Dr Freedman at AAN

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

Dr Freedman at AAN

Postby Cece » Thu Apr 26, 2012 2:41 pm

http://www.medpagetoday.com/MeetingCove ... ting/32376
Mark Freedman, MD, of the University of Ottawa in Ontario, pointed out after Barreto's presentation that serial ultrasound scans would have made the findings more reliable, as venous sonography results tend to be variable within patients.

Nevertheless, he told MedPage Today, CCSVI had already been essentially ruled out as a contributor to MS.

"There are just some people who are convinced that neurologists don't know what they're doing. The data [that CCSVI is unrelated] is pretty convincing," Freedman said.

Asked if there was a role for using a series of imaging studies -- ultrasound followed by MR and CT venography, for example, he responded, "You know the expression about a dead horse?"

This is discussing 2 studies presented at AAN that couldn't find much CCSVI using doppler or MRV.
Maybe neurologists should present at an IR conference and the IRs finding positive results should present at AAN. Switch them so they hear what the other side is hearing. It's disorienting to have 2 such separate versions of the truth.

Ok, if you go here http://aan.posterview.com/ and enter 'ccsvi' as the search term, you will a single result: the Canadian meta-anslysis that showed that even using the most conservative analysis, there was an association between ccsvi and ms. I think that if Dr. Freedman cannot include that in his version of reality (which to him is that ccsvi has already been ruled out), he should no longer be speaking on the matter. This was presented at the very conference he was at. We cannot afford to be selective and only listen to negative results, or only to positive results.
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Re: Dr Freedman at AAN

Postby Cece » Thu Apr 26, 2012 5:07 pm

here is the abstract:
[S10.005] A Study of CCSVI with Imaging-Blinded Assessment: Neurosonography Update

Andrew Barreto, Staley Brod, Thanh-Tung Bui, James Jamelka, Larry Kramer, Kelly Ton, Alan Cohen, John Lindsey, Flavia Nelson, Ponnada Narayana, Jerry Wolinsky, Houston, TX



OBJECTIVE: Does chronic cerebrospinal venous insufficiency (CCSVI) exist, is it associated with multiple sclerosis (MS), and what tools might establish its presence? We sought to determine if neurosonography (NS) provides reliable information on cerebral venous outflow patterns, if NS findings are supported by 3T magnetic resonance venography (MRV), and if NS and/or MRV reflect transluminal venography findings. We detail NS findings on the first 193 participants.

BACKGROUND: CCSVI is postulated to have a role in MS pathogenesis.

DESIGN/METHODS: TB, blind to the subject's diagnosis, used high resolution B-mode imaging with color and spectral flow Doppler to investigate extracranial and intracranial venous drainage. Results were evaluated by ADB with neither subject contact nor patient information; only KT and JSW could access the complete database.

RESULTS: 10 healthy controls, 18 cerebrovascular diseases, 27 other neurological diseases, 138 MS (7 clinically isolated syndrome, 80 relapsing remitting, 35 secondary progressive, 15 primary progressive, 1 progressive relapsing) were studied. MS patients were older than non-MS subjects (48.4±9.8 v 44.3±11.4 years), durations from first symptoms and diagnosis of 13.7±9.4 and 10.3±8.0 years, and EDSS 2.9±2.0. 47 subjects fulfilled one of five criteria for CCSVI proposed by Zamboni; 8 fulfilled two criteria and none fulfilled >2 criteria. The distribution of subjects with 0, 1 or 2 criteria did not differ significantly across all diagnostic groupings, between MS and non-MS subjects, or within the MS subgroups. No significant differences emerged between MS and non-MS subjects for measures of cross-sectional areas of the internal jugular veins at fixed anatomic sites or for extracranial or intracranial venous flow rates.

CONCLUSIONS: NS findings described as CCSVI are much less prevalent than previously reported and do not distinguish MS from other subjects. Data will be updated prior to the meeting. Correlations of NS and MRV for 37 MS subjects are reported separately. Supported by: National Multiple Sclerosis Society (RC 1019-A-5).Category - MS and Related Diseases: Clinical Science

As described in the Medpage article, the patients found to have CCSVI by MRV did not have CCSVI by doppler; and the patients found by doppler did not have CCSVI by MRV, which lends some confusion as to whether the imaging methods were accurate, since they did not agree with each other.

According to Cheer on the CCSVI in MS page, this group did not use Dr. Zamboni's ultrasound methods.

And I hope Marie does not mind me copying her explanation of why it matters what ultrasound method is used:
this is marie-we knew this was the achilles heel of CCSVI from the first months when several of us tried to get dopplers locally...I did get some at the U. of Wash in the vascualr surgery department with and expert doppler tech who'd studied Zamboni's papers. He did see reflux in the vertebral veins, but not the "Zamboni criteria" for CCSVI. Then I went too Stanford the week after Jeff and Dr Dake had their doppler tech do Zamboni style scans and the snotty tech who was derisive if the whole thing said my scane were utterly completelly normal. There was absolutely nothing at all amiss and not even the vertebral veins the UW saw. The next morning I had a venogram and both jugulars were blocked 90%.

I had dopplers done by Eric Fiegenbutz two years later to check my post treatment blood flow--he was directly trained in Zamboni methods and owns his own chain of clinics. He found reflux in my deep veins right away (my stent is blocked). I asked him if he could have figured out the Zamboni stuff without the training he said no not at all. It took the two weeks training for him to understandf fully what theya re looking for. It isn't the normal thing, what you look for is subtle not gross differences and you simply let the litttle blips pass you by without training.

Dopplers are a completely ridiculous waste of time and money UNLESS done by people trained. I wrote about this problem and predicted this in my book 2 YEARS AGO. I'm just a nurse, how come neurologists don't get this?
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Re: Dr Freedman at AAN

Postby David1949 » Thu Apr 26, 2012 6:22 pm

My Doppler Ultrasound also showed no problem, but the venogram showed 90% blockage on the left and only a 3mm dia. right jugular. Put me in the camp that says the Doppler Ultrasound is useless.
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Re: Dr Freedman at AAN

Postby 1eye » Thu Apr 26, 2012 7:37 pm

I think plethysmography is a lot more reliable than some folks' opinions on the viability of equine life, let alone "MS".
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Re: Dr Freedman at AAN

Postby Robnl » Fri Apr 27, 2012 1:49 am

If you don''t WANT to see it you don't see it. Guys like Freedman are so into denial that they mention everything that smells like 'i said it, it does not work.

After 5 years since the Zamboni publication the ones that dived in deep discovered so many things about ccsvi....ccsvi is here to stay, whatever the end-conclusion.

I also hear from some neuros; ccsvi?? that''s already ruled out...or; we dont hear much about it nowadays etc etc

does remind me again of the following:

“First they ignore you, then they laugh at you, then they fight you, then you win.” (Ghandi)

we are at the third one.... :mrgreen:
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Re: Dr Freedman at AAN

Postby Cece » Sat Apr 28, 2012 7:58 am

I want the winning to come sooner rather than later. Yesterday for me was another of those, "This day was brought to you by Dr. Sclafani," days, in which I'd done ten things before noon that I'd never have accomplished prior to the procedure. If other people with MS could be having days like that, I want them to have them.

The following abstract was posted up in the research thread. This is why declaring victory or defeat based on ultrasound data is not wise. It does not hold up well to catheter venogram.
Diagnostic accuracy of current sonographic criteria for the detection of outflow abnormalities in the internal jugular veins.

Simka M, Ludyga T, Latacz P, Kazibudzki M.

Journal Phlebology.
2012 Apr 23. [Epub ahead of print]

Affiliation EUROMEDIC Specialist Clinics, Department of Vascular & Endovascular Surgery, Katowice, Poland.

Abstract

OBJECTIVES: This study was aimed at evaluation of the diagnostic value of Doppler sonography for the assessment of abnormalities in the internal jugular veins (IJVs).

METHOD: One hundred and sixteen IJVs were assessed in 58 patients with associated multiple sclerosis. Findings of Doppler sonography were compared with results of the reference test: catheter venography.

RESULTS: At least one positive extracranial sonographic criterion suggesting venous abnormality was found in 92.2% of the assessed veins. Yet, sensitivity, specificity, positive and negative predictive values of sonography were low: 93.4%, 12.0%, 79.4% and 33.3% for at least one positive criterion, and for at least two positive criteria: 29.3%, 75.0%, 81.8% and 21.7%, respectively.

CONCLUSIONS: Our research has shown that currently used extracranial sonographic criteria for the detection of obstructive venous abnormalities in the IJVs are of limited diagnostic value. For the time being, diagnosis of this vascular pathology should be given using catheter venography.

PMID 22528692 [PubMed - as supplied by publisher]
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Re: Dr Freedman at AAN

Postby Robnl » Sun Apr 29, 2012 2:12 am

Totally right CeCe.....while ccsvi-experts are trying to optimize diagnosis, some doctors are trying to ''dismiss' ccsvi....weird isn't it??
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Re: Dr Freedman at AAN

Postby Billmeik » Mon Apr 30, 2012 9:26 pm

Im trying to imagine a conversation between Freedman and Fox, both neuros.
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Re: Dr Freedman at AAN

Postby Robnl » Tue May 01, 2012 2:28 am

Yeah, or invite Freedman to the SIR Conference or Dr Scalafani's symposium :wink:
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Re: Dr Freedman at AAN

Postby 1eye » Tue May 01, 2012 9:08 am

I'm trying to imagine Dr. Freedman at SIR. But I can't. Must be a cognitive thing.
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Re: Dr Freedman at AAN

Postby Cece » Tue May 01, 2012 12:18 pm

Robnl wrote:Totally right CeCe.....while ccsvi-experts are trying to optimize diagnosis, some doctors are trying to ''dismiss' ccsvi....weird isn't it??

Yes, very odd, and at times unprofessional.
The research is what it is. The imaging studies are a mixed bag. But there's enough being found in different studies, as seen in the Canadian meta-analysis, that there is clearly a discovery here.

It would be interesting to get Dr. Freedman to ISNVD, which is the most CCSVI-focused of the big conferences. Would he rant? Would he find fault with every presentation and maintain his beliefs? Would he be open to new information? If he is going to be giving soundbites on CCSVI, I'd like it if he were more informed.
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