MS / MRV / SWI new web site!

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

MS / MRV / SWI new web site!

Postby CureOrBust » Mon Oct 05, 2009 5:39 am

I have been chasing (some may say stalking... but that's for a court to decide.... I digress) one particular professional (Dr Haake... you didn't hear me say that...) for a few weeks now, and he has told me they are working on a "Protocol" for using MRV's for looking for CCSVI in MS. He informed me of the web site http://www.ms-mri.com to be starting soon, which is NOW up.

I haven't checked yet, but I hope to find the "Protocol" for MRV's on the site somewhere. I haven't looked at it yet, but feel free to find it before me 8)

This is the guy who has been working on SWI.

From my understanding, they are hoping to have MRV's (& SWI's) performed independently all over the world, and the results collated, maybe on this web site.

So, if you are like me, and have been hoping for some instructions for a local, inexperienced in CCSVI & MS radiologist to perform an MRV, its possible its somewhere on this site. please... please... please...

There's also the "old one" http://www.nice-mri.com
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Postby mrhodes40 » Mon Oct 05, 2009 7:03 am

I am filled with wonder and joy at this new site! He is explaining this paradigm from a radiology perspective and offering specific steps to allow ANY radiology office with the tools a way to participate!

Three steps to demonstrating that CCSVI can be found with either MRI or for those sites able to do so with MRI and ultrasound (US).
1) Demonstrate with on the order of 10 or so cases per site that there are problems with either the jugular vein or reflux in the brain, or with the azygous vein and prepare a white paper for this topic for publication using the proposed first pass protocol.
2) Refine the protocol as needed to include US if MRI alone proves unable to see all the damage (and this may be indeed the case if there is valvular damage that MRI cannot see). Prepare a white paper on this protocol and get all the MR manufacturers to offer such a protocol on their systems. Such protocols should be available on both 1.5T and 3T scanners worldwide.
3) Propose a second phase study with again 10 or more cases per site with the refined protocol and where possible ultrasound validation. Increase the number of sites


This gives us a framework to ask local Radiology offices to do this work, to get going on it! THis sidesteps the whole treatment issue and jump starts the research.

did you notice on the first page he says
If the thalamostriate system is affected with increased iron content along the venous system as I believe it is, then this all falls into place. CCSVI may just be the etiological source we have all been looking for. If so it provides great hope for MS patients worldwide and we cannot and should not wait years for funding to allow us to demonstrate this point. We need to establish an international protocol to attack this as the torch bearers for people suffering from MS.


I am so grateful that you found this immediately, Cure. I will add a section the the research thread to link Dr Haackes materials.
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
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Postby Loobie » Mon Oct 05, 2009 7:28 am

Good, freakin' job!!!
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Postby cheerleader » Mon Oct 05, 2009 7:42 am

WOOT!!!!
I'm so glad to know I'm not the only creepy doctor stalker on here. I was leaving Dr. Haacke alone, but THANK YOU, CURE!


What an AMAZING SITE -so amazing, it gets RED letter treatment :)

MS-MRI

love you and your never give up ways, Cure-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Mon Oct 05, 2009 8:01 am

I added a whole section to the research thread post number 2 on page one..........

it has the SWI MRI link as well as a link to the new one CUre posted today,

WOW this gives us some real resources . I ahvea long letter explaining CCSVI to a local radiology office about ready to go, can you imagine how much better that will go when they read it by having these persuasive arguments for why they ought to get involved now right at hand?? ANd tohave available the TOOLS too?

Iti s just way cool
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
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Postby chrishasms » Mon Oct 05, 2009 8:16 am

123
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Postby mrhodes40 » Mon Oct 05, 2009 8:20 am

I have to say this:

From day one the biggest concern has been in asking doctors to take on a patient who might want treatment for an unproven paradigm.

I was able to get the head of the department of vascular surgery to test me for reflux with dopplers...he was open to my plea to at least evaluate me so I could know if this was an issue for me. The problem came when the doppler was done and it showed an abnormality, but he was unwilling to do anything more than that. I asked him specifically to treat under the same premise Dr Dake did, but he firmly said NO.

This new site of Dr Haacke's makes it very clear what he is asking radiologists to do: test 10 people using his protocol that he has outlined then submit a white paper to the data base. Add dopplers if needed to clarify valvular issues not visible on MRI. They'll take this data and refine it based on what they get back and then people are asked to test 10 more people with the refined protocol. They want to have the initial phase done in March. (click the "Strategy" button)

Here is what I want to know: shall we TIMSers actively contact radiology departments with THIS information? The advantage is this is a new angle in that general radiologists are not people who will treat (Interventional Radiologists do that) so there is not question of "proven vs unproven" here because there is not pressure to treat . It should be a much easier sell...........
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 cheerleader » Mon Oct 05, 2009 8:39 am

Click on the movie, too. It shows 2 left jugulars are shown on 4D MRV. Is that one of our own? Lew or Mel....do you want to claim that funky left jug? Maybe you should ask for royalties?

For those who haven't had the pleasure of seeing the MRV...this shows what it can display, and how wonderfully clearly the image shows collaterals. Notice how it rotates...this is essential to see all the various angles of the venous system. This is why Dr. Dake uses it.
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Mon Oct 05, 2009 8:50 am

As long as that picture doesn't make me look fat...... :lol: . But seriously, I don't remember if that's me or not. Can't see it anymore though since Dake jammed a stent in the valve!

This is the first thing I've sent to my old neuro. (the one I really like but had to leave due to ins. reasons) that he emailed me back on. I think this is just what the Dr. ordered!! After all, who wouldn't LOOK. We're not asking them to treat, JUST LOOK. By virtue of the fact that this is the only thing he has responded to me on, it must have something behind the thinking because this guy is crazy smart.
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Postby SammyJo » Mon Oct 05, 2009 9:10 am

Here is what I want to know: shall we TIMSers actively contact radiology departments with THIS information?


Please post a format of what to say that will get their attention, and I will call/write my radiology office.

There must be forums/journals for radiologists, maybe Dr Haake is going to broadcast this. I'm sort of stunned to see someone from the medical profession taking up the CCSVI cause, to speed things up for patients.
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Postby Sharon » Mon Oct 05, 2009 11:28 am

This is so interesting! I will be knocking on email "doors" again with this information. We now have a document to hand to the radiologists and to the neurologists. Marie wrote:
Here is what I want to know: shall we TIMSers actively contact radiology departments with THIS information?
Yes, I think so especially if we have been a patient.

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Postby mrhodes40 » Mon Oct 05, 2009 1:35 pm

Well if you goto the site as Cure posted it HOME page HERE

then click "research" so that you go Research HERE

then print up the documents in the window related to MS protocol as below:
MRI Protocol for MS-MR parameters
MRI protocol for MS-Detailed sequences
MRI protocol for MS-scanning procedure

you will have very technical information for the Radiologist to use...

I don't see why the home page plea to Radiologists by Dr Haacke is not the best?

In the last few years, I have been proposing that venous damage in multiple sclerosis is implicated by increased iron content in the basal ganglia and thalamus. But the interest and association of MS with veins dates back to Fog (1) in 1964 with a major decade's long effort to convince people of the role of the mechanical effects of changes in venous flow by Schelling (2). However, the excitement comes from a proof of concept that MS is a chronic cerebral spinal venous insufficiency (CCSVI) by Paolo Zamboni and his team (3). This exciting work done with ultrasound and followed by a corrective surgical procedures shows that we should have been looking outside the box (brain) to find the problem in the brain. There is a great deal of evidence in both atherosclerosis and chronic venous disease that changes in shear stress can cause a biological response that is very similar to what we see in MS (see for example the work by John Bergan (4)). In fact, it is a logical explanation as to why the entire brain is affected in MS, why the disease tracks backward along the venous drainage system, and why it emanates from the white matter near the ventricles in the drainage of territory of the medullary veins. If the thalamostriate system is affected with increased iron content along the venous system as I believe it is, then this all falls into place. CCSVI may just be the etiological source we have all been looking for. If so it provides great hope for MS patients worldwide and we cannot and should not wait years for funding to allow us to demonstrate this point. We need to establish an international protocol to attack this as the torch bearers for people suffering from MS.


I'm thinking along the lines of a simple cover letter in addition to this information...something to introduce yourself and why you are interested in having this locally.

Think so?
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 Sharon » Mon Oct 05, 2009 2:27 pm

Marie - I agree. Print and send Dr. Haacke's home page - that is exactly what I did this morning. I also sent the link to the website.
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Postby cheerleader » Mon Oct 05, 2009 2:30 pm

Great idea, Marie! Jeff will be taking the Haacke website information to his neurologist at his next check-up (when he unveils the fact he was the first stento-teer) Think I'll stay home and let him explain.... having the Haacke in with the Zamboni and Jacobs info will add even more oomph to the case.

I think bringing this to radiology departments at universities will be a good way to go.

Having Dr. Haacke come forward in this brave and provocative way is so heartening. He is saying, "This is real- look at it for yourselves! We cannot wait to help these people! Let's do it NOW!"

oh, it's a good day!
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby mrhodes40 » Mon Oct 05, 2009 3:31 pm

Having Dr. Haacke come forward in this brave and provocative way is so heartening. He is saying, "This is real- look at it for yourselves! We cannot wait to help these people! Let's do it NOW!"



Yeah, right on! That is what I mean anything else I might write or someone else will detract from this simple weighty message. I mean who in their right mind would want to listen to some wack-a-loon nurse from TIMS instead of Dr Haacke? He's the MAN! I am sooooo jazzed by his coming out this way.........
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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