Dutch Study on CCSVI

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

Postby Inge67 » Tue Apr 06, 2010 5:47 pm

Hi.
I do not know either. The only thing I know for sure here in this particular study they only used Mri techniques.
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Thank you

Postby MarkW » Wed Apr 07, 2010 7:15 am

A big thank you to JohnAm, Asher, Inge67 etc for the info on the Dutch study. I am discussing CCSVI with my local MS team (which is a significant group). Below is an extract from a draft letter so you can see how I used the data supplied. If there are any mistakes in my draft please let me know.
Thanks and regards,
MarkW
===================================
I am curious to understand why the MS Neurology team is placing such an emphasis on the 'Dutch Study'. The Amsterdam VU Medical Centre website says that only 20 patients and controls are participating in the study. I understand from Dutch colleagues that the study has enrolled new MS patients and is likely to report at the end of April or in May. The study is using Magnetic Resonance Venography rather than the gold standard for diagnosis of CCSVI, which is Selective Venography (SV) described by Hojnacki D et al. I suggest that the small size of the study and diagnosis method will leave the Dutch study open to criticism, whatever its findings may be.

My personal analysis of CCSVI leads me to await the Buffalo Neuroimaging Analysis Center (BNAC) study results. The press release indicate the large size of the study in Buffalo, New York, USA
http://www.buffalo.edu/news/fast-execut ... =109370009
I understand that preliminary results from BNAC will be announced at the Annual Meeting of the American Academy of Neurology being held in Toronto Canada in April.

I would be very surprised if Oxford University/Oxford Hospitals are not able to offer Colour Doppler Sonography and Selective Venography to private patients in the coming months. Indeed I would find it unethical if anyone with MS was not permitted to have the test described by Menegatti E et al as a private patient in the UK.

Once a diagnosis of CCSVI is known, I would be intrigued if any vascular specialist would recommend to not treat the symptom. Instead insisting that a complete understanding of the reasons for CCSVI be known before the symptom could be treated. Having consulted to the pharmaceutical industry I am very aware of the hurdles which need jumping before such diagnosis and therapy would be offered under the NHS. However, if only a few percent of pwMS could afford private medicine that would represent thousands of Britons.

Ref 1 - Hojnacki D, Zamboni P, Lopez-Soriano A, Galleotti R, Menegatti E,
Weinstock-Guttman B, Schirda C, Magnano C, Malagoni AM, Kennedy C, Bartolomei I, Salvi F, and Zivadinov R: Use of neck magnetic resonance venography, Doppler sonography and selective venography for diagnosis of chronic cerebrospinal venous insufficiency: a pilot study in multiple sclerosis patients and healthy controls.
Int Angiol. 2010 Apr;29(2):127-39. PMID 20351669

Ref 2 - Menegatti E, Genova V, Tessari M, Malagoni AM, Bartolomei I, Zuolo M, Galeotti R, Salvi F, and Zamboni P: The reproducibility of colour Doppler in chronic cerebrospinal venous insufficiency associated with multiple sclerosis.
Int Angiol. 2010 Apr;29(2):121-6. PMID 20351668

===============================================
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Inge67 » Wed Apr 07, 2010 7:55 am

Good Job Mark.

Just to make sure: it was 20 patients and 20 healthy controls. 40 in total.
Your scentence can be easily misread I think.

splitting hairs...but nonetheless.
:D
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Postby Asher » Wed Apr 07, 2010 7:58 am

Well done Mark, good luck and please don't throw a stone across the channel :D
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Duch TV (with subtitles)

Postby joge » Sat Jun 19, 2010 6:56 am

June 16 2010 Dutch TV had an item about CCSVI and the Amsterdam research by het VUMC.

http://www.youtube.com/watch?v=35Syz7tiloA

A lot of discussian is going on in The Netherlands about the quality of the research.

-the Zamboni method was not used
-controlgroup were all family members of MS patients.
-only 20 people were tested
-nobody was treated, so treatmentresults were not available.

The same day, a Begium MD wrote an open letter to the VU-team, questioning the statistical power and the method of their research. Dr. Beelen MD, checked 107 patients with MS and discovered ccsvi in about 90% of the cases. He alse did treatment, including some stents. No complications. Publication will follow later.
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Still Arguing in Oxford

Postby MarkW » Sat Jun 19, 2010 7:27 am

Thanks for posting the youtube link. Is it possible to post a translation of Dr. Beelen MD letter ? Great news that he checked 107 patients with MS and discovered ccsvi in about 90% of the cases. He alse did treatment.
I am still arguing with the medics of Oxford. Below is an extract from a letter I have just sent to the Medical Director of the Oxford Hospitals, copying Neuros and IR Consultants.

I am aware of a Dutch media report concerning the Amsterdam VU Medical Centre study. Their website said that only 20 patients and 20 healthy controls were participating. The study used Magnetic Resonance Venography rather than the gold standard for diagnosis of CCSVI, which is Selective Venography (SV) as described by Hojnacki D et al. (In the csvi library for TIMSers). The small size of the study and diagnosis method, mean the Dutch work is worthless. For me, it is like saying: “we looked for a needle in the haystack by visual means but did not use a metal detector. Our conclusion is that there is no needle in the haystack.”

Attack is the best form of defence.................Lets attack this paper as soon as it is published. I hope our Dutch colleagues can reply to the newspaper article.

Good luck,
MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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translation letter dr. Beelen MD

Postby joge » Sat Jun 19, 2010 12:03 pm

----translation (amateur, but close to the original--------


To: VUmedical centre, Amsterdam


Dear,

Through a journalist my attention was just drawn to a report in a Dutch current affairs program on CCSVI.

In this report, there are quite a few disturbing elements.

1. They conclude from a very limited group of 20 people that there is no causal link. I wonder, what's the objective "statistical power" of a series of 20 patients.
2. The evaluation of the 20 patients, was it all done by the same team? Were the results independently verified.

Although our series is a long follow-up, I would like to show some results of our series of patients:

107 patients with confirmed MS were screened for CCSVI, in 97 patients CCSVI non-invasive (CT, Duplex) diagnosed (independently diagnosed by vascular surgeon and radiologist).

81 patients

* 64-balloon dilatation
* 2 Valvulotome
* 8 cutting balloon
* 7 stenting

No complications

29 patients are monitored, using Doppler and using an internationally validated questionnaire (MSQOL-54 instrument) and after treatment as reported by every individual of these 29 patients, the quality of life has improved. Statistically, this is even more significant.

When the last patient in this group has reported, (one year follow up) results will be openly published.

Despite these figures both by us and in other centers, how can you, with a much smaller number of patients, go on saying that there is no link between MS and CCSVI? Would't it be logical to consider this theory, because of the spectacular results? Currently I still believe that CCSVI may not be the primary cause of MS, but in certain forms of MS it surely plays a very important role in the development of MS. I therefore call for a comprehensive inter-disciplinary dialogue so that the MS patients by a combination of classical pharmacological treatment and interventional treatment, can get the optimal treatment of the moment.

Yours sincerely,

Roel Beelen, M.D.
Aalst
Belgium
I'm ready, I'm ready !
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Postby cheerleader » Sat Jun 19, 2010 1:45 pm

Thank you so much for this info joge and Mark W. Really good stuff from Dr. Beelen. Also enjoyed seeing that Dutch TV clip.

Joge--if you can size down spongebob and make him smaller, the page will be easier to read.

thanks again,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Lyon » Sat Jun 19, 2010 4:23 pm

.
Last edited by Lyon on Sun Nov 20, 2011 8:21 pm, edited 1 time in total.
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Postby joge » Sun Jun 20, 2010 12:04 am

cheerleader wrote:Thank you so much for this info joge and Mark W. Really good stuff from Dr. Beelen. Also enjoyed seeing that Dutch TV clip.

Joge--if you can size down spongebob and make him smaller, the page will be easier to read.

thanks again,
cheer


The size shows HOOOOW happy I am. Dr. Beelen ballooned my left en right IJV's last week, thursday! Stenosis was 80-90%. Now the veins are 14mm in diameter. And I feel a different person! Note that I had low expectations, because of my PPMS!

But to please you, I found an other pic :P
I'm ready, I'm ready !
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Postby cheerleader » Sun Jun 20, 2010 8:42 am

joge wrote:
The size shows HOOOOW happy I am. Dr. Beelen ballooned my left en right IJV's last week, thursday! Stenosis was 80-90%. Now the veins are 14mm in diameter. And I feel a different person! Note that I had low expectations, because of my PPMS!

But to please you, I found an other pic :P


:lol:
Thanks, Joge. Appreciate a smaller spongebob. I don't have MS..just aging eyes and brain. Glad you met Dr. Beelen, and thanks for sharing his information with all of us. Glad he is studying CCSVI and will be writing up a paper next year.
cheer
"F" is for friends who do things together, "U" is for you and me, "N" is for...what? I can't remember the FUN song anymore!!!
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby joge » Sun Jun 20, 2010 10:36 am

A little off topic, but, why not! I'm happy and singing all day: :lol:
Or, maybe it's On topic: we, MS people are Spongebob, and our neurologists are Plankton. And the good thing is: at the end Plankton starts to feel a tingle and starts singing along with Spongebob !!

===========================

Spongebob: It's not about winning, it's about fun!
Plankton: What's that?
Spongebob: Fun is when you...fun is...it' like...it's kinda...sorta like a...
What is fun?? HERE...Let me spell it for you!

Spongebob:
F is for Friends who do stuff together.
U is for You and me.
N is for Anywhere and anytime at all.

Sea Creatures:
Down here in the deep blue sea!

Plankton:
F is for Fire that burns down the whole town.
U is for URANIUM...BOMBS!
N is for No survivors when you're-

Spongebob:
Plankton! Those things aren't what fun is all about!
Now, do it like this,
F is for Friends who do stuff to-

Plankton:
Never! That's completely idiotic!

Spongebob:
Here, Let me help you...
F is for friends who do stuff together.
U is for You and me, TRY IT!

Plankton:
N is for Anywhere and anytime at all.

Sea Creatures:
Down here in the deep blue sea!

Plankton:
Wait...I don't understand ...I feel all tingly inside...
Should we stop?

Spongebob:
No! That's how you're supposed to feel!

Plankton:
Well I like it! Lets do it again!

Spongebob:
Okay!

Spongebob & Plankton:
F is for Frolic through all the flowers.
U is for Ukelele.
N is for Nose picking, chewing gum, and sand licking.
Here with my best buddy.

(Laughing part)

Sea Creatures:
Down in the deep blue sea. :P :P
Last edited by joge on Sun Jun 20, 2010 11:03 pm, edited 1 time in total.
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Postby fogdweller » Sun Jun 20, 2010 12:33 pm

joge wrote:Dr. Beelen ballooned my left en right IJV's last week, thursday! Stenosis was 80-90%. Now the veins are 14mm in diameter. And I feel a different person! Note that I had low expectations, because of my PPMS!



I too have PPMS and it is VERY ENCOURAGING to hear someone say that there is some improvement that may be possible. Improving Aching and tired legs, and the so difficult to describe feeling of there being "something wrong with reality." would be wonderful. You can always hope.
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Postby joge » Sun Jun 20, 2010 11:09 pm

For 'normal' people, the improvement may look tiny; for me, it is big!

e.g.
Less tired
Better, deeper sleeping
Better walking (straight)
Stronger left foot
Stronger left hand (eating with fork is possible again, playing piano is improving)
Picking up things is easier
Walking up en down the stairs is easier
I'm feeling better mentally, beacause of this, and I'm better company
My wife is happy!
etc.

Okay, my dad, aged 78 is still faster than I am, but this is a great improvement, only three days after surgery.

Back on topic: this is not possible in the Netherlands, but it was done in Belgium. dr. Beelen MD; the best there is!
I'm ready, I'm ready !
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