NEW: BNAC and Zivadinov Review in Neurotherapeutics

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

NEW: BNAC and Zivadinov Review in Neurotherapeutics

Postby cheerleader » Wed Aug 24, 2011 2:30 pm

Abstract--
Chronic cerebrospinal venous insufficiency (CCSVI) was recently described in multiple sclerosis patients. CCSVI is characterized by impaired brain venous drainage due to outflow obstruction in the extracranial venous system, mostly related to anomalies in the internal jugular and azygos veins. The current CCSVI diagnosis is based on Doppler sonography of extracranial and transcranial venous hemodynamics criteria. To date, prevalence estimates of CCSVI, provided by different groups using various imaging methods of assessment, vary widely from none to 100%. There is an urgent need to define and validate the spectrum of cranial/extracranial venous anomalies and to establish reliable, diagnostic gold-standard test(s). The potential usefulness of endovascular treatment for CCSVI in multiple sclerosis patients is still unknown.

http://www.expert-reviews.com/doi/abs/1 ... ern.11.117

I have the full paper, and is is a very thorough review of all of the studies completed in the past 2 years. The doppler US has become a huge stumbling block, because it is not being done consistently around the world.

In our view, a major methodological point is that the CCSVI diagnosis is mainly based on extracranial and transcranial echo- color Doppler criteria, which are operator-dependent, suggesting a need for standardized training....

The CCSVI diagnosis combines functional and structural intra- and extra-cranial venous abnormalities in a single composite. Previous CV studies in MS [17,18,23,25] proposed that the extracranial venous anomalies are likely to be truncular venous malformations [48] characterized by intraluminal defects (such as flaps, webs, septums, membranes and malformed valves) or by extraluminal abnormalities represented by stenoses of the venous wall. In a recent study, 150 MS patients showed a significantly higher number of total and intraluminal structural and functional abnormalities on Doppler sonography compared with 63 healthy controls, while 46 progressive MS patients presented with significantly more extraluminal abnormalities than 104 nonprogressive MS patients [46]. These findings suggest that the majority of CCSVI pathology is confined to the intraluminal portion of the extracranial veins, which requires high-resolution B-mode imaging for visualization of these abnormalities.


But MRV is also helpful....
Our group established that the assessment of possible prominence or collateralization of the remaining veins in the neck by MRV is more accurate than with Doppler sonography [34,46]. In addition, we found that MS subjects tend to have more collaterals than controls, but collaterals are also frequent in subjects with normal Doppler or MRV findings [34,46]. This suggests that collaterals prob- ably represent physiological variations of the venous system that may play a compensatory role when there are more venous extracranial stenoses present.

As I've stated before, Jeff's doppler at Stanford looked fine, since it misread the collaterals as his jugulars.....it was the stenosed jugulars and squirrely collaterals on MRV that gave the indication of his problem. And of course, venography remains the final word.

Buffalo urges for continued studies. Treating CCSVI has helped many patients.

In a recent prospective, 12-month Endovascular Venous Treatment for MS (EVTMS) follow-up study that enrolled 15 MS patients, we investigated whether percutaneous trans luminal angioplasty (PTA) can reduce disease activity when used in addition to standard medical treatment [82]. Although we did not assess quality of life or neuropsychological out- comes in that study, we noticed that the majority of the treated patients reported immediate temporary improvements in subjective complaints of fatigue and cognitive impairment post- intervention [82]. In another recent study, the re-establishment of cerebral venous return reduced chronic fatigue perception in a group of 31 MS patients with CCSVI who underwent the endovascular procedure, suggesting that fatigue could probably be associated with CCSVI.

These data may suggest that reduced cerebral perfusion in MS patients is related to the presence and severity of venous out- flow blockages characterizing CCSVI. To test this hypothesis, a recent pilot study of 16 patients with MS and eight healthy subjects [81] investigated whether hypoperfusion of brain parenchyma is related to impaired venous outflow. It was found that hypoperfusion of the brain parenchyma in MS, but not in healthy controls, was associated with the presence and severity of CCSVI. Decreased CBF GM and WM regions of the brain parenchyma showed a strong relationship with increased severity of CCSVI. These preliminary findings are from a small group of subjects and should be confirmed in a larger cohort of MS patients [84].

The EVTMS pilot study was neither randomized nor blinded and, because its sample size was small, no conclusions can be drawn regarding clinical efficacy [82]. However, there was a trend for lower T2 lesion volume and relapse accumulation in the immediate, compared with the 6-month delayed, treatment arm over 12 months, indicating that PTA could potentially enhance the effect of medication given to patients with MS. Another pilot, double-blinded, pla cebo-controlled, randomized study (PREMiSe) of 30 MS patients organized to preliminarily assess the safety and efficacy of PTA for venous stenoses in MS patients presenting with CCSVI over 1 year was initiated (Figure 7). A larger multicenter, double-blinded, randomized, placebo-controlled trial, entitled BRAin VEnous DRainage Exploited Against MS (BRAVE DREAMS), will assess the safety and efficacy of PTA treatment for CCSVI over 1 year.



onward,
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby NZer1 » Wed Aug 24, 2011 2:52 pm

Testing by using IVIS and PTA.
There is no doubt in a good IR's mind that there is going to be blockages. The belief that there needs to be an external exam is the stumbling block at the present time in CCSVI acceptance.

If there are 20,000 as suggested who have had treatment the number found to have anomalies is sufficient proof?

Is it necessary to be an external exam?

The safety of inspection only by IVIS/ catheter inspection is safe, is it not?

It seems that there needs to be a clear line between best method of inspection or identification, and then the PTA procedure. They each have different 'risks' and there is results that have shown that the dye for instance is one challenge and the catheter not entering the brain for instance another risk.

Its like saying that driving at the speed limit is safe and no alcohol is safe but speeding and a drivers impairment has 'risk'.

Ivis, Catheter inspection and then PTA if treatment required to increase flow and stop reflux and pressure waves breaching the BBB. :wink:
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Postby Cece » Wed Aug 24, 2011 2:56 pm

Is it necessary to be an external exam?

The safety of inspection only by IVIS/ catheter inspection is safe, is it not?

The venogram is invasive, as compared to the noninvasive doppler. There are certain risks with any invasive procedure.

On the other hand, as a person with MS, I would not have wanted to settle for a doppler ultrasound if the doppler had not shown CCSVI. Venogram plus IVUS was the gold standard so that was what I wanted. Anything less would have been not a full interrogation, imo.

Cheer, thanks for posting this.
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Postby NZer1 » Wed Aug 24, 2011 3:09 pm

Cece why is invasive an issue?

If there is a common or known problem and that the way to treat the problem is similar to the test, how could it be seen as an issue in today's terms.

Sure when things were first getting underway there was a need to get beyond the barriers that were in place, now is a whole new ball game!

Just been talking with Aust CCSVI and it appears that IVIS is not used over there and that there is a high restonosis rate first time around with poor outcomes and delays in the system to being retreated, presumably because the first treatments were done as trials and therefore issues have arisen about appropriate management of issues within the trial.
I do wonder what would the out come have been like if a. IVUS had been used and b. if there was more communication with IR's such as Sal?

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re

Postby jean-la-grenouille » Wed Aug 24, 2011 4:19 pm

Thanks Cheer for this post, I'm waiting for the results of the canadian studies...is there any critical data to be released soon ?

Cece, you were really decided to get treated...I prefer wait and see before taking any risk...maybe I'm a coward !
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Re: re

Postby cheerleader » Wed Aug 24, 2011 5:02 pm

jean-la-grenouille wrote:Thanks Cheer for this post, I'm waiting for the results of the canadian studies...is there any critical data to be released soon ?

Cece, you were really decided to get treated...I prefer wait and see before taking any risk...maybe I'm a coward !


Hi Jean-
The first Canadian studies completed will be the tests looking at association of CCSVI and MS, and those results will be released in the summer of 2012. I don't expect Canadian venoplasty treatment studies will be completed for two to three years after that. BNAC is enrolling more patients in their PREMISe study, and Dr. Zamboni is starting his 500 person study. Dr. Siskin and Mehta are still in the midst of their clinical trials, and Dr. Dake has yet to begin. It's going to be awhile, but this is pretty fast considering the ground that has to be covered.

Nothing to do with bravery or cowardice. Jeff was treated by a local doctor who understood venous disease and he has been able to have regular followup and retreatment covered by insurance...and in Canada, that is not a reality. I don't blame you for waiting...not one bit.
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Postby Cece » Wed Aug 24, 2011 7:16 pm

If I'd had to find $10,000 before I could be treated, that would have slowed me down some. But yes, I was determined. CCSVI made a lot of sense with my particular symptoms. I think people with more severe stenoses are more affected by the hypoxia itself, not the MS lesions, but directly the hypoxia. I have not felt ill since the procedure the way I used to, all the time. Chronically ill meant chronically ill. Ill-being instead of well-being. Oh, the good ol' days.... It feels good to be better.

I don't think it's cowardice at all to wait. Fools rush in where angels dare to tread and all that. I have no doubts that CCSVI is real and that it is deeply entwined with the disease of multiple sclerosis but I do have doubts that the treatment of it is at its best yet and also not standardized, so patients get different versions of treatment from different doctors.
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Postby 1eye » Wed Aug 24, 2011 7:48 pm

Cece wrote:If I'd had to find $10,000 before I could be treated, that would have slowed me down some. But yes, I was determined. CCSVI made a lot of sense with my particular symptoms. I think people with more severe stenoses are more affected by the hypoxia itself, not the MS lesions, but directly the hypoxia. I have not felt ill since the procedure the way I used to, all the time. Chronically ill meant chronically ill. Ill-being instead of well-being. Oh, the good ol' days.... It feels good to be better.

I don't think it's cowardice at all to wait. Fools rush in where angels dare to tread and all that. I have no doubts that CCSVI is real and that it is deeply entwined with the disease of multiple sclerosis but I do have doubts that the treatment of it is at its best yet and also not standardized, so patients get different versions of treatment from different doctors.


Risk is very changeable. Certainly one's opinion changes after the first disability that won't go away. Risk for some is in waiting, if there is anything else that can be done.

BTW it's: "where angels fear". If they dare, I dare right behind them. I think there are quite a few fearful angels around still, and thank heaven they will continue to be well enough to wait.
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby Cece » Wed Aug 24, 2011 8:06 pm

lol, I read over what I'd written before I posted, I didn't catch that at all. Thanks. :)
Risk is very changeable. Certainly one's opinion changes after the first disability that won't go away. Risk for some is in waiting, if there is anything else that can be done.

Well said. As usual.

Also there is risk in having positive CCSVI doppler results and not yet moving heaven and earth (which might shake up those angels...) to get re-treated.

By which I mean, there is a possibility of fund-raising, there is a possibility that our good doctor might get his hands on you, and I have been wondering if possibilities will become realities. Couldn't happen to a nicer guy, if it did.
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Postby cheerleader » Thu Aug 25, 2011 8:06 am

I have to say, this review is worth the $ to get the whole paper.
Dr. Zivadinov goes thru the entire history, how he and his team trained the doppler protocol with Zamboni, how they added MRV, what they found (mostly intraluminal defects) and how they've treated these with angioplasty. It discusses results of PTA and the need for large scale clinical trials. And it's written by a team of neuros for a neurological journal. Saying that CCSVI is real. A good publication,
cheer
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Cece » Thu Aug 25, 2011 8:28 am

cheerleader wrote:I have to say, this review is worth the $ to get the whole paper.
Dr. Zivadinov goes thru the entire history, how he and his team trained the doppler protocol with Zamboni, how they added MRV, what they found (mostly intraluminal defects) and how they've treated these with angioplasty. It discusses results of PTA and the need for large scale clinical trials. And it's written by a team of neuros for a neurological journal. Saying that CCSVI is real. A good publication,
cheer

I didn't catch that before. Excellent!
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Postby MrSuccess » Thu Aug 25, 2011 12:15 pm

my first thought was to suggest that this report be published either here at TIMS or the CCSVI Alliance ....... for free.

Now , I have a better idea.

I would suggest that pwMS , ask the BNAC for a copy of the FULL paper ....... along with a generous donation to the BNAC. :idea:

This will help raise more funding for this great work to continue.....

Then ......... upon recieving your copy ........ stick it in an envelope and mail it to your Neuro ...... or your doctor ....... or someone you think can get this ball rolling ........

Do not include your name ..... or any other papers ..... just the BNAC report.


It's just an idea.



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Postby cheerleader » Thu Aug 25, 2011 12:55 pm

BNAC will be offering a free, non-medicalese translation of the full paper, for lay readers. From their Facebook page:


On 8/24/11 Expert Reviews: Neurotherapeutics released a demyelinated diseases themed article, “Chronic cerebrospinal venous insufficiency in multiple sclerosis: diagnostic, pathogenetic, clinical and treatment perspectives.” Dr. Robert Zivadinov is the lead author of the article that appears in the September 2011 edition of this journal, available by subscription.

For the benefit of MS patients and readers who are not neuroscientists, The Buffalo Neuroimaging Analysis Center Advisory Council is preparing a digest of the article that will be posted on BNAC Facebook sites “BNAC CCSVI Study” and “BNAC Study.” Thank you for your interest in BNAC’s research.

BNAC is a division of University at Buffalo’s Neurology Department: The Jacobs Neurological Institute

so, you can save $60.00 and get it on Facebook-
cheer
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Postby MrSuccess » Thu Aug 25, 2011 1:18 pm

that's great ... but how does that help the BNAC raise and recover the money spent on behalf of pwMS or pwCCSVI ?

They need $$$$ to further their research .

I like my suggestion better ...... but either way ...... let's get that document into the hands of the Neurological community.





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.

Postby Lyon » Thu Aug 25, 2011 4:38 pm

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Last edited by Lyon on Sun Nov 20, 2011 3:48 pm, edited 1 time in total.
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