Dr. Haacke's protocol at Amsterdam VUmc

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

Dr. Haacke's protocol at Amsterdam VUmc

Postby cheerleader » Mon Dec 07, 2009 8:38 pm

Dr. Haacke recently returned from a EU tour and helped set up a diagnostic center in Amsterdam VUmc. Here's a crummy google translation of Dutch from the press release:

http://www.nieuwsbank.nl/inp/2009/12/04/R206.htm
The MS Center Amsterdam VUmc this month launched an investigation into the relationship between MS and chronic cerebrospinal venous insufficiency (CCSVI). If it involves knowledge of MS-in the Netherlands we see it as our duty to study potential breakthroughs in MS with scientifically sound studies. In addition, the MS Center Amsterdam VUmc has worldwide fame when it comes to research with many new imaging methods. A new study called MRI venography look at the veins of people with MS and controls. The veins are the veins that drain blood from the brain. The research will undoubtedly provide important insights in the absence or presence of venous abnormalities. The aim is for the first results within a few months to present. Patients of the MS Center Amsterdam VUmc have priority in participating in this study. MS Research Foundation is currently in discussions with researchers about the possibilities regarding funding for this research.

(I found the "our duty" comment wonderfully refreshing)

Thanks to Ton in Amsterdam for alerting me to this development. For our Netherlander friends, Ton has set up a site on CCSVI in Dutch-
http://www.ccsvi.nl/

Centers in Frankfurt and Jena, Germany are coming soon. Go Dr. Haacke!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Mon Dec 07, 2009 8:58 pm

This is great news! Dr. Haacke is moving forward with lightening speed. Cheer, I agree, the statement "-in the Netherlands we see it as our duty to study potential breakthroughs in MS with scientifically sound studies. " is wonderful to read.

Thanks for posting

Sharon
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Postby Johnson » Mon Dec 07, 2009 9:01 pm

The Dutch are so civilized.
My name is not really Johnson. MSed up since 1993
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Postby CureIous » Tue Dec 08, 2009 12:20 am

When does that guy sleep?
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Research VUmc The Netherlands

Postby Inge67 » Tue Dec 08, 2009 4:04 am

Hi all,

It was great to read all your comments.
What is very funny is that you all are very positive about this development in The Netherlands (as I am by the way, it is great news!), but that the general attitude on the Dutch forum is very sceptical.

People are disappointed that it is ONLY a study, that doctors are not treating yet and discouraging patients to seek treatment abroad (Poland).

The fact that VUmc is letting VUmc patients to join the study first also met some disbelieve/anger/misunderstanding (you name it).

I don't think there is anything to be done, but I just thought I let you all know about the variety of emotions that flow the www.

I think it is a great step forward and they are moving pretty fast. I must add that I am one of the patients at VUmc, and possibly joining the study. This may count for my optimistic point of view... :D

I will keep you updated on the developments here.

Inge
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new info on Dutch CCSVI research

Postby Inge67 » Thu Dec 10, 2009 12:07 pm

Hi all,

Just wanted to share some information with you about the Dutch CCSVI research being set up. I received this today form my neuro, explaining why I wouldn't be in the patientsgroup to be researched. :(

It appears that the research objective is basic: establish the connection of CCSVI with MS.

They are enrolling MS patients with good mobility and compare their scans to non-MSers with good mobility. If they find stenosis with MS patients and none (or less) with healthy people, they can safely say that CCSVI and MS is linked. Thus being able to go from there.

As I am not very mobile (EDDS ranging somewhere between 5,5 and 6,5 self diagnosed, makes this an understatement), I am not allowed to join the trial.

Very hard for me to hear, as you may understand. I was the one that linked Dr. Haacke to this neurologist and swamped him with information derived from TIMS (great thanks for that btw). Together with Ton, the one that started the thread on CCSVI on the Dutch forum, I got VUmc interested to at least look at the subject CCSVI. So you can imagine my state of mind this morning...

This afternoon I got another email from my neuro explaining that if they find stenosis more often with mobile MS patients, they would expand the trial to less mobile MS patients. That is where I come in the picture again.

As I am convinced that they will find stenosis more often with MS-ers, I am confident that they will expand the trial in the very near future. Only thing is to be patient and wait wait wait. :(

This is all we know sofar. Thought it would be of interest for you.

Is there a way to summarize all the objectives of the studies that are currently going on in Buffalo, Detroit, Germany (?) and Italy (?). Is there a list already or should we make it?

Inge
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Postby jess » Thu Dec 10, 2009 12:14 pm

thanks ing67
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Postby ozarkcanoer » Thu Dec 10, 2009 12:20 pm

Inge, You have done a wonderful job of promoting CCSVI in the Netherlands. What an accomplishment !! This is the greatest news. I am sorry you won't be able to participate in the initial study. But you got another ball rolling and you are contributing to all of us with MS. Inge, your day will come !!
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Postby Inge67 » Fri Dec 11, 2009 1:54 am

Thanks! Just the peptalk I needed. :)

I must say that promoting CCSVI in the Netherlands is really a team effort: with the site www.ccsvi.nl there is a very active group of 36 people pestering the Dutch medical staffs. So it is perhaps a little too much credit for me only...:oops:

But we will keep up the good work!

Inge
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Postby Ruthless67 » Fri Dec 11, 2009 9:14 am

Inge67,

I just went to your site, and it is AWESOME, so much good information!! You 36 have done a fantastic job and have alot to be proud of.

Lora
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