Results from Frankfurt-first 100 patients

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

Results from Frankfurt-first 100 patients

Postby cheerleader » Fri Jun 24, 2011 9:39 am

To explore CCSVI scientifically and provide professional medical care the CCSVI-Center in Frankfurt has assembled a team of Neurologists, diagnostic and interventional Radiologists and Cardiologists for the diagnostic work-up and treatment of patients with CCSVI.

Over the past 12 months we have successfully treated well over 100 patients, without complications.

We have also established international collaborations with research institutions also interested in CCSVI, most notably Prof. Zamboni himself and Profs. Kim and Kabutei from Boston University School of Medicine in the US and are in correspondence with other researchers such as Prof. Haacke.

A preliminary publication of our experience with CCSVI appeared at the RSNA (Radiological Society of North America) meeting in Chicago 2010. We are currently evaluating our data of more than 100 patients for publication and are in the process of setting up a randomized trial of endovascular treatment of CCSVI.

Scientific Evidence versus Ethical Obligation:

CCSVI is an unproven theory and much criticised by Neurologist world-wide. “It is very dangerous and all placebo” the Neurologists say.

We do not agree: As for safety, we have not seen and dangerous complications. But: any kind of medical treatment will cause side effects to some extent, even pharmacotherapy of MS. And for placebo: Well, we do not know for sure until the results from well designed randomised trials are available. But placebo effects usually do not occur in almost all treated patients. And they do not last for as long as a whole year.

In synopsis of the overall safety record of CCSVI treatment and our own experience with patients, particularly in view of the impressive improvements treated patients have experienced, we consider it unethical to withhold this treatment from those patients who are aware of and willing to accept its experimental nature.


60% of patients experienced strong symptom relief, 33% moderate, 7% none...more info on site:

http://www.ccsvi-center.com/
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5042
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Advertisement

Postby scorpion » Fri Jun 24, 2011 10:17 am

They really want us to believe 90% of people experienced an improvement in motor/sensory issues?????? There was another trial posted today from amends and only 56% of people reported improvements in mobilty issues.

Well, we do not know for sure until the results from well designed randomised trials are available. But placebo effects usually do not occur in almost all treated patients. And they do not last for as long as a whole year.


false: http://www.mindpowernews.com/PowerOfPlacebo.htm
-
These findings suggest that the medical ritual of a device can deliver an enhanced placebo effect beyond that of a placebo pill.


5. Placebo Effect Can Last For Years[/b]
The brain’s power to make people feel better can last for years.

The 2-year study, conducted at 28 centers in Canada, involved 613 patients who were given either the drug Proscar (finasteride) or a placebo. Doctors found that the 303 men on the placebo pills really were doing better, even though their prostates had grown, on average, by 8.4%. Although an enlarged prostate can impede urine flow, urine flow was improved for the men taking the placebo. Some participants, continuing to do very well on placebo, didn’t want to stop taking the pills.

The placebo effect can last for a long time if the three necessary elements are maintained:

* beliefs and expectations of patients
* beliefs and expectations of doctors
* a good relationship between them


And this-
CCSVI is an unproven theory and much criticised by Neurologist world-wide. “It is very dangerous and all placebo” the Neurologists say.


I really hope this comment was messed up due to translation because it is rather bizarre.
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby MrSuccess » Fri Jun 24, 2011 12:34 pm

it must be good if scorpion is " all over it " .... within minutes of posting .

... a ringing endorsement if there ever was one ........ :wink:




Mr. Success
User avatar
MrSuccess
Family Elder
 
Posts: 890
Joined: Fri Sep 18, 2009 3:00 pm

Postby questor » Fri Jun 24, 2011 1:24 pm

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.

Once it is, we'll all be on the same side, including Scorpion and Mr. Success.

Until then, all we can do is theorize, argue, nit-pick, develop conspiracy theories, and disagree.

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone
Former Ampyra User
Regular Botox Bladder Injections
User avatar
questor
Family Elder
 
Posts: 280
Joined: Mon May 22, 2006 3:00 pm
Location: Northern Calif Monterey Bay Area

Postby ozarkcanoer » Fri Jun 24, 2011 1:38 pm

Questor... You hit the nail on the head. It will really take years for CCSVI to be studied. I know that all I can do right now is to absorb what is being said and help with the research in a very small way :) Human beings are notorious at predicting the future. Little did I know last year that this year I would be sitting here with two occluded stents in left and right IJVs. Whatever the outcome it is an interesting ride....

ozarkcanoer
User avatar
ozarkcanoer
Family Elder
 
Posts: 1273
Joined: Thu Oct 15, 2009 3:00 pm
Location: St. Louis, Missouri

Postby MrSuccess » Fri Jun 24, 2011 2:06 pm

may I suggest you read Aesops tale of The fox and the grapes

It's unfortunately an regular theme here on TIMS.


Mr. Success
User avatar
MrSuccess
Family Elder
 
Posts: 890
Joined: Fri Sep 18, 2009 3:00 pm

Postby fernando » Fri Jun 24, 2011 2:06 pm

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.

--Tracy


2 and a half years is nothing in "Science time"
User avatar
fernando
Family Elder
 
Posts: 228
Joined: Wed Jul 15, 2009 3:00 pm
Location: Argentina

Postby fernando » Fri Jun 24, 2011 2:08 pm

scorpion wrote:They really want us to believe 90% of people experienced an improvement in motor/sensory issues?????? There was another trial posted today from amends and only 56% of people reported improvements in mobilty issues.


Well, there is people who disagree with the so called placebo effect.

Authors' conclusions
We did not find that placebo interventions have important clinical effects in general. However, in certain settings placebo interventions can influence patient-reported outcomes, especially pain and nausea, though it is difficult to distinguish patient-reported effects of placebo from biased reporting. The effect on pain varied, even among trials with low risk of bias, from negligible to clinically important. Variations in the effect of placebo were partly explained by variations in how trials were conducted and how patients were informed.
http://onlinelibrary.wiley.com/o/cochrane/clsysrev/articles/CD003974/frame.html
User avatar
fernando
Family Elder
 
Posts: 228
Joined: Wed Jul 15, 2009 3:00 pm
Location: Argentina

Postby Thekla » Fri Jun 24, 2011 3:18 pm

I wrote them with a few questions--just got an answer today.

They also do Doppler Ultrasound and Prof Stehling was in Italy with the Zamboni to learn the protocol.

They do not use IVUS.

I am not going there to be treated although it is good to know they are there for follow up Doppler since I live in Frankfurt. Treatment is not covered by insurance here.
User avatar
Thekla
Family Elder
 
Posts: 144
Joined: Sun Jul 04, 2010 3:00 pm
Location: Germany

Postby MrSuccess » Fri Jun 24, 2011 4:16 pm

in reality .... to understand CCSVI and it's suggested link to MS .... it is necessary to follow the story with relentless determination ..... as so much happens .... so quickly . Many important developments have gotten past my vigilant eyes . Fortunatley , our Cece has been there to rescue me from ignorance . :?

I can't express how pleased I am to be considered to hold opposite opinions ... as posted by scorpion . I am a glass-is-half -full person.

But most of all ..... let us all relish the positive results of those fortunate enough to have obtained and benefitted from CCSVI treatment.

And not act as the fox ........



Mr. Success
User avatar
MrSuccess
Family Elder
 
Posts: 890
Joined: Fri Sep 18, 2009 3:00 pm

Postby scorpion » Fri Jun 24, 2011 5:19 pm

MrSuccess wrote:in reality .... to understand CCSVI and it's suggested link to MS .... it is necessary to follow the story with relentless determination ..... as so much happens .... so quickly . Many important developments have gotten past my vigilant eyes . Fortunatley , our Cece has been there to rescue me from ignorance . :?

I can't express how pleased I am to be considered to hold opposite opinions ... as posted by scorpion . I am a glass-is-half -full person.

But most of all ..... let us all relish the positive results of those fortunate enough to have obtained and benefitted from CCSVI treatment.

And not act as the fox ........



Mr. Success



The only thing that is relentless is the eloquent posts on here that, for whatever reason, try to convince people that angioplasty is a legitimate treatment for MS. Mr. Success give me something to fill my glass at least half full with and I will certainly imbibe but please if my drink contains what this forum has been pouring for the last two years I would rather go thirsty.
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby MrSuccess » Fri Jun 24, 2011 5:50 pm

Scorpion - you might take comfort in the words of Dr. Synder.

I hope that helps.




Mr. Success
User avatar
MrSuccess
Family Elder
 
Posts: 890
Joined: Fri Sep 18, 2009 3:00 pm

Postby cheerleader » Fri Jun 24, 2011 6:36 pm

I posted a report from a reputable CCSVI testing and treating facility in Frankfurt, Germany, which is finding similar results to that of Dr. Zamboni.

We have many international members, like Thekla, and for those that are interested in testing, follow-up or treatment for CCSVI, here's the news from Frankfurt. For those who are not interested, there are 20 other forums to visit on TIMS.
have a great weekend, and happy summer!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
User avatar
cheerleader
Family Elder
 
Posts: 5042
Joined: Mon Sep 10, 2007 3:00 pm
Location: southern California

Postby scorpion » Fri Jun 24, 2011 7:03 pm

cheerleader wrote:I posted a report from a reputable CCSVI testing and treating facility in Frankfurt, Germany, which is finding similar results to that of Dr. Zamboni.

We have many international members, like Thekla, and for those that are interested in testing, follow-up or treatment for CCSVI, here's the news from Frankfurt. For those who are not interested, there are 20 other forums to visit on TIMS.
have a great weekend, and happy summer!
cheer


And THAT to you is what makes it reputable.
User avatar
scorpion
Family Elder
 
Posts: 1323
Joined: Wed Nov 05, 2008 4:00 pm

Postby Lyon » Fri Jun 24, 2011 7:16 pm

cheerleader wrote: For those who are not interested, there are 20 other forums to visit on TIMS.
have a great weekend, and happy summer!

Oh I'm interested, just not in a "swallowed it hook, line and sinker" sort of way.

You have a nice summer too cheer. Maybe we'll hear from you again in the fall.
Lyon
Family Elder
 
Posts: 6063
Joined: Wed May 03, 2006 3:00 pm

Next

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service