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

Postby patientx » Sun Jul 26, 2009 5:16 pm

cheerleader wrote:
patientx wrote:I would really like to see others perform these vascular scans, to validate the results seen by Zamboni and Dr. Dake.


So far, the following doctors/universities have recognized CCSVI/are utilizing the current technology to locate venous insufficiency: Jacobs Neurological Institute (SUNY Buffalo), Dr. Guilio Gabbiani (University of Geneva) Dr. Marian Simka (Poland), Dr. Claude Franceschi (Paris), Dr. Michael Dake and Dr. Zamboni's team. These are the ones that have publically stated their current studies on CCSVI. There may be others who are unannounced at this time. We're just six months in to this. The Bologna conference is a little over a month away.
cheer


Thanks Cheer, I didn't know about Dr. Gabbiani or Dr. Franceschi.
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Postby bibliotekaren » Sun Jul 26, 2009 8:57 pm

This newbie should likely stay in the wading pool, but I see the other kids in the deep end and there's lots of splashing going on. So, like a moth to the flame...

My interest has been pretty piqued since first coming across CCSVI info here. I've been cracking the old anatomy/physiology books and comparing with my medical reports and having lots of ah-ha moments.

This last fall I had surgery for a benign brain tumor that was sitting smack on a major venous drainage-- occluding it completely. My MRV was quite a sight. The sinus reconstituted on the other side indicating collaterals that had been developed. Well, both the sinus and likely the collaterals were sacrificed to the brain tumor Gods for the sake of surgically removing all of the tumor (it's the type that can grow back). So now I have a small dancehall in this part of my brain's venous drainage with a "presume organized clot" in the next, and a "dominant right IJV." Yikes! I won't even go into the sounds and sensations associated with this.

I'm one of those atypical folks that wouldn't make it into a trial. I definitely have a demyelinating disorder that my Neuro calls atypical MS -- not probable MS as I'm definitely well into the game. While some of my symptoms have remitted, my function continues to erode. I feel as though I'm watching my life shrink to the size of a postage stamp. I struggle with working and contemplate what type of shanty I should rent if I need to do SSDI. My Neuro does support me checking this out due to my unusual history. I've talked to Dr. Dake but will likely book for the Fall as I need to drop my iron levels and switch out a med first.

So, I'm keen enough on CCSVI to look into it personally and possibly consider another invasive treatment albeit one that is quite a bit more palatable than the last one. This is not without concerns. I also support us continuing to open-mindly question the endless plethora of variables and their interplay. It's mind boggling to think of the venous formation varieties and their etiology, genetic anomalies, virus/environmental exposures, etc. at play here. I don't believe that questioning the variables at play and a study's methods equates to disparaging the researcher, dismissing CCSVI as not promising, or invalidating those of us open to seeking CCSVI treatment. I'm looking forward to more studies and shaking the tree.

I so appreciate those who have tirelessly promoted CCSVI so it can get off the ground and hopefully get larger and continuously tighter studies to see where it fits into the MS story. I've thought of you often Cheer when I try to get my nerve up to show it to a doc. And, I appreciate those who highlighted the context of this last paper -- that it's not the end result.

Best to all,
Donna
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Re: "Significant"

Postby NHE » Mon Jul 27, 2009 1:55 am

Lyon wrote:I agree with your point that in these uncertain circumstances I can't define "significant" BUT, even with the best efforts of modern science it's pretty hard NOT to come up with a "significant" margin of error in these conditions. Additionally, from my end of the argument "significant" only has to be a variation from 100% or 0% which is hideously likely.


The word "significant" is often both overused and misused when discussing science. However, in scientific research the word has a precise meaning. Data is considered significant only if the calculated statistic lies outside of the 95% confidence interval (P is less than 0.05). In effect, given a standard bell curve which represents a population, a 95% confidence interval will consist of 95% of the data under the bell curve and there will be 2.5% at either end which represents a region of the bell curve where data will be significantly different from the mean. If the calculated statistic, a mean for example, falls into this region, then and only then can we call it significant.

Now that we have ventured off into the nether regions of obscurity, we can return to focussing on the topic.

NHE :peace:
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Postby Loobie » Mon Jul 27, 2009 3:41 am

bibliotekaren wrote:I'm one of those atypical folks that wouldn't make it into a trial. I definitely have a demyelinating disorder that my Neuro calls atypical MS -- not probable MS as I'm definitely well into the game. While some of my symptoms have remitted, my function continues to erode. I feel as though I'm watching my life shrink to the size of a postage stamp. I struggle with working and contemplate what type of shanty I should rent if I need to do SSDI. My Neuro does support me checking this out due to my unusual history. I've talked to Dr. Dake but will likely book for the Fall as I need to drop my iron levels and switch out a med first.


Best to all,
Donna


Donna,

Welcome. I am really intrigued that your doctors call it "atypical MS". Sounds like we may be redefining what 'typical MS' is. To me, and I'm a rube at this, wait until Marie or Cheer posts here, but it sounds like they are just becoming another player banging on the drum that we may be suffering from CCSVI and MS is how it plays out. Hey, you can't have "many scars" without something making those scars.

I just wanted to welcome you. I have had the surgery two weeks ago. Sounds like your Docs need a copy of Zamboni's paper!

Best of luck and stay active on here, you will learn a lot. Hell, go off the high board!
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Postby cheerleader » Mon Jul 27, 2009 12:51 pm

Welcome, Donna!
You picked quite a thread to come into the pool....but wade and splash away- the big kids seem to have moved on and gone into the deeper end, so it's a bit less scary (for now.)

You've been thru quite an ordeal, and I just want to say, sorry for that. Some very serious surgery, and life surprises you could have done without. Of course your story fascinates me...and I'm assuming Dr. Dake will relish viewing and potentially repairing your venous drainage. Please keep us posted.

I tell anyone who'll listen...don't let the doctors intimidate you. The research will speak for itself. If a doctor tells you it's foolish to pursue, they probably don't understand congestive venous myelopathy or the mechanism behind venous reflux, immune activation and demyelinating lesions (and most neuros/docs who don't know this subject and will try to disguise their ignorance with disdain...a common ploy.) Don't rest until you find doctors who get it.
stay in touch,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Jamie » Mon Jul 27, 2009 1:13 pm

Usually I'd jump right in, I like a good mass debate but the FACT is Mel had the surgery and the FACT is that she has zero symptoms, fatigue or indeed anything, CURRENTLY.

Therefore I've no motivation to argue the finer points.

Get it done or don't that's your choice.

Those who have will continue to give updates here, mine have been all positive, others have been mixed but all have been honest.

I really don't see what anyone has to lose in this though?
Last edited by Jamie on Mon Jul 27, 2009 3:06 pm, edited 1 time in total.
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Postby Frank » Mon Jul 27, 2009 1:54 pm

I'm currently reading through the full text of the "liberation procedure" paper and have a problem understanding the math at one point.

On page 75 (figure 3) it is said to show that the relapse rate after intervention decreased more than 4 fold (exactly 4,4). The relapse rates were 41% in the year pre-treatment and 25% in the year post treatment.

I would state that the relative change in relapse rate pre->post is 39.02%:
41 = 100%; The change is 41 - 25 = 16; 16 = x%
x = (100% / 41) * 16 = 39.02

What calculation gets to the 4.4 fold decrease in relapse rate?

Thanks
--Frank
Treatment: Gilenya since 01/2011, CCSVI both IJV ballooned 09/2010, Tysabri stopped after 24 Infusions and positive JCV antibody test, after LDN, ABX Wheldon Regime for 1 year.
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Postby mormiles » Mon Jul 27, 2009 2:21 pm

Lord have mercy! Beyond tiresome! But I've added a new hero to my list---Lew. I've been reading to my husband Steve some of Lew's comments on this thread and from his website. Steve really identifies strongly with you Lew, but he's not that verbal. Thanks for giving him a voice. And thanks for an infusion of that fighting spirit.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby cheerleader » Mon Jul 27, 2009 3:01 pm

Frank wrote:What calculation gets to the 4.4 fold decrease in relapse rate?

Thanks
--Frank


Hi Frank- I am by no means a statistician, but I think this information needs to be figured in, it is given along with the chart. Statisticians, please help :)
OR=4.4 (95%CI 1.5-13, p=0.0072)
OR is objective response rate, showing 4.4 fold decrease
CI is confidence interval of 95% (sampling of the mean)
at 95% confidence interval, 1.5-13 = 4.4 odds ratio

the mathematically challenged,
cheer
Last edited by cheerleader on Mon Jul 27, 2009 3:29 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Mon Jul 27, 2009 3:23 pm

..
Last edited by Lyon on Wed Jun 22, 2011 2:22 pm, edited 1 time in total.
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Postby scorpion » Mon Jul 27, 2009 4:00 pm

Anyone know how to apply for a patent????
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Postby mrhodes40 » Mon Jul 27, 2009 4:03 pm

There is a 95% confidence that the true result falls between 1.5-13 if the test is repeated by other people. The "95%" confidence interval is an important parameter for stats, you want to figure what the range is that others can count on with 95% probability that if they repeated the experiment their number would fall in that range.

this accounts for other factors like the sample size so that it gives you some idea of how it relates to the "population at large"

So those numbers do not play in to the 4.4 fold decrease, they are numbers that tell you about the statistic.

We need more information perhaps, the relapse rate is what is on the bar graph, but it is the probability of an MS attack is what their work showed decreased by 4.4 times.
I am not a statistician, this is my best understanding....
Last edited by mrhodes40 on Mon Jul 27, 2009 5:23 pm, edited 1 time in total.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby guitarguy » Mon Jul 27, 2009 4:10 pm

Jamie wrote:I really don't see what anyone has to lose in this though?


I disagree, having stents in the jugulars and having to have it monitered for the rest of your life, seems like a lot to me for something we don't really know if it will help us yet. I most likely missed some info on this. But isn't this the first time this has been done on jugulars? And what the long term effects are, such as complications that may come up in the future.

As hopeful as I am with this, I still am very caucious.
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Postby Terry » Mon Jul 27, 2009 4:43 pm

You made it up??


Well, I think so. But I have learned that I don't have many original thoughts, so who knows.


literally elegance in simplicity.


Ha, that's me- simple. I hope I get to elegant in simplicity someday. I'm working on it.

My 17 month old granddaughter is in my lap. She wants to reply, too. Here goes.

wss3`

And I WAS taking up for you, Bob.

Terry
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Postby Lyon » Mon Jul 27, 2009 5:30 pm

..
Last edited by Lyon on Wed Jun 22, 2011 2:22 pm, edited 1 time in total.
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