Dr. Haacke/Dr. Reichenbach (Germany) CCSVI case 1

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

Postby Ernst » Sun Oct 25, 2009 7:17 am

I found this latest from Haacke very interesting, cause Finland's first ms-mrv was done couple of days ago and radiologist statement was something that "there is narrowing, related to sternocleidomasteoideus muscle compression" and Haackes page similar text:

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My wife's 3 yrs post video: http://www.youtube.com/watch?v=eLeqLps8XR8

Our family: http://www.youtube.com/watch?v=p_QCKxeQAlg
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Postby mrhodes40 » Sun Oct 25, 2009 9:08 am

compress the jugular veins somewhat


That is going to be key, how much compression results in verfiable reflux? what percentage of blockage is enough to induce collateral circulation?

In hearts when talking arteries insurance companies will pay for angioplasty when it is above a certain level, for example if it is greater than 50% blocked....... If it is less than that it is a watchful waiting that is done--in other words we'll watch for more specific symptoms and redo diagnostics to see if we get more blockage that is treatable in the future.

I am not surprised that there may be some thresh hold where by before that level of blockage you do not get actual pathology.

It makes me think of those persons who they find MS type lesions on autopsy when in life they were not known to have MS--might they have such a low level of obstruction the level of damage is likewise almost insignificant with enough plasticity to overcome any notable symptoms?

I am glad they are accumulating a data base on this new material so quickly, we need this information!
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Postby SammyJo » Sun Oct 25, 2009 12:39 pm

Do we know if the cases Haacke publishes are getting stent or balloon corrective procedures? I hope they aren't getting left with the pretty pictures and "good luck"!
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Postby px125 » Sun Oct 25, 2009 12:57 pm

Ok, but we need to remember that the association is not MRV and MS but OBSTRUCTION + VENOUS FLOW and MS.

A good MRV may be a first step, but what matters is what happen about functioning of venous system, not only morphology.

Go on...
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Postby Ana » Sun Oct 25, 2009 1:13 pm

SammyJo wrote:Do we know if the cases Haacke publishes are getting stent or balloon corrective procedures? I hope they aren't getting left with the pretty pictures and "good luck"!


The patient of case 1, riader, is trying to find at the moment a doctor in Germany who is willing to try the procedure. At the moment the doctors here are rather unwilling and a lot of them, especially the neuros, are considering CCSVI a kind of nonsense. So most of us have already problems to find a doctor willing to do the doppler scan and if we find one they are usually not trained in CCSVI so the risks are high that their results are false. So at the moment most germans are travelling to Poland to get the examination by Dr. Simka.

riader is quite lucky to have run into the doctors at the university of Jena. Prof. Reichenbach took part in the developpment of MRT SWI and works with Prof. Haacke. Unluckily they don't have any funds for this at the moment so they probably won't be able to examine a lot of people or at least we must pay for it from our own money. riader hopes that -since his case is offically published - the odds have become better that there is one doctor who wants to be the first one in Germany to cure a MS patient. They already said at the Jena university that he has "driven the whole university crazy with this CCSVI", so they are very interested in it by now.
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Postby Ana » Mon Oct 26, 2009 5:38 am

cheerleader wrote:Thanks Ana! The interesting thing is that this is alot like May Thurner syndrome in the legs, where the right iliac artery pushes against the left iliac vein and crimps it. This is what Dr. Simka first suggested to me when he studied the vein interior of MS patients, and Dr. Dake used to base his stent intervention (stents are the protocol in May Thurner) The artery is stronger than the vein, it can't compete. Will be interesting to see how many MSers have this particular condition-
cheer


Dr. Schelling just posted in our german forum that he happened to find a case in western Austria, too. The patient is suffering more and more from a progressive form of MS. The crossing of the carotid artery is pressed towards the jugular vein especially when he bends his neck.

I guess this might be a classical diagnosis of CCSVI in the next years to come...
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Postby jay123 » Mon Oct 26, 2009 6:21 am

Could this possibly be related to l'hermittes, the tingling sensation some MS'ers get when bending their neck?
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Postby Sharon » Mon Oct 26, 2009 8:45 am

Ana -
you wrote
Dr. Schelling just posted in our german forum that he happened to find a case in western Austria, too. The patient is suffering more and more from a progressive form of MS. The crossing of the carotid artery is pressed towards the jugular vein especially when he bends his neck.


Is it possible for you to link us to the posting?
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Postby Sharon » Mon Oct 26, 2009 8:49 am

I'm not sure if this presentation from Haacke has been posted
http://www.ms-mri.com/presentations/1.pdf

This is a repeat of the research which has been posted - there are some good Power Point slides which could be used to present to doctors.

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Postby Ana » Mon Oct 26, 2009 10:58 am

Sharon wrote:Is it possible for you to link us to the posting?
Sharon


Here it is (Doctor Schelling's nick is alfonso :wink: ):

http://csvi-ms.net/forum/viewtopic.php? ... 3&start=20
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Postby Sharon » Mon Oct 26, 2009 11:52 am

Thanks Ana -
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Postby mrhodes40 » Mon Oct 26, 2009 2:57 pm

carotid crossing....especially when he bends his neck


I have WONDERED about this. What if you have an intermittant type of anomaly something that is there under certain conditions especially.

My first big definite exacerbation happened after I painted our entire house inside with my head cocked back because I painted many high locations and all the ceilings too.......

You just wonder if the "benign" person has a intermittent issue that crops up from time to time but has such good circulation between incidents and enough brain plasticity to actually recover. I have read that benign persons eventually accumulate damage though ti takes a long time. Just a thought that I keep having.
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Postby SammyJo » Mon Oct 26, 2009 3:07 pm

Marie,
Neck injury has been crossing my mind too, I've seen various discussions about injury as an MS trigger over the years. I was in a car wreck about a year before MS started, bad neck injuries.
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Postby mrhodes40 » Mon Oct 26, 2009 3:20 pm

Sammy I hear you there!!

but it does seem to take years to develop these to the level of actual lesions, note the kids with stenosis and 90% having MS 20 years later (10% still have not crossed over)and the fact that it is known in the case of venous insufficiency in the legs it takes a long long time for lesions to happen; they can't even make a good animal model cause they do not live long enough.

But I want to clarify that in the case of my painting I see this as possibly the "neck event" that pushed what was in my case a congenital issue over the edge of functionality..ie I already had issues and lesions (at least one lesion was old) but the neck effort and straining made it worse ie past critical level. Perhaps this is common?

but then again we might find people with stenosis and not lesions--yet, that is. They should find people like that actually..

Rokkit may be an example oligoclonal bands but no lesions to see.
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby CRHInv » Mon Oct 26, 2009 7:03 pm

Oh my gosh, Marie! When I read what you wrote today, below, I was surprised:

My first big definite exacerbation happened after I painted our entire house inside with my head cocked back because I painted many high locations and all the ceilings too.......


This is from my introduction:

My symptoms began this year in February. I had decided to paint the interior of an entire house by myself


I totally think cutting in all those high ceilings played a roll in this. I have to agree that this "neck event" pushed my case along. I will find out soon if I do have the congenital issues.
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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