This Is MS Multiple Sclerosis Community: Knowledge & Support

Yeah, saw that this am too, scorpion. Put it up on the FB wall with some points of contention--

--Dr. Marian Simka's study, presented at ECTRIMS 2010, showed that CCSVI was present in various stages of MS, and had no relationship to age of patient of length of disease:
Summary: This study of 331 MS patients was conducted with internal catheter venography, and found that more disabled patients suffered from bilateral/and or severe stenosis of the internal jugular veins. Those with the most aggressive and progressive clinical course of MS had azygos involvement . There was no correlation found between age of patient, duration of MS and severity of venous lesions. This points to the probable congenital nature of these malformations.

--Why does the CMQ reference ONE paper from the AUB which only tested a handful of people w/ CCSVI, when Dr. Simka has tested over 300 patients and compiled more substantial evidence??? Here is Dr. Simka's abstract -
link to abstract

--"Insufficiency of scientific data?" There were nine new papers on the reality CCSVI presented at the recent ECTRIMS conference, added to the growing list of dozens of papers on this condition. The gold standard test that ALL agree on around the world is the catheter venography. Why is the CMQ not allowing for this test?

--Dr. Dumas, NO ONE, including Dr. Zamboni, has called angioplasty to relieve CCSVI a "miracle cure." This phrase is only used by those seeking to denigrate Dr. Zamboni's discovery. Blockage of the central veins is a medical problem.

cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

This doesn't say miracle, but it does say cure.

http://www.euromedicpoland.com/index.php?setlang=eng

My wife didn't get diagnosed with MS until September 2010 (officially) ... first symptoms in late 2009.

She was treated for CCSVI (tested, found, treated) in June 2010.

I guess she's a rare case where her CCSVI came well BEFORE the progression of her disease.

She didn't tell her neurologist at the time of her (official) diagnosis she had CCSVI liberation ... she asked him about it, his response was humorous and uneducated to say the least, and then he noted her marked improvement in some areas since her first visit with him ... (we laughed because they were the things that went away RIGHT AFTER liberation).


That's a FACT.


Anyone who took enough statistics at a high level knows that you can manipulate data to show anything you want (especially when you're looking for it - hello Al Gore and global warming).

These studies referenced by the group in Montreal ... well ... easy to see where they might do that - considering their past "positions" on CCSVI.

The English EuroMedic splash page does say "taking care for your cure," and I wish it didn't. To me, "taking care for your cure" sounds a like a phrase a non-native English speaker might create - I wondered if it might be a Polish speaker's rendition of something like "taking care for your treatment" - perhaps influenced by the similar sounds of "care" and "cure" so that it was almost like a play on words.

So I went to the Polish version of the site where it reads instead, "Dbamy o Twoje leczenie". I ran that through an online translator and came up with "we care about your treatment"...

In his presentations, Dr. Simka is very clear about it not being a cure; when I was discussing treatment at the EuroMedic, no words like cure were spoken, and in the EuroMedic FAQ page, it says:



Again, I wish it didn't say "taking care for your cure" on the splash page, but a bad translation of "we care about your treatment" isn't quite the same as a medical pronouncement that CCSVI cures MS.

-d

_________________
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread

Please correct me if I am off base with this statement but it seems to me that outside Zamboni's inner circle of companions, no one has been able to come close to validating his hypothesis. I remember reading that Dr. Simka has been collabarating with Zamboni since 2006 so I am not sure I would consider his results "independent". I would like to see a group of people outside that inner circle verify some of his claims.

But you're focused on diagnostics, using doppler ultrasound in a different way than as taught and used by vascular surgeons throughout their careers, which Dr. Sclafani answered to last night ... the rest of us are focused on being in the veins - and what happens once treated.

If a vein is messed up fix it, who cares how you find it.

You don't give someone an x-ray when their bone is sticking through the skin of their arm, because you know it's broken.

If several doctors (Sclafani, Siskin, Zamboni, Sinan) are finding at least 9 out of 10 people as having vein issues in very few main veins - while having "MS" ... then there's a high likelyhood that's the case. Go in and fix the veins, don't focus on an unproven diagnostic test.

We'll develop the testing and measurements, maybe it's ultrasound, maybe it's MRV ... maybe it's something new not even out there yet ... but for now, fix veins that drain the brain, spine and other critical areas ...

Zamboni's research isn't just about the diagnostics ... the reason his theory is taking hold is because once the condition of CCSVI is treated, that's when something happens.

Cece knowing she has CCSVI (as she does right now) ... isn't helping any of her symptoms. When she's treated, then it may help those symptoms.


AND to your point about his "inner circle" ... this is so new, what else is there but the inner circle? Who else even knows about this aside from Neurologists (from MS patients bugging them) and IRs and vascular surgeons (from MS patients bugging them). Once it hits some journals, and spreads, then we can talk ...

EDIT - like I said, my wife has two uncles who are doctors (one a cardiologist) the other a radiologist - neither of them heard of CCSVI until after we went to where her procedure was, had it done, gave them the images, gave them the research, gave them some contacts ... and their response was "wow", "this is going to be huge" ...

That's a true story.

Marc Girard is the real conflict of interest here advising the new college president. He is a huge ccsvi opponent .
He falls into this category of "reliable authorities" with obvious conflicts of interest.
http://ccsviclinic.ca/?p=692

Thanks concerned for the link,

I'll contact the euromedic team to kindly ask them to remove the phrase "taking care for your cure". It is misleading.

By the way browsing in the link you provided I noticed that Dr Simka became a professor of vascular surgery. Well done to him.
http://www.euromedicpoland.com/5,news.html
Rox

_________________
Diagnosed with Transverse Myelitis in December 2008. Inflammatory demyelination of the spinal cord (c3-c5). No MS, but still CCSVI.

What about Al-Omari in Jordan? (84% of MS patients with CCSVI; 24% of controls?)

http://www.ncbi.nlm.nih.gov/pubmed/20351667

Is Al-Omari also part of this mysterious inner circle of Zamboni companions (who live and work around the world)? If so, how big would you say that "inner circle" is? How do you get to join?

-d

_________________
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread

Not true. I met Dr. Simka in Bologna in Sept. 2009, and he and I met Dr. Zamboni at the exact same time, for the first time. Dr. Simka was following his research since 2008- like many of us on TIMS- but did not start studying the connection in earnest until late 2009-early 2010.
cheer

_________________
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

Dunkempt thanks for providing one other name. That was all I was asking. Please refer to my original post where I never referred to Zamboni's inner circle as mysterious. No need to fire everyone up by throwing in some extra words. I just keep reading about the same names over and over and many of them seemed to have worked closely with Zamboni prior to the his CCSVI hypothesis. I was saying, for me ,that it will be important for scientists not in that circle to verify Zamboni's CCSVI hypothesis.

You're right, I shouldn't have put in "mysterious" before your "inner circle of companions". (I just deleted another post where I was obnoxious too. Old habits die hard.)

But you said that you "would like to see a group of people outside that inner circle verify some of his claims," and (above) that for you that would be important; and now that's two names and studies - Simka and Al-Omari - who qualify.

Does that change how everything looks for you?

-d

_________________
dx rrms august 2009 (dx CFS spring 1988) off avonex after 3 months
treated katowice 24-25 march 2010 - best thing that ever happened - check tracking thread

http://ccsviworldwidevictory.com/DrSimka.aspx

Another post:


Posted by: Warrior4ms

April 15, 2010 at 7:29 AM
Although most pwMS and the people that love them welcome any reporting of significant events in the promotion of the CCSVI theory, we would appreciate that this coverage be without inaccuracies and prejudice. I particularly resent the term 'popped up' in relation to the clinic in Poland where Dr Simka practices. He started this treatment at about the same time as Stanford did and has probably got more experience and works more closely to Dr Zamboni's process than any other 'study' currently in operation. He is also highly qualified and experienced in this area having worked in collaboration with Dr Zamboni since 2006.Although Dr Zamboni is against the use of stents because of the unknow longterm side effects and the undersirability of having a foreign body in veins, only one stent has migrated so far, so more accurately you could have said 'because of the possibility that a stent might migrate', possibly some 400 patients have been fitted with stents and so far there has only been one incident of migration...


http://for-greet.squarespace.com/journa ... anada.html
from the article:
1.Dr. Simka, together with Prof. Paulo Zamboni, have been at the forefront of CCSVI. They first met in 2006 in London where Prof. Zamboni presented a paper on the link between MS and leg ulcers. From that time on, Dr. Simka took a keen interest in that area.

Was Simka pulling your leg or are all these articles bogus?

Scorpion,

Nobody can answer such a question - as if you don't know that already.

Cheer has stated that she and Simka met Zamboni for the first time in 2009 and that's all. She can't know if your own sources are legit or not.