New Study casts doubts over vein blockages in people with MS

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

Postby L » Tue Jun 15, 2010 5:16 pm

1eye wrote:I spent quite a few hours yesterday and today, attending first the Parliamentary Take Note debate, which you really gotta see. Dr. Zamboni and Dr. Simka were there at the Parliamentary committee meeting this afternoon. It really seems to me that the dam is about to burst or the clouds or the seed pod or something.


sounds good. Can the debate be seen online?
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Postby L » Tue Jun 15, 2010 5:28 pm

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Postby MrSuccess » Tue Jun 15, 2010 10:02 pm

PX - those links are interesting for sure. But are they offering opinions based on hands-on vascular experience .... or just repeating what they were taught in Neuro training ?

Not to be disrespectful .... as I admire their profession ..... but I think the time has come for the Neurology people to work with vascular experts ..... and do all that can be done.

I fear big ego's may be getting in the way.

Look how well Dr.Zamboni and Dr. Silvi work as a team. :idea: :idea:

That's what is needed ...... team work. Both professions working together.




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Reflections

Postby smokey » Tue Jun 15, 2010 11:42 pm

I felt distress/dismay when I saw the recent research appearing to strongly dispute the existence of CCSVI. I didn't realise quite how much I have emotionally invested in, as well as attempted to understand this new theory. For those of us who have undergone the venogram/angioplasty it's going to be confronting to read vigorous argument against the theory. It's clearly going to be an area for robust debate in scientific journals of one persuasion or the other as well as the media for quite some time. This is something we should expect and prepare for. The challenging of strongly held beliefs about MS being an auto immune disorder will lead many to hold even more tightly to their beliefs and current research agendas. Maybe we'll get to 'it's not either/or but both'.......perhaps room for all..... in time.
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Postby concerned » Wed Jun 16, 2010 7:39 am

What's the pathology of NBES? (neurologist big ego syndrome)
I don't get how all neurologists suffer from this? And how are vascular specialists immune?
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Postby cheerleader » Wed Jun 16, 2010 8:45 am

cheerleader wrote:These were vascular specialists performing the ultrasounds. Ursula was tested at Charite, and she posted on here and said they were vascular docs.

I really wanted to keep this discussion away from attacking the doctors, and simply looking at what might have been different in their protocol. What I found was that they employed valsalva manuever and looked at internal jugular vein valve insufficiency as a measure of venous reflux and Dr. Zamboni utilized normal breathing. They also measured 2 points, and Dr. Zamboni's protocol looks at the entire jugular. Their TCD machine was different, and they admitted that interpretations of TCS scans are variable. That's all I could find in the German paper...but I'm sure that Dr. Zamboni's team will answer the study, if he is given the opportunity to reply in the Annals of Neurology.
cheer


One more time...the conversation needs to be about the methodology, not people. The doctors claim to utilize Dr. Zamboni's CCSVI doppler protocol. They look for the 5 quantifications, but the used different tests to find these In the paper, they state repeatedly, valsalva is an adequate means to test for venous reflux. But it is not. Dr. Zamboni found reflux in absence of valsalva maneuvers. They claim that 2 locations of measurement (one for jugular and one for vertebral veins) are enough. But it is not. Dr. Zamboni's team measured the entire jugular. They claim that there is no real protocol for TCD testing, and do they dismiss it out of hand. Dr. Zamboni has a TCD protocol, and it was not followed.

It was good for me to read the entire paper, because the discrepancies were obvious. For anyone truly concerned, buy the paper online. It will put your mind at ease. I would assume the the Annals of Neurology will publish Dr. Zamboni's reply.

Again, I ask that we stay away from shooting the messenger, and simply look at the science. Thanks-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby thisisalex » Wed Jun 16, 2010 11:20 am

hi there

in Hungary TCD is a neurologist only territory. I mean the examination. i dont know what is it like in other parts of the world...

and... Great work again Cheer! I liked your explanation about the different protocol used in Germany.

alex
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Postby Sotiris » Wed Jun 16, 2010 12:46 pm

After reading the article and all the previous posts, I have the following remarks.
The only mention to the methodology regarding testing for CCSVI is the following
“Assessment of ‘CCSVI’ criteria: A specific effort was undertaken to search for the presence of one or more of the following criteria by which ‘CCSVI’ has been defined:
(i) a reflux >0.88 sec in the IJV and/or the VV, (ii) reflux in the deep cerebral veins (DCV), (iii) B-mode evidence of proximal IJV stenosis, defined as local
reduction of CSA ≥ 50% in a recumbent position (0°), (iv) flow not Doppler detectable in both IJVs and/or both VVs (v) a missing IJV diameter decrease in the sitting position, so called “reverted postural control” of the main cerebral venous outflow pathways.”

It is not clear if the testing was correctly performed.

The following
“Blood volume flow in the IJVs was assessed as apical as possible in the upper region of the neck close to the mandibular angle. Vertebral vein (VV) flow was assessed either between intervertebral segments C4/C5 or C5/C6. Measurements were obtained at an identical site in supine and upright body position. Ultrasound assessments were performed in an identical fashion in patients and controls.”
refers to the measurement of the blood flow (volume and velocity), which is something that has not been tested by Zamboni’s team. It is not clear if they used this method also to test CCSVI criteria 1 and 4.

Blood flows were averaged without a note to the total number of measurements. This may be problematic since they note:
“Where the IJV was completely flat no CSA and therefore no BVF measurements could be obtained.”


Regarding CCSVI criterion number 1, they argue that
“The Doppler-sonographic observation of bi-directional flow in parts of the IJVs [by Zamboni’s team] may be caused by a pulsation artifact from the nearby carotid artery and hence be misinterpreted as a venous reflux, particularly if blood flow measurements were not assessed along the entire IJV.”


Regarding CCSVI criterion number 2, they managed to test several of the DCVs and the flow was almost always orthograde (except for the straight sinuses of one pwMS). They managed to test 96% of the Basal veins of Rosenthal, 64% of the deep middle cerebral veins, 19% of the straight sinuses, and 40% of the transverse sinuses (data for pwMS). The percentages are not high enough for having a definitive answer.

Regarding CCSVI criterion number 3, they say that
“Regional narrowing of the IJV and VV was assessed by insonating their entire accessible length using the sagittal plane of the B-mode imaging. A local CSA reduction of ≥ 50%, following the suggestion by Zamboni et al. was considered a stenosis.

Actually, Zamboni used the B mode of the Doppler to identify stenosis due to membranes, septa etc. The suggestion that a stenosis means a ≥ 50% reduction in the CSA refers to a PTA.

Regarding CCSVI criterion number 4, they argue that
“Depending on different ultrasonographic indices e.g. the pulse repetition frequency, blood flow may not be detectable using the duplex technique, especially when the BFV is low. The BFV is often low in the VVs and also decreases with age leading to a lower detection rate in the elderly. With respect to the IJVs, a wide vessel lumen and/or a state of exsiccation (leading to low central venous pressure) may reduce the BFV immensely and render detection of the vessel in the duplex mode impossible.”
They found that the criterion was fulfilled for 5/56 of pwMS and for 1/20 of HC.

Finally, 4/56 pwMS fulfilled CCSVI criterion number 5 (and 3/20 of HC)
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Postby Stacemeh » Wed Jun 16, 2010 3:35 pm

"No cerebro-cervical venous congestion in patients with multiple sclerosis"
This is a rather broad statment to make after looking at such a small cohort of patients. :evil:

K, I'm not here to bash experts, but I think this study has realy only served to highlight the fact that imaging is sometimes as much an art as it is a science. I wonder if any of these guys actually went to Italy and looked in person at what Dr. Zamboni's team is doing? I think they need to go there have a look THEN go home and work on it in their own labs.

Describing their procedure as virtually the same implies right off the top that it was not quite the same so to me it is not so surprising their results were different. Especially, when I am pretty sure that all involved to date have commented that accurate noninvasive imaging has been difficult.


:roll:
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Postby cah » Wed Jun 16, 2010 4:42 pm

Stacemeh wrote:I wonder if any of these guys actually went to Italy and looked in person at what Dr. Zamboni's team is doing?


I think if they did this, they would have mentioned.
"There is only one good, knowledge, and one evil, ignorance." Socrates
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Postby cheerleader » Wed Jun 16, 2010 5:42 pm

cah wrote:
Stacemeh wrote:I wonder if any of these guys actually went to Italy and looked in person at what Dr. Zamboni's team is doing?


I think if they did this, they would have mentioned.


No--because Dr. Zamboni's major point mentioned in Bologna was that he does not employ valsalva and no breath holding (apnea) His measurements are made during normal breathing. The Germans used apnea and valsalva.

PatientX and I have been going over the paper up in General land...here's my post from up there discussing the breathing....

from the paper
Where the IJV was completely flat no CSA and therefore no BVF measurements could be obtained. In case of marked
respiratory variation of CSA and flow velocity measurements within subjects they were asked to briefly hold their breath after a normal exhalation, and measurements were obtained during these episodes of apnoe. Page 7 of 39


This seemed really odd to me...why would the IJV be completely flat, and no BVF measurements could be obtained? And then why did they ask the subjects to hold their breath and take blood flow during breath holding? This is where the protocol differs from Dr. Zamboni's. Dr. Z specifices that there should be no breath holding, which I assume affects the blood flow. But I do not know how, nor am I going to get a sonographer's
degree anytime soon.

But this paper talks about how breath holding changes jugular venous pressure:

"To determine the mean jugular venous pressure, the examiner should observe the nadir of the venous column on inspiration and then the crest of this column on expiration. Next, the midpoint of the excursion of the venous pulse during normal respiratory cycles is estimated visually. Exaggerated breathing or breath holding distorts the normal mean venous pressure and should be avoided."

http://www.ncbi.nlm.nih.gov/bookshelf/b ... &part=A622

Anyhoo...all I know is Zamboni made a big deal in Bologna about no breath holding, no valsalva, his method was different. I really hope his reply is published, because it's vitally important that if his technique is so revolutionary, he needs to make sure techs understand that before publishing papers saying they have "followed his criteria."
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sotiris » Thu Jun 17, 2010 5:00 am

The German group has indeed a) checked for IJVVI by use of the valsalva manoeuvre, and b) measured CSA during apnoea (in case of marked respiratory variation). However, these details about CSA were given, when the authors described their technique in measuring the blood flow volume and velocity, which acc. to them was important and missing from the studies of Prof. Zamboni. It is not clear if they used the same techniques when measuring the 5 CCSVI criteria. From their results, the latter is something one can surely assume.
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Postby cheerleader » Thu Jun 17, 2010 8:40 am

OK, I won't be playing junior scientist anymore. Dr. Sclafani has seen the doppler technique in action in Ferrara, and is going over the German paper. Here's a comment on his thread regarding the fact that his IRB is being held up because of the German paper--he will need to explain the difference in Dr. Zamboni's protocol to his panel. Regarding my uneducated review-

this was helpful to me.

the reason dr zamboni wants the study done in inspiration is to activate the thoracic pump and increase blood flow through the jugular veins. it is the overwhelming of the outflow volume that leads to the reflux in ccsvi.


I have a feeling the BFV numbers and breathing issues will be the crux of the difference. The Germans added those additional criteria for some reason...we'll see. But I done tryin' to 'splain, Lucy.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Training Indicated to Diagnose CCSVI

Postby Shayk » Thu Jun 17, 2010 5:33 pm

Hi

I can't say I'm up to speed with everything that's been posted and this may be repetitive, but it's a reminder of the research Sotiris posted indicating training was needed to diagnose CCSVI.

Now, I don't know if the researchers/technicians were trained or not, but I personally suspect not.

The reproducibility of Colour doppler in chronic venous insufficiency associated with multiple sclerosis

Examinations performed by untrained personnel failed to correlate with the results obtained by trained personnel.

The full article is available (again thanks to Sotiris).

Sharon
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Postby Stacemeh » Thu Jun 17, 2010 6:08 pm

Quote:
Examinations performed by untrained personnel failed to correlate with the results obtained by trained personnel.

The full article is available (again thanks to Sotiris).



Thanks,

I knew there had to be something about this, I wonder if Dr. Sclafani has a copy of this one?
(He must)
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