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

Postby patientx » Fri Jul 24, 2009 4:25 am

cheerleader wrote:It is a thorough methodology and also includes cognitive function and fatigue, something sorely lacking in the EDSS scale (and the reason Jeff's EDSS was so low, but his mental disability was so high.)


I don't believe the MSFC includes a measure of fatigue (at least not the one I take every 3 months). It may be included in the QoL survey, which is only administered once per year.


Does anyone know the time frame for this study? In the paper, he mentions the study was approved by the ethical committee in Feb. of 07, but when were the patients treated, and what was the end date for observation?
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Postby patientx » Fri Jul 24, 2009 4:49 am

scorpion wrote:Was there anyone who experienced a relapse after the procedure but had no blockage??


This question, at least, was addressed in the paper.

"All patients with restenosis corresponded to those who manifested relapses in the year subsequent to the endovascular treatment. Symptomatic and asymptomatic restenosies were again treated with balloon dilatation."


In other words, all who had relapses had some restriction.
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Regarding the quality of the paper

Postby fernando » Fri Jul 24, 2009 4:50 am

Hi,

IMHO this paper was meant to be presented at a vascular symposium, not a peer reviewed "neuro" magazine. Its audience are vascular doctors. And as Ernts says (and the article clearly states), it's preliminary. Maybe that is why it lacks MRIs and the reason it appears to some as it couldn't appeal to a neuro (even more if this neuro is stuck in his politically correct view of this disease).

Anyway, I can understand some dose of skepticism, but this is (IMHO) very different from other research, here we have a very defined pathological finding, the stenosis of veins that disturbs the flow of blood from the brain and spine. And I think that this finding, the stenosis, is clearly proven beyond doubt imho (and the photos from this paper are amazing!). Of course, there remains the causality to be "proved" (which this paper addresses, btw).

And yes, we need another study replicating this findings, but if they find that the only people that have relapses are the ones whose veins got blocked again, well .....

Fernando

PS: I'm Fernando from Argentina. I have been lurking in this site for about a year. I'm waiting for confirmation but my neuro says he's pretty sure I have ms. Please, consider this as my introduction. Btw, I'm not a doctor just a patient.

PS: Thank you to all the people here, especially to Cheer, Jeff, Marie and Chris. You are very brave and smart and full of passion, your stories have inspired me. Really, thank you.
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Postby Loobie » Fri Jul 24, 2009 5:56 am

Whoa 8O
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Postby whyRwehere » Fri Jul 24, 2009 6:13 am

Well, Wobbly said he was going to be tested again, so maybe they are getting more numbers for the people who need them.
This is a physical deformity, which whether or not it causes MS, is helping the body to function better, if it is fixed. That can't be a bad thing. I would rather my husband fix something in his body, than keep trying to medicate with substances which seem to make him feel worse; drugs which are only trying to stem the tide of the disease not cure it, and which have failed in doing so. (Definitely, in his case).
I thank Cheer for her tireless fight with this information. It could make some people very frustrated, but she never gives up, Bravo.
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Postby peekaboo » Fri Jul 24, 2009 6:19 am

Welcome Fernando -

Keep us posted on your dx and any other news you wish to share.
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Postby Arcee » Fri Jul 24, 2009 6:25 am

Fernando, welcome! Glad you are de-lurking as I think your comments are really helpful. The context for this paper does really matter. And we know from the original Zamboni abstract that he knows how to do the peer-review, rigorous, fully-respectable-data-presentation of a study, so it seems like a full-blown version will be forthcoming.
The role this site plays in so many individuals' understanding of MS and ways of dealing with it is really amazing. (hmm, that reminds me to donate when I can...) Best of luck as you continue to figure out what your situation is all about.
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Postby Jamie » Fri Jul 24, 2009 7:02 am

I'm glad Fernando pointed out this this is the article extract from a symposium that was given to like minded people, not a full scientific paper.

Interesting to see the Americans scream 'why no MRI's??' - do you have ANY idea how difficult it is to get an MRI in Europe? People are put in waiting lists for 6 months to get one.

I don't care about all that anyway, what I do care about is the fact at 100% of people who relapsed had further blockages and their relapses stopped within a few days as a result of re-stenting.

That is proof as far as I am concerned. Also Mel was at the end of a month long relapse with still left side defecits and weakness and pain and that was all gone within 2 days of stenting (in fact almost immediately after she got the weird hearing issue that lasted a day or so).

What excites me is that Zamboni obv. didn't have the technology originally to stent in the IJV but now can do that with the IJV so the treatment is evolving and improving already.

What a day!
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Postby chrishasms » Fri Jul 24, 2009 7:37 am

123
Last edited by chrishasms on Sun Dec 06, 2009 11:56 am, edited 1 time in total.
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Postby notasperfectasyou » Fri Jul 24, 2009 8:53 am

The paper is silent about SPMS and PPMS patients. Will this be coming out later? Ken
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Postby Needled » Fri Jul 24, 2009 9:15 am

Arcee wrote:
The role this site plays in so many individuals' understanding of MS and ways of dealing with it is really amazing. (hmm, that reminds me to donate when I can...)

I still get the shakes when I remember how the site was down for a couple days in May. A good way to remember to donate is to use the anniversary of the date you were diagnosed. It's not an easy date to forget!!
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Postby Rokkit » Fri Jul 24, 2009 9:20 am

notasperfectasyou wrote:The paper is silent about SPMS and PPMS patients. Will this be coming out later?


That bothered me, too, but I really think this preliminary paper went for "the most bang for the buck" which was found in the quick resolution of relapse in RRMS. I can't imagine them not publishing the full results of everyone in the study at some point. Hopefully Sep 8.

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Postby patientx » Fri Jul 24, 2009 10:22 am

On the question of MRIs, cost may have been a factor. I read that in one of the interferon trials (can't remember if it was Betaseron or Avonex), that the trial coordinators decided to add MRI studies. The estimated additional cost was $1 million (and this was in the late '80s, early '90s).


In order to gain wider acceptance, MRIs will almost certainly have to used in the future. This despite the fact that not all doctors put the same weight on MRI imaging. The staff at the MS center where I am treated like to remind that they use the clinical picture to guide treatment, more than MRI results (though I don't necessarily agree with this approach).

It's a bit of a shame; this study's authors had a unique opportunity here, since they were treating some people in the midst of a relapse. They could have done an initial MRI to see if Gd enhancement was present. Then, shortly after the angioplasty, performed another MRI to see if the enhancement went away. This would provide data along the lines of what NIH was suggesting to you, Marc.
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Postby MaggieMae » Fri Jul 24, 2009 10:45 am

cheerleader wrote:Dr. Dake has seen mostly RRMS patients, and they typically have jugular stenosis only. The few primary/secondary progressive patients he's seen (I think it's 5 now- not all on are the site) have all had azygos blockage. What Dr. Dake has not found is azygos blockage in RRMS patients, which Zamboni did (in a few) This may be a genetic variant or just an anomaly.


Do I not understand the correct definition of secondary progressive MS. Isn't secondary progressive when an individual after having RRMS for a period of time moves into the next stage when they no longer have inflamation and relapses, but a steady decline. If that is correct, why would the blockage not be in the azygos when RRMS, and then be found in the azygos when they became secondary progressive? I know that the RRMS have internal jugular stenosis, but do the secondary progressive have IJS also in addition to the azygos stenosis?
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Postby Arcee » Fri Jul 24, 2009 11:34 am

Just a thought regarding the MRI issue...
perhaps the difficulties in doing MRIs in Europe contributed to Zamboni doing the new study here in the US. I have no idea about global MRI access and cost differentials, but assuming Jamie is correct, it may explain something I have been wondering about - - why did they set up shop here in the US for this new round of research that clearly involves a lot of imaging? Maybe part of the reason involves addressing this concern, that a US audience/market in particular, may have.
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