Results from Frankfurt-first 100 patients

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

Postby 1eye » Sat Jun 25, 2011 12:00 pm

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


How about in a "Bouncing Betty" kind of way?

You have a nice summer too cheer. Maybe we'll hear from you again in the fall.
if we're very lucky... In extreme fortune, even sooner!
"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 Cece » Sat Jun 25, 2011 2:50 pm

Everyone posting in this thread is a member of TIMS and deserves respect and has a responsibility to treat others with respect, imo....
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.

We were just talking in Dr. Sclafani's thread about the differences between angioplasty as a treatment for MS and angioplasty as a treatment for CCSVI.

The two may go together, like Lyon and sarcasm, but they are not the same; one is a condition of vascular abnormalities in the jugulars and the azygous, the other a condition of immune reactivity and damage in the CNS.

Angioplasty is indeed a legitimate treatment for vascular abnormalities.
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Postby Lyon » Sat Jun 25, 2011 3:14 pm

While with time and further evidence angioplasty might prove to be legitimate treatment for for ccsvi-MS, following definition only those enthralled with it would consider it "legitimate treatment" before ccsvi has been proven to be an ailment.

Cece wrote: Angioplasty is indeed a legitimate treatment for vascular abnormalities.

Definition of LEGITIMATE:
1. a : lawfully begotten; specifically : born in wedlock b : having full filial rights and obligations by birth <a legitimate child>
2 : being exactly as purposed : neither spurious nor false <a legitimate grievance> <a legitimate practitioner>
3a : accordant with law or with established legal forms and requirements <a legitimate government> b : ruling by or based on the strict principle of hereditary right <a legitimate king>
4: conforming to recognized principles or accepted rules and standards <a legitimate advertising expenditure> <a legitimate inference>
5: relating to plays acted by professional actors but not including revues, burlesque, or some forms of musical comedy <the legitimate theater>
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Postby Cece » Sat Jun 25, 2011 3:50 pm

When valves elsewhere in the body's blood vessels are malformed, they are treated.

When the jugulars are blocked for other reasons, such as dialysis-related catheter complications, they are treated.

There is research yet to be done on CCSVI but the fundamentals are in place.
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Postby Lyon » Sat Jun 25, 2011 4:30 pm

REALLY, just how believable SHOULD the medical world find the ccsvi "science" when it continually comes from people who are geared to profiting from people who (understandably) would like to be rid of MS?

This is yet another serving of the salesman doing their best to convince those they can that their product is the correct choice.

Buffalo wasn't set up to profit from it but they also didn't say what people wanted to hear which lowered them to bad guy status.

http://www.ccsvi-center.com/
a reputable CCSVI testing and treating facility in Frankfurt, Germany, wrote: we consider it unethical to withhold this treatment from those patients who are aware of and willing to accept its experimental nature.
Gosh, who would have expected that!$$
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Postby MrSuccess » Sat Jun 25, 2011 5:57 pm

jugular - see my last post :wink:

It always seems appropriate .... after a Bob Lyon post :lol:



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Postby Lyon » Sat Jun 25, 2011 6:24 pm

Perfect example of the world of ccsvi. I'm the "bad guy" yet your best "arguments" are line drawings of butt holes and anus definitions.

You two will do wonders in convincing the world that ccsvi believers aren't a bunch of nuts.
MrSuccess wrote:jugular - see my last post :wink:

It always seems appropriate .... after a Bob Lyon post :lol:



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Postby scorpion » Sat Jun 25, 2011 7:06 pm

Ok from now on, so as not to upset the CCSVI faithful, any inaccuracies found in a trial/study perceived as positive by the constant posters on this forum will not be pointed out. I see such a travesty leads to grown men posting representations of anus's while it traumatizes others to the point of taking a leave of absence due to being the victim(or at least acting like one) from such malicious attacks. However it is completely acceptable to point out that any study not finding the results the faithful hope for is run by a bunch of no good lousy researchers with obvious ties to big pharma who have made it their life mission to eradicate any vestige of Zamboni's hypothesis!!!!!!!!!!!!!! For those who are interested in finding a balanced discussion on CCSVI don't come here, there are 20 other forums to visit on TIMS. Mr. Success, you may now get back to posting your representations of anus's.
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Postby Lyon » Sat Jun 25, 2011 7:24 pm

scorpion wrote:Ok from now on, so as not to upset the CCSVI faithful, any inaccuracies found in a trial/study perceived as positive by the constant posters on this forum will not be pointed out. However it is completely acceptable to point out that any study not finding the results the faithful hope for is run by a bunch of no good lousy researchers with obvious ties to big pharma who have made it their life mission to eradicate any vestige of Zamboni's hypothesis!!!!!!!!!!!!!!

I'm only here to make friends so I have to agree with what you're saying!
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Postby cheerleader » Sat Jun 25, 2011 8:10 pm

Never said I was leaving...just commenting on the lovely weather we've been having in LA, and wishing all happy summers and great weekends.

To get back on topic and give more info on this center.

Here is the head of the Frankfurt CCSVI center---he is a well-known and esteemed interventional radiologist

link
Dr. Michael K. Stehling is Adjunct Professor at the Ludwig-Maximilians University (LMU) in Munich and Associate Professor of Radiology at Boston University in Massachusetts, USA.

After completing his studies in Human Sciences and Medical Physics at the University of Manchester, England and the Johann-Wolfgang-Goethe University in Frankfurt, Germany Dr. Stehling served as Research Assistant to Sir Peter Mansfield, Prof of Physics and Nobel Prize winner in Medicine in 2003 (for discoveries concerning magnetic resonance imaging) and thereafter completed doctorate work in echo-planar imaging.

He completed his radiology training at the University Hospital in Zurich, Switzerland and was later Resident and Clinical Fellow in Radiology at the Beth Israel Hospital at Harvard Medical School in Boston, MA, USA.


Here is one of his publications from pub med....it might further explain his understanding of CCSVI and its affects on the central nervous system.

Echo-planar MR imaging of human brain oxygenation changes
Michael K. Stehling MD, PhD1,
Echo-planar magnetic resonance (MR) imaging was used to observe signal intensity changes in the human brain during hypoxia. Increasing arterial blood levels of deoxyhemoglobin (0%–42%) during prolonged apnea were monitored with a pulse oximeter and correlated with gray matter and white matter signal attenuation of 13% and 20%, respectively. The results suggest the possibility of using deoxyhemoglobin boluses as a physiologic, intravascular susceptibility contrast agent for assessment of local cerebral oxygen utilization.


I didn't post this original link to create further debate, I did so to let readers of this forum know about another center which is publishing its research later this year.
calm down, guys...really.
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby MrSuccess » Sat Jun 25, 2011 8:39 pm

all - scientific - discoveries and published results should be posted freely, here on TIMS .......

Great post on the German CCSVI treatment results . And Dr. Synder's post is so encouraging .

Good work , people.

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Postby munchkin » Sun Jun 26, 2011 4:15 am

Venoplasty and Stenting By Haraldur Bjarnason discusses venous stenting for svc syndrome and this is totally acceptable.

Haraldur Bjarnason is listed as the director of vascular surgery at the Mayo clinic and the paper is an outline on the how to test and treat. There is a list of symptoms and there are a number of cross over symptoms that have been relieved for people with MS by having their jugular veins unblocked. This warrants treatment for blocked jugulars.

Dr.Zamboni never said this was a cure for MS.
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Postby Lyon » Sun Jun 26, 2011 6:12 am

cheerleader wrote: I didn't post this original link to create further debate, I did so to let readers of this forum know about another center which is publishing its research later this year.
calm down, guys...really.
cheer

I'm calm. The point remains the same, that the ccsvi "science" is being done at primarily treatment centers who profit from treating.

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.

In this case the "researchers" admit that they haven't accounted for placebo and then pretty much give us their opinion that placebo couldn't account for the results they've found.
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Postby scorpion » Sun Jun 26, 2011 7:27 am

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 in the meantime 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.
Last edited by scorpion on Sun Jun 26, 2011 7:54 am, edited 1 time in total.
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Postby munchkin » Sun Jun 26, 2011 7:54 am

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.
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