Dr. Mehta's clinical trial prelim. results announced-

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

Dr. Mehta's clinical trial prelim. results announced-

Postby cheerleader » Mon Jul 18, 2011 11:37 am

News from Chicago vascular conference:

link to article

Preliminary data from a series of multiple sclerosis patients who underwent percutaneous transluminal venoplasty to treat chronic cerebrospinal venous insufficiency suggest that the treatment was safe and offered significant disease-specific and quality of life improvements.

The results of the controversial treatment on 125 patients in the series will need to be validated with future randomized, blinded, controlled trials that evaluate endovascular and surgical options, Dr. Manish Mehta said at the Vascular Annual Meeting.

The 125 patients included in the study had a mean age of 47 years, and 62% were female. Relapsing-remitting MS accounted for 54% of the patients, followed by secondary-progressive MS in 34% and primary-progressive MS in 12%.

The patients had a total of 230 lesions (Note--in this context, "lesions" refers to jugular vein irregularities that create stenosis, not brain lesions) altogether, 90% of which involved the internal jugular veins; the majority of these were at the origin. The remaining 10% of patients had stenoses in their azygous veins.

The mean degree of occlusion was about 80%, with approximately 1.8 (stenotic jugular vein) lesions per patient. Immediate success (defined as less than 20% residual stenosis) occurred in 82%. The remaining patients underwent a second venoplasty without stenting.

In all, 79 patients were available for follow-up at a mean of 4.5 years. Restenosis of 50% occurred in eight of these patients, occlusions occurred in two patients, and one patient had new-onset atrial fibrillation.

The investigators reassessed 48 patients with the EDSS (Extended Disability Status Scale) following initial baseline testing. From before to after the procedure, "there was a statistical improvement. Improvements occurred in each of the MS types, except in primary progressive MS," Dr. Mehta said.

Reevaluations of 79 patients who performed a timed 25-foot walk at baseline showed a significant improvement in walking speed. In terms of MS quality of life, from before to after the procedure "there were significant improvements in physical and mental ability. There clearly seems to be a trend. In the modified fatigue impact score, there also seems to be a clear improvement," he said.

Dr. Mehta also said that there was a trend toward improvement in balance, lower-extremity weakness, incontinence, coordination, and vertigo in more than 80% of patients.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby 1eye » Mon Jul 18, 2011 12:22 pm

Better than anecdotal, I would say. Reproduces some of Dr. Zamboni's findings pretty closely.
"Try - Just A Little Bit Harder" - Janis Joplin
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'MS' is over - if you want it
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Postby Cece » Mon Jul 18, 2011 12:45 pm

The investigators reassessed 48 patients with the EDSS (Extended Disability Status Scale) following initial baseline testing. From before to after the procedure, "there was a statistical improvement. Improvements occurred in each of the MS types, except in primary progressive MS," Dr. Mehta said.

Reevaluations of 79 patients who performed a timed 25-foot walk at baseline showed a significant improvement in walking speed.

Quantification!
I would have liked to have seen improvements in EDSS for the PPMS group too.
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Postby cheerleader » Mon Jul 18, 2011 6:58 pm

1eye wrote:Better than anecdotal, I would say. Reproduces some of Dr. Zamboni's findings pretty closely.


Very, very similar to Dr. Z's endovascular study, in terms of quality of life improvements, reduced fatigue, reduced incontinence, reduced dizziness, better timed walking--and sadly, the lack of real, measurable improvements for those with PPMS. Doctors have long surmised that PPMS may be a different disease involving axonal and Wallerian degeneration. I'm with Cece, I wish we were seeing more hope for PPMS....
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http://ccsviinms.blogspot.com
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Postby rainer » Mon Jul 18, 2011 7:18 pm

So this wasn't randomized, blinded, or controlled?
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Postby Cece » Mon Jul 18, 2011 7:28 pm

Doctors have long surmised that PPMS may be a different disease involving axonal and Wallerian degeneration.

I didn't know that.

But if pwPPMS have CCSVI, it seems logical that the CCSVI played a role in the disease process.

The young man, Jason DaSilva, from the documentary aired at the AAC symposium patient day, had PPMS. CCSVI treatment did not do much for him. I wish it had.
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Postby newlywed4ever » Tue Jul 19, 2011 7:40 pm

Does anyone know if the Jason DaSilva documentary is available for viewing elsewhere?
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Postby Cece » Tue Jul 19, 2011 7:46 pm

This is why you should have flown in for patient day... :D

I don't believe it will be available for showing until it premieres on PBS and I do not know when that'll be. There is a trailer on his website....
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Postby newlywed4ever » Tue Jul 19, 2011 8:03 pm

Oh, how I wish I could've been there! I googled Jason DaSilva documentary ... didn't realize that it hadn't been on PBS yet. Thanks, Cece!
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Postby marcstck » Tue Jul 19, 2011 8:58 pm

Cece wrote:
Doctors have long surmised that PPMS may be a different disease involving axonal and Wallerian degeneration.

I didn't know that.

But if pwPPMS have CCSVI, it seems logical that the CCSVI played a role in the disease process.

The young man, Jason DaSilva, from the documentary aired at the AAC symposium patient day, had PPMS. CCSVI treatment did not do much for him. I wish it had.


There is a relatively new theory regarding both SPMS and PPMS, which states that a rogue immune system develops within the confines of the CNS in the progressive stages of the disease. There've been findings of tertiary lymphatic organs in the CNS of progressive patients, very much like what is seen in the joints of patients with RA. These organs produce aberrant immune cells, primarily B cells, which perpetuate the progressive disease process.

Given this scenario, even if CCSVI plays an initial causal role early in the disease (RRMS in the case of SPMS patients, perhaps during some invisible disease state early in the PPMS process), treating for it once this tertiary lymphatic system develops may very well have limited effect on the patient.

This scenario elegantly explains why systemic immunosuppression, which is often effective in RRMS patients, is completely ineffective in patients with progressive disease. The immunosuppressive drugs don't cross the BBB, and thus don't affect this rogue immune system. The NIH is currently doing testing on the use of Intrathecal Rituxan on SPMS patients, and my neurologist has long been using intrathecal methotrexate to treat his progressive patients, with some very impressive results:

http://www.msrcny.org/pdfs/Intrathecal% ... erosis.pdf

I'm planning on doing a blog post on this sometime soon, with links to a lot of the relevant research…
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Postby cheerleader » Tue Jul 19, 2011 9:12 pm

Marc...I had to read your post 4 times to understand it (red wine or medical complexity, you be the judge) but it's really interesting...the supposition is that the t and b cells are not breaking thru the blood brain barrier in progressive MS (thus no inflammation.) They're already on the "other side" inside the brain, wreaking havoc. And since the DMDs don't cross the BBB, they are of no help. Makes sense.

I really, really hope this affords some answers for you, Marc. Combined with autologous stem cells, maybe? Since Jeff and I had helped Jason and his wife find testing and treatment for CCSVI, we've been hoping he'd see more relief from his angioplasty. Man, I really hate MS...
looking forward to your next blog post-
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby marcstck » Tue Jul 19, 2011 9:30 pm

cheerleader wrote:Marc...I had to read your post 4 times to understand it (red wine or medical complexity, you be the judge) but it's really interesting...the supposition is that the t and b cells are not breaking thru the blood brain barrier in progressive MS (thus no inflammation.) They're already on the "other side" inside the brain, wreaking havoc. And since the DMDs don't cross the BBB, they are of no help. Makes sense.

I really, really hope this affords some answers for you, Marc. Combined with autologous stem cells, maybe? Since Jeff and I had helped Jason and his wife find testing and treatment for CCSVI, we've been hoping he'd see more relief from his angioplasty. Man, I really hate MS...
looking forward to your next blog post-
cheer


Yes, cheer, that's it exactly. In theory, the nasties are originating inside the CNS of progressive patients, thus no inflammation, and out of reach of the current DMDs.

I'd say your having to read my post four times is probably more due to the clumsiness of my explanation than with your intellectual faculties (whether under the influence or not).

My blog post on this is probably a few weeks away, first I'm going to finish posting the symposium essay, and then there are a few other topics I want to tackle. I'm still making my way through a lot of the research on this theory, much of which is quite dense. My recent visit to the NIH restarted my interest, when I was told of their SPMS study based on these findings…
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Postby MrSuccess » Tue Jul 19, 2011 11:00 pm

I understand [ thanks to Dr.Zivadov ] what the Neurologist's are asking for. I get it.

I understand what the IR's , are doing . I also .... get that .

This is what I ..... Do Not ....... get.

A common saying is .... " it's like comparing apples to oranges ".

Try that some time . :roll:

Our Neurologist's [ and other doctors ] have always looked to Trials and the published reports ..... for drug v. new drug ....... or drug v. placebo in their quest to treat. More or less ........ " apples to oranges "

We now have a new - but still unproven - method of treating a medical condition [ MS ] ........ that uses no drugs . We label it CCSVI , for the sake of simplicity .

To compare the two competitive camps ..... is like comparing " apples to baseballs ". Two absolutely completely different ways and means of treating a mysterious medical condition -MS- .

To apply the same methods of testing new drugs ...... to a already common medical procedure ....... baffles Mr.Success.

I'm open to ideas .



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Postby Cece » Wed Jul 20, 2011 7:07 am

I'll look forward to that blog post, Marc. I would not have guessed a tertiary lympathic system was even possible.
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Re: Dr. Mehta's clinical trial prelim. results announced-

Postby fogdweller » Wed Jul 20, 2011 12:40 pm

cheerleader wrote: Improvements occurred in each of the MS types, except in primary progressive MS," Dr. Mehta said.



I have had angiplasty for my CCSVI, I have PPMS, and unfortunately this has been my experience. I have apparently restenosed somewhat, but the doctor who did my follow-up suggested that since I had not had improvement from my first treatment, he did not think that retreating me would likely result in any different result. He suggested I forgo retreatment at this time, and I took his advice.
I think that the IRs are beginning to get a feel for how patient's respond. Unfortunately, those of us that have PPMS may not be part of this exciting step forward.

I am really anxiously awaiting Marscstk's posting of the new theory.
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