This Is MS Multiple Sclerosis Community: Knowledge & Support

From the Hubbard IRB---
As Dr. Zamboni has stressed, it's about flow--
Here's what Dr. Haacke found when analyzing the first 50 cases--49 had abnormal flow.

Truncular Venous Malformations --10
One or more stenosis--12
Bulging at lower jugular--3
Abrupt contrast change--3
Jetting and then filling in to normal---1
Missing jugular---1
Pinched jugular--8
Normal anatomy but abnormal circulatory flow--7
Normal anatomy but reflux--3
Normal anatomy but stasis--1
No abnormal flow---1

Here's the whole presentation from October 18th
http://www.ms-mri.com/presentations/was ... al-web.pdf

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

Haacke needs to put some points up on the board for team CCSVI with a published paper or all we'll ever hear about using MRV's is how the Dutch study used them to prove that these sort of variations are normal and are unrelated to MS.

Cheer-has Haacke studied any healthy controls? We really need a control group to compare these findings to. On their own, they appear quite impressive, but what we really need to know is their deviation from whatever is the "norm".

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Marc
www.wheelchairkamikaze.com

I would just like to add that the Haacke protocol done through Hubbard was not entirely correct in my situation. The report found reflux in both jugs, but the IR only found one jug stenosed. So while these statistics may provide some interesting data points, the protocol still needs some tweaking to improve its accuracy.

ok,ok.

They got to the Moon, which is ok, but what about Mars, Venus, Alpha Centaury?

Dr Haacke is currently testing normals, Marc. He was the first, and is happy to report he has great blood flow. He's now testing students.
cheer

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

ikulo---it's not about architecture, it's about flow. Dr. Zamboni said that to me in Bologna (he was worried about Jeff), and he keeps saying it. It's why he wants dopplers done to his protocol. Reflux is not only created by stenosis (note those with "normal anatomy and abnormal flow"--it can be inverted valves and flaps which are not detected on MRV, but only by doppler....The main thing is to make sure that you no longer have reflux when you get a check up.
cheer

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

This is a ground breaking piece of research, which should be welcomed by pwMS. The cost of before and after MRVs may be an issue for some but for me the key recommendation from Mark Haacke is:

A consensus or white paper on how to do the PTA should be prepared.

This should mean that pwMS receive the best therapy.

MarkW

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Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 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

I liked Zivandof's thing at ectrims where he said MRV was bad. Dont know how to put it beisde this Haake stuff that says mrv is good.

MRV without flow quantification is bad. That's your standard MRV. Haacke's protocol is good and includes flow--- You need to know flow, not just architecture. We know SO much more than when Jeff was tested.
cheer

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

From the report, an explanation for what jetting and filling in to normal could be:

My question is: I 10 out of 50 are truncular malformations, are the other 40 still trucular?

I'm confused, as I thought it was better to have an MRV... Is it or is a doppler ultra sound best?

I will try my hand to explain to you Thornyrose what Cheers was explaining with the MRVs. Before with a regular MRV, it would show the vein only (architecture) or as a bird's eye view of the vein structure. With Dr Haackes MRV, he can also show the blood flow which is similar to Zamboni's ultrasound doppler where it also shows flow and direction of it.
The doppler ultrasound is very good but only with a well trained tech and
as per Dr Zamboni's strict protocol. As of now there are only few that are well trained to follow these protocols.
Friends feel free to correct me if my assumptions are misguided.

Take Care All

Normb

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In a perfect world, my Neuro would like to be a vascular specialist.
'92 diag RR - '05 SP

Good question....these "truncular malformations" Dr. Haacke mentions are webs, missing veins, inverted valves and very specific things that develop in utero. We just don't know yet if things like "pinched jugulars" like Jeff has form in utero, or as the body grows and muscles impinge the veins later. All of CCSVI lesions may not be formed in utero...I think the jury's still out on this one.

Norm--that was a terrific explanation. The Haacke protocol isn't your average MRV....it shows flow (like doppler)
cheer

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