Results from Frankfurt-first 100 patients

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

Postby Liberation » Sun Jun 26, 2011 7:56 am

Hi guys,
I have not been around for a long time, so I was just wondering if there is any new development in connection to CCSVI. ...As far as I can see from the posts I read the same old debate is still going on... :)

scorpion wrote:I agree Mr. Success all studies should be posted here but it is important that the recent studies/trials finding not much of any correlation between venuous blockages and MS are taken serious as well. We owe this to people who come on this site to educate themselves on exactly where research stands regarding CCSVI and its possible implications for PWMS. As simple as it is for certain members to point out the flaws of any study not showing the results they wanted it seems they should not have problems finding the flaws in studies that are favorable to CCSVI. Since this forum has become a place where being right has become more important then the people we serve I propose to start a forum or blog where meaningful discussion can actually take place and as a result some of the members on this forum can continue to fuel their egos. Cheer this has nothing to do with you posting the study but with the reaction of some people to the apparent flaws in the study. I do wish at times you and others would be as adept at scrutinizing results you approve of as well as you do the ones you disapprove of but that would indicate some sort of objectiveness which is impossible when your mind was made up long ago about the consequences of "bad blood flow" to the brain.
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Postby scorpion » Sun Jun 26, 2011 8:07 am

munchkin wrote:Lyon

Your statement
"You have to wonder how many people selling Fords are REALLY going to find in their research that Chevy's are better and then publish that finding? Like the people who run the pharmas, treating IR's need to put food on the table at the end of the day. "

Are you saying that you agree that the pharmas are just as likely to look at their own self-interests before that of the recipients of their drugs?

I do have a question regarding the neuro's self-interests as well. The neuro I see at the MS clinic gets paid to treat me - although there is no treatment if I am not on a crab drug. How is this different from the IR's.

Scorpion


"Since this forum has become a place where being right has become more important then the people we serve"
Some people on both sides of the issue seem to have this problem, I came to this thread because I wanted to learn about CCSVI, not the drugs and I found my information - good, bad, and confusing. As a responsible adult I did my own research and I read the papers allowing me to make up my own mind. My duty to myself is to learn about all of the treatment possibilities.
I am not desperate or uninformed.



As soon s I post anything stating this forum is not a good place for differing opinions sure enough there is always someone waiting in the wings to confirm they are not desperate, uniformed, etc. I do not believe every single PWMS is not desperate or uniformed because when I was diagnosed I was certainly a little bit of both. You are saying we are not desperate for a cure?????
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Postby Cece » Sun Jun 26, 2011 8:14 am

Liberation wrote:Hi guys,
I have not been around for a long time, so I was just wondering if there is any new development in connection to CCSVI. ...As far as I can see from the posts I read the same old debate is still going on... :)

Data from a study that was presented by its authors as reducing the case for CCSVI was re-examined by another researcher to positively make the case for CCSVI and for CCSVI being causal for MS.

www.thisisms.com/ftopict-17014.html
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Postby munchkin » Sun Jun 26, 2011 9:01 am

Scorpion

These are some definitions of desperate:

reckless or dangerous because of despair or urgency

leaving little or no hope; very serious or dangerous

I am neither, you may have felt this way but you are in no position to speak for me.

I made no statement about the differing opinions except that both sides had people who have issues with it. The implication I get from your comment is that my opinion is wrong or doesn't count. Is this what you are trying to say?

"As soon s I post anything stating this forum is not a good place for differing opinions sure enough there is always someone waiting in the wings to confirm they are not desperate, uniformed, etc."
- Sorry, I don't know how to do the little boxes.

My diagnosis was made in 2005 with my own awareness of the possibility of it being MS back in 2003. This is after having obvious symptoms for 8 or so years. My desperation was just getting diagnosed. There has been many years and loss of function that I have adjusted to, not happily and with little help or support from neuro's.

You forget that this is the best time to have MS. There is so much research going on that a cure is just around the corner, so there is no reason to be desperate.

Kim
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Postby Lyon » Sun Jun 26, 2011 9:01 am

munchkin wrote:Lyon Your statement
Lyon: "You have to wonder how many people selling Fords are REALLY going to find in their research that Chevy''''s are better and then publish that finding? Like the people who run the pharmas, treating IR''''s need to put food on the table at the end of the day.
munchkin: Are you saying that you agree that the pharmas are just as likely to look at their own self-interests before that of the recipients of their drugs?
Very astute! When I was writing that I wondered and hoped that no one would raise this issue.

I was playing the devil's advocate when using that example and my impressions of the people at the pharmas remain the same.....they of course are in the business of making a profit but that they also have friends and family who are or are going to be sick someday and are going to have to to live with their conscience like everyone else. Of course there are good and bad examples in any industry.

I'm not sure that's the answer you were looking for. Would it surprise me to hear on the news that a pharma CEO got caught doing something dastardly? No. Would it surprise me to read about a pharma CEO donating time and money to charity? No. While I don't like what they do I don't find the pharmas are any better or any worse than any other industry now days.
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Postby munchkin » Sun Jun 26, 2011 9:16 am

Lyon

I'm glad you replied.

Thank you for being true. It's really sad that this is how our system seems to be working. I don't know that I was really looking for an answer, maybe it was meant as more of a thought provoking comment.

Most people have their ideas about all of the MS issues but if there is no thought to the issues (I think Cheerleader said we need to see the trees in the forest) nothing will move forward.

Kim
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Postby Liberation » Sun Jun 26, 2011 9:18 am

Cece wrote:
Liberation wrote:Hi guys,
I have not been around for a long time, so I was just wondering if there is any new development in connection to CCSVI. ...As far as I can see from the posts I read the same old debate is still going on... :)

Data from a study that was presented by its authors as reducing the case for CCSVI was re-examined by another researcher to positively make the case for CCSVI and for CCSVI being causal for MS.

www.thisisms.com/ftopict-17014.html


Thanks, Cece. Any results from patients treated with dr Sclafani's ivus technique? How are you after the operation? It has been a few months you went through it.
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Postby Lyon » Sun Jun 26, 2011 9:27 am

munchkin wrote: I don't know that I was really looking for an answer, maybe it was meant as more of a thought provoking comment.

:lol: I can hardly blame you for that. I've got a bit of a reputation myself!
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Postby munchkin » Sun Jun 26, 2011 9:54 am

and quite a reputation at that. :)
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Postby Cece » Sun Jun 26, 2011 2:44 pm

Liberation wrote:Thanks, Cece. Any results from patients treated with dr Sclafani's ivus technique? How are you after the operation? It has been a few months you went through it.

Since he started measuring the veins through IVUS, he has not had any occlusions in patients who are compliant with the anticoagulant prescription and one occlusion in a patient who could not be compliant with it because of an allergic reaction. So this may be a step forward in not having the occlusions that we started hearing about last summer and fall.

I am doing well! I still have MS and ups and downs. But I had immediate improvements (colors, vision to the extent of needing a new prescription, reduced but not eliminated fatigue, much better cogfog, and others) and gradual improvements. About a month ago, so three months post-procedure, I discovered that I can tolerate heat so much better now. We turn on the air conditioning now when my husband is hot, not because I am. Air conditioning has been a huge need for me over the last ten years so this is very different. Another unexpected change has been that my minimal residual foot drop on my right foot is completely gone. It had been constant for over five years. There was an improvement in this right after the procedure but it was about a month ago that it healed completely.

I am however scheduled for a follow-up venogram with ivus in two weeks with Dr. Sclafani. He never checked my azygous with ivus, but he has found that he is sometimes finding issues on ivus that aren't showing up on the venogram. I'd already made travel arrangements to be out there for the symposium, so that is how that ended up getting planned.
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Postby HarryZ » Mon Jun 27, 2011 7:22 am

questor wrote:No disrespect to anyone, but I find it pretty interesting that after 2-1/2 years of the big announcement of Dr. Zamboni's discovery, there is still such disagreement across the board about the importance and significance of CCSVI with respect to MS. There is still no compelling evidence that is strong enough to fully make the case.

Given the objective nature of science, this shouldn't be hard to do (convincing everyone, I mean) once the evidence is truly there.


Read the history of Copaxone (one of the "approved" MS DMDs) and you'll see that 2 1/2 years in science means little in the scheme of things. This drug was originally found to not have statistically significant trial numbers for FDA approval, had the data massaged to the nth degree and finally got its approval. Some researchers have stated that Copaxone is all but useless in the treatment of MS yet its still available, drawing in millions of dollars a year for Teva.

Of course CCVSI is not yet an approved treatment for MS. That process takes a number of years. The trial process has really just begun and there is an army of MS docs who have done a lot to try and deter the procedure.

Will it be successful down the line? Who knows, but anecdotal evidence has shown that it has helped some MS patients. Being told that Copaxone is all but useless didn't deter Teva. Let's hope that CCSVI is given a chance.

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Postby 1eye » Mon Jun 27, 2011 8:28 am

No disrespect to anyone, but I find it pretty interesting that after 2-1/2 years of the big announcement of Dr. Zamboni's discovery, there is still such disagreement across the board about the importance and significance of CCSVI with respect to MS. There is still no compelling evidence that is strong enough to fully make the case.

Given the objective nature of science, this shouldn't be hard to do (convincing everyone, I mean) once the evidence is truly there.


I find it pretty amazing that anyone believes they are fully convincing (to anyone, let alone everyone) with their so called arguments against something which is not only as obvious as the nose on their face but is so close now to the way it is going to appear in textbooks hundreds of years from now, long after they are forgotten floobydust in rusty hard drives which have not rotated in generations.
"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 Lyon » Mon Jun 27, 2011 12:40 pm

1eye wrote:I find it pretty amazing that anyone believes they are fully convincing (to anyone, let alone everyone) with their so called arguments against something which is not only as obvious as the nose on their face but is so close now to the way it is going to appear in textbooks hundreds of years from now, long after they are forgotten floobydust in rusty hard drives which have not rotated in generations.

Going only by what is
1eye wrote:as obvious as the nose on their face
is exactly how arsenic and other "common sense treatments" became MS treatments of choice prior to controlled studies.
1eye wrote: is so close now to the way it is going to appear in textbooks hundreds of years from now, long after they are forgotten floobydust in rusty hard drives which have not rotated in generations.
cripes! I don't think any of us had realized that you had the power to so accurately foretell the future. And to think that we've wasted so much time discussing the need for controlled clinical trials! :oops:
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Postby jimmylegs » Mon Jun 27, 2011 1:17 pm

yawn

"If you disagree with someone, please succintly state why and let it go at that. Point, counterpoint, counter-counter point, etc. is not useful-- the reality is that after the first disagreement, you will rarely convince another of something they feel strongly about unless you have shocking new information to share. The drawn-out debates also turn people off from reading the messages in the first place."
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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