about needing adjusting with our Atlas or C1 is just a coincidence.
Upper Cervical Care as a bunch of us are saying can help with C1 and lower neck blockages since a misaligned atlas can cause a spine misalignment

how much do we need to point this out before people will AT LEAST go to a Upper Cervical Dr. to see if they need aligning. But people got to want to help themselves

I believe thats why people restonsis after CCSVI surgery so fast

[cheerleader]

civic--
could very well be...not in Jeff's case, we had him checked out, and it turned out to be muscle compression (probably from years as a professional trumpeter). His cervical spine is in great shape. He also had a malformed left dural sinus (hypoplasic)...but you're right, everyone should have it all checked out. Restenosis could occur for a variety of reasons (endothelial dysfunction, virus, stress, compression), and atlas issues could certainly affect many. Figuring out restenosis is going to be the issue in years to come.
cheer

[civickiller]

cheer,

u mean checked out by a upper cervical Dr. ? and cervical spine in great shape meaning it looked in great shape or great shape by being in alignment ?

having a misligned atlas can cause the spine to be off shifting muscles or organs and maybe smashing veins between muscle, organs, and bones

but like u said, it might be many factors

[Lyon]

.

[civickiller]

Somehow it doesn't seem accurate to compare the time this study took to go from beginning to print with the time it took articles you don't happen to agree with to go from submission to acceptance, but this is your circus so please do continue.

you mean how stanford took 2 years vs articles took 6 weeks? meaning? sorry im not really understanding what u mean

[patientx]

Somehow it doesn't seem accurate to compare the time this study took to go from beginning to print with the time it took articles you don't happen to agree with to go from submission to acceptance, but this is your circus so please do continue.

you mean how stanford took 2 years vs articles took 6 weeks? meaning? sorry im not really understanding what u mean

A point of clarification:

"Comparison of MR and Contrast Venography of the Cervical Venous System in Multiple Sclerosis"

Received September 26, 2010; accepted after revision December 26

That's about 12 weeks.

[CureOrBust]

We obtained approval from our Institutional Review Board for a ret- rospective study of MS patients who underwent both MRV and CV within a 24-hour period. Patients were included if they had a CV study and an MR imaging that included both 2D-TOF and TRICKS MRV of the neck. All such patients between April and December 2009 were included.

So...the focus of the paper is the comparison of MRV to actual venography. The paper is not CCSVI centric, so to speak. It is more about evaluating venous stenosis and abnormalities on MRV and venogrpahy.

The paper may not be CCSVI, but I think there is a subtle but significant change in the tide, in that from the small excerpts you have provided, Venous abnormalities appear to be almost assumed to be related to MS, so the paper only needs to deal with which method is best to find it. And this is in a publication that is respected by the general medical fraternity, not a fringe publication. I think the fact that this made it through peer review is a testament that this is starting to become mainstream.

[Lyon]

.

[eric593]

Somehow it doesn't seem accurate to compare the time this study took to go from beginning to print with the time it took articles you don't happen to agree with to go from submission to acceptance, but this is your circus so please do continue.

you mean how stanford took 2 years vs articles took 6 weeks? meaning? sorry im not really understanding what u mean

Cheer has been very vocal about discrediting and lambasting peer-reviewed medical journals, their editors, their entire staff, peer-reviewers, and article authors when they present an anti-CCSVI study or point of view. However, it seems this can be rehabilitated in her eyes if they subsequently publish pro-CCSVI studies though (think of her personal attack on the Lancet and everyone associated with them earlier when they printed a critical CCSVI editorial (including towards that article's author, the editor of the Lancet, and everyone remotely associated with the journal) but her reversal and sudden approval of them now that a recent publication of theirs was pro-CCSVI).

One of her points at attempting to criticize the anti-CCSVI publications has been to throw suspicion on the speed at which publication of studies has occurred when their results do not support CCSVI or the delay in publication when they do. In this case, she is comparing earlier anti-CCSVI publications to how long it took to publish Dr. Dake's paper. Of course, Dr. Siskin's safety study was published much earlier too along with other pro-CCSVI articles.

Lyon does not see any valid basis to take either THIS publication as having been inordinately and suspiciously delayed or lay suspicion on the peer-reviewed journals that published some anti-CCSVI studies sooner than this. Without more information, it really does seem like vague, unsubstantiated criticisms against respected medical journals and hard working staff and medical professionals with no real hard evidence to back up the accusations. IMO, it just sounds like sour grapes.

Cheer, I also note that you are quick to point out all prior or current affiliations those with anti-CCSVI sentiments have to pharmaceutical companies, etc. I certainly hope you will also provide that same caveat for any PRO-CCSVI statements made by bestadmom and Cece since they now both have a professional affiliation with AAC and Dr. Sclafani's CCSVI practice. This certainly gives them a vested (and conflict of) interest in CCSVI matters now that they have professional ties to AAC and Dr. Sclafani. I hope you will point out this potential conflict with THEIR comments as aggressively as you do when you find possible conflicts with those you construe as making anti-CCSVI statements.

http://www.businesswire.com/news/home/2 ... cation-Day

American Access Care Hosts Special Education Day for MS Patients and Caregivers NEW YORK--(BUSINESS WIRE)--On July 15, 2011 at 9:30 a.m., American Access Care, the premier operator of interventional radiology centers in the United States, will host a special Education Day for patients that are suffering from Cerebrospinal Venous Insufficiency and caregivers at the Crowne Plaza Times Square Hotel in New York City. The free-to-attend Education Day will launch their three-day symposium on Cerebrospinal Venous Insufficiency, also known as CCSVI, a hotly debated new treatment for sufferers of neurodegenerative diseases such as multiple sclerosis, a disease that affects nearly three million people worldwide. Education Day will be hosted by CCSVI physician advocate Salvatore J.A. Sclafani, MD, who is a Professor and Chairman of Radiology and Professor Surgery and Emergency Medicine at SUNY Downstate College of Medicine, University Hospital of Brooklyn

2nd Annual CCSVI Symposium in NYC July 15-17

I am very pleased to announce that there will be a second Annual NYC CCSVI symposium this year from Friday July 15 through Sunday July 17.

This conference then, triples the time compared to the first one in 2010. Not only have I added a second day for professionals (July 16-17), I have also instituted a full day dedicated to patient education and discussion (July 15).

The meeting will take place in Manhattan and it will be managed by a professional meeting and event service. Not that we did not have a great conference last year in Brooklyn, I just thought we were ready for prime time in the Big Apple.

The Patients have their say and their day!
Our steering committee includes two PsMS well known to everyone, Cece and Bestadmom.

I want to clarify that bestadmom represents the meeting itself. She is on the organizing committee and speaks with authority

she communicates with the meeting coordinating company and American
Access as an advisor and patient representative

DrS

http://www.businessdictionary.com/defin ... ittee.html

steering committee   Definition

An advisory committee usually made up of high level stakeholders and/or experts who provide guidance on key issues such as company policy and objectives, budgetary control, marketing strategy, resource allocation, and decisions involving large expenditures.

[Cece]

Can't wait to read through all this. I thought it could never be published because it wasn't under IRB? Very glad to learn otherwise....

[cheerleader]

Can't wait to read through all this. I thought it could never be published because it wasn't under IRB? Very glad to learn otherwise....

That's what I thought, but the researchers were able to get a "retrospective IRB" for the testing part alone.

We obtained approval from our Institutional Review Board for a ret rospective study of MS patients who underwent both MRV and CV within a 24-hour period. Patients were included if they had a CV study and an MR imaging that included both 2D-TOF and TRICKS MRV of the neck. All such patients between April and December 2009 were included.

I'm so glad all of this information is able to be viewed now. Lots of pictures of the malformations found. Dr. Dake gave his MRV/venography results to a blinded neuroradiologist at Stanford, who was not involved in the original testing, who went through each case and gave a rating to the severity of jugular stenosis...case by case. Every one of the 39 Stanford MS/CCSVI patients has some form of abnormality. Submitted last September after getting the IRB approval, it only took 10 months to publication. Mea culpa. It's odd to finally see Jeff's malformation in print, 27 months later.

Hope you had a good day, Cece. You must be exhausted from all the activities in NYC. Thank you for everything you are doing for pwMS. Get some rest, and let us all know how it went.
all best,
cheer