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Posted: Wed Mar 16, 2011 7:38 am
by patientx
Cheerleader wrote:his is an idiot proof way to show that there's something wrong....not neuros waving doppler wands around saying there's nothing there
This is a gross mis-characterization. The study in which Doepp was lead author included Drs. Valdueza, Schmierer and Schreiber, all experts in ultrasonography of cerebral blood vessels, all all referenced by Dr. Zamboni himself in his papers. Similarly, the other unpopular studies have had vascular experts working on them.
Cheerleader wrote:here's Dr. Zamboni's response (which has no abstract online by the Annals of Neurology (what a surprise!) but I got a copy of the whole letter)
Not surprise at all - the letter has no abstract online, because it is a
letter, not an article. The entire letter is online, but you need a subscription to the journal. Just because Dr. Zamboni says increased cerebral blood flow actually indicates cerebral venous insufficiency does not make it so. This makes little sense anyway - higher blood flow actually indicates venous insufficiency, a condition of impaired blood flow?
.just a collar, and a readout. It is cost-efficient and operator independent,
A strain gauge operator independent? Please.
Posted: Wed Mar 16, 2011 8:30 am
by cheerleader
patientx wrote:
This is a gross mis-characterization. The study in which Doepp was lead author included Drs. Valdueza, Schmierer and Schreiber, all experts in ultrasonography of cerebral blood vessels...
--but they are not experts in evaluating central and extracranial veins. This is Dr. Zamboni's specialty for thirty years.
Cheerleader wrote:here's Dr. Zamboni's response (which has no abstract online by the Annals of Neurology (what a surprise!) but I got a copy of the whole letter)
Not surprise at all - the letter has no abstract online, because it is a letter, not an article. The entire letter is online, but you need a subscription to the journal. Just because Dr. Zamboni says increased cerebral blood flow actually indicates cerebral venous insufficiency does not make it so. This makes little sense anyway - higher blood flow actually indicates venous insufficiency, a condition of impaired blood flow?
First of all, letters of response are routinely published in full and available without online subscriptions in all medical journals. I've found such letters published online in Neurology and the Annals of Neurology. I can give you the links. Dr. Zamboni's letter should have been published online, especially since the Doepp study is a response to his work and calls it false. But the letter received no fanfare, no press---as the Doepp study received notice in medical online and print journals throughout the world.
Secondly, you are incorrect. It is NOT higher blood flow. The Doepp study showed restricted flow in pwMS. It is a lack of change in bloodflow from supine to upright that illucidates this point. In normals, the blood returns to the heart in a timely manner when moving from supine to upright. In pwMS, the blood is blocked in the central veins, and takes longer to return to the heart. This illustrates a LACK of bloodflow. How wonderfully ironic that it was the Doepp study that first pointed to this!
just a collar, and a readout. It is cost-efficient and operator independent,
A strain gauge operator independent? Please.
Yes, please, dear patient... a strain gauge, like this collar, is much more operator independent than a doppler wand. Why do you take this so personally? Everyone knows why I do....I make no secret of my interest in this research, because it has changed my husband's life. Wouldn't you, as a very well-educated patient w/MS, like to know if your central veins are blocked?
cheer
Posted: Wed Mar 16, 2011 9:17 am
by MrSuccess
if I may .... I would like to simplify what we are talking about on this thread ..... which is Dr. Zamboni's latest discovery ..... the plethysmography neck collar .........
to begin with ..... a simple example .
before you lay on the ground , TWO separate lengths of garden hose ..... and you observe water flowing out of each one ..... more or less the same amount [volume] ... the hoses are deemed to have -FLOW-
then you pick both hoses up at one end ..... ONE hose releases the water with a whoosh ..... it comes out fast .... that hose is now empty ....
the other hose ...slowly releases the water held within it .... you wonder why...... until you notice several kinks in that hose ..... or .... maybe there is something inside the hose that is interfering with the water flow..
either way .... you know there is a problem ...... common sense and gravity tells you ...... BOTH hoses should drain fast and completely when held in the vertical position .......
In some cases ..... neither hose drains freely and completely .... when held vertical .....
you now have a real puzzle on your hands ..... your garden hose is defying established logic ...... it FLOWS when lying flat ..... but will not flow ...... when you hold it vertical .....
As you NEED the water to flow ....... you must find out why it is not .....
But you are in luck . You have a brilliant Italian next door neighbor . You explain your predicament to him .... he has an idea .... he attaches an external flow meter to your suspect garden hoses ....... and confirms your suspicions ........ you need to repair your garden hose .
capire ?
Mr. Success
Posted: Wed Mar 16, 2011 10:26 am
by Cece
I like the hose analogy.
Two separate lengths of garden hose. One has weird spaghetti-like collateral attachments, the other is a nice straight hose. Water is flowing through the hoses. It is coming out faster on the one that is nice and straight. It is coming out slower on the one with the weird collateral attachments and the obstruction somewhere within. (Probably a congenital obstruction, from the factory where the hose was made.)
Even though the flow is faster on the good hose and slower on the bad hose, if you measure the amount of water in the hose at one snapshot in time, it has about the same water as the other hose at the same moment in time, particularly since the volume of water in the collaterals on the funky hose are added in to its total. The volume at any given second is about the same but the volume over time or the flow is markedly different.
From that point on, as MrSuccess has said, when you pick up both hoses, gravity assists and the good hose whooshes out and has a reduction in volume. The bad hose does not whoosh out but continues with its slow flow and does not display that same reduction in volume.
It's of interest, I think, that the technique involves aggressively sitting the patient up. I'm thinking of when a person stands up too fast and gets light-headed for a moment; the heart has to adjust, doesn't it, and there are a few seconds where not as much blood is being pumped in to the brain. This could be why, in the healthy patient, there is a reduction in outflow volume? Less inflow, even caused naturally by the body's need to adjust upon sitting up, means less outflow. The MS patient would have the same momentary lack of inflow but the outflow obstructions and congestion would mean the volume remains high in the neck.
It is really an interesting method. I am still curious if hospitals in the US have these machines or if there has been any use for them in other disorders or diagnosis processes.
Does my brilliant Italian neighbor look particularly handsome in an ascot? ;)
Posted: Wed Mar 16, 2011 10:43 am
by CCSVIhusband
I (as admittedly into the CCSVI theory as I can figure it out) don't think it's a good idea to be throwing poor analogies, that can be easily disputed, out there.
The hose analogy isn't how the jugulars work ... because it's when laying down that the hoses (jugulars) don't work in those with CCSVI.
It has nothing to do with them having "kinks" when vertical ...
I don't think we need to invite people to attack analogies ... that's easy.
We need to give them the science and say, you can't argue with this.
Posted: Wed Mar 16, 2011 10:51 am
by cheerleader
Cece wrote:
It's of interest, I think, that the technique involves aggressively sitting the patient up. I'm thinking of when a person stands up too fast and gets light-headed for a moment; the heart has to adjust, doesn't it, and there are a few seconds where not as much blood is being pumped in to the brain.
Absolutely, Cece. There is a studied correlation of orthostatic hypotension/autonomic dysfunction/postural syncope(the light-headed, dizzy when I get up sensation) and MS.
Background: Autonomic dysfunction is common in patients suffering from multiple sclerosis (MS) and orthostatic dizziness occurs in almost 50% of these patients. However, there have been no reports on postural orthostatic tachycardia syndrome (POTS) in patients suffering from MS.
Methods: The patients were included for analysis in this study if they had POTS with either a prior history of MS or having developed MS while being followed for POTS. Postural orthostatic tachycardia (POTS) is defined as symptoms of orthostatic intolerance(>6months) accompanied by a heart rate increase of at least 30 beats/min (or a rate that exceeds 120 beats/min) that occurs in the first 10 minutes of upright posture or head up tilt test (HUTT) occurring in the absence of other chronic debilitating disorders. We identified nine patients with POTS who were suffering from MS as well. Each of these patients had been referred from various other centers for second opinions.
Results: The mean age at the time of diagnosis of POTS was 49±9 years and eight of the 9 patients were women. Five patients (55%) had hyperlipidemia, 3 (33%) migraine and 2 (22%) patients had coronary artery disease and diabetes each. Fatigue and palpitations (on assuming upright posture) were the most common finding in our patients (9/9). All patients also had orthostatic dizziness. Syncope was seen in 5/9(55%) of patients. Four patients (44%), who did not have clear syncope, were having episodes of near syncope. The presence of POTS in our study population resulted in substantial limitation of daily activities.
http://www.medsci.org/v07p0062.htm
Very interesting....
cheer
Posted: Wed Mar 16, 2011 11:57 am
by MrSuccess
ccsvi husband - it is my understanding that the Doepp Study has reported a difference in blood flow ..... with their findings being ...... that when vertical ...... they found blood to be stagnant .....
Our precious Dr. Zamboni [ who looks dapper in his ascot
] calmly pointed out the Doepp Study error.
And has now provided the Doepp investigators with new technology that proves Dr. Zamboni's theory ..... stands .
It is my understanding .... that the PNC [ plethysmography neck collar ]
has just now been introduced to the medical world.
Who builds them and how they can be obtained ...... remains to be seen.
I am certain the Neurological community will be chomping at the bit .... to get their hands on one ...... when they become available .
However this new tool .... will require training .....
My garden hose analogy ..... although simple ..... does help pwMS understand the basic principle . You as an Engineer ... may find my effort to simplify .... not to your satisfaction . Feel free to do so.
What we are talking about here ..... is the dynamics of fluid flow.
This much I know . [ and a hellovalot more ]
Pressure = resistance to flow
Flow >>> moves from high ..... > to low ....
Your heart is a fluid pump ..... it pumps fluid [ blood ] into your head ....
We all know what happens when a '' return '' line is dysfunctional
Mr. Success
Posted: Wed Mar 16, 2011 12:18 pm
by CCSVIhusband
Sorry, I wasn't criticizing, per se (and never really got to finish my thought as I was late running to a meeting) ...
Anyway, now I'm off that train of though ... so carry on.
Posted: Wed Mar 16, 2011 12:53 pm
by NoDrainer
Just musing about the possibility of having an "at home" version available that is affordable and simple to operate for pre and post procedure monitoring purposes. Sure would take a lot of the stress out of the picture!
If the device could also digitally store each days read-out and show occlusion trends, the results could be e-mailed to the IR in timely way.
This would be so handy to keep an eye (or cuff) on at-risk family members down through the years and nip CCSVI in the bud.
Posted: Wed Mar 16, 2011 1:19 pm
by ikulo
"Tachycardia associated with POTS may be a cardiac response to restore cerebral perfusion."
POTS is also associated with Ehlers Danlos.
Posted: Wed Mar 16, 2011 1:25 pm
by codefellow
NoDrainer wrote:Just musing about the possibility of having an "at home" version available that is affordable and simple to operate for pre and post procedure monitoring purposes. Sure would take a lot of the stress out of the picture!
If the device could also digitally store each days read-out and show occlusion trends, the results could be e-mailed to the IR in timely way.
This would be so handy to keep an eye (or cuff) on at-risk family members down through the years and nip CCSVI in the bud.
Very, very good point. Imagine when symptoms come back (as they do for some people). The first thought is always to wonder if restenoses has occurred. A home version of this collar would quickly provide either confirmation or re-assurance!
Posted: Wed Mar 16, 2011 1:44 pm
by MrSuccess
nodrainer - ahhhh ..... now you're talking . The PNC will play a huge role in day's to come. So far ..... only 100 people have been subjected to this possibly historic medical device.
When I think of the possibility's ....... early CCSVI detection ..... easy and inexpensive flow monitoring ....... WOW...... this is a Big Deal .
The MRI was only invented in 1989 . Look what that has produced.
And now Dr. Hubbard has kicked it up a notch [ there's an understatement of the year ] and is producing fMRI's ...... which are basically '' movies '' of the brain v. still photographs . W-O- W
This is sorta-kinda - off thread .... but ..... I have to mention something I read about Dr. Hubbard's presentation at Ferrara ... It floors me to read that Dr. Hubbard reports that 20 pwMS that he tested for neurological malfunctions ..... and then treated ....... MATCHED the neurological functions [ tests ] of healthy controls , AFTER having the procedure.
And after watching a recent interview Dr. Hubbard gave ...... this gentleman has both feet firmly planted on the ground .
Back on subject .
It is a FACT that reduced or stopped blood flow INTO the brain has dire consequences . Stroke or Death.
And yet our Neurological '' friends'' fail to see the dire consequences of blocked or reduced blood flow OUT of the brain ..... as being important.
Shame on them.
Mr. Success
Posted: Wed Mar 16, 2011 2:21 pm
by patientx
cheerleader wrote:patientx wrote:
This is a gross mis-characterization. The study in which Doepp was lead author included Drs. Valdueza, Schmierer and Schreiber, all experts in ultrasonography of cerebral blood vessels...
--but they are not experts in evaluating central and extracranial veins. This is Dr. Zamboni's specialty for thirty years.
And they are not just "neuros waving doppler wands."
Cheerleader wrote:Secondly, you are incorrect. It is NOT higher blood flow. The Doepp study showed restricted flow in pwMS.
Actually, I am not incorrect, though I shouldn't have said cerebral blood flow. In the paper on the Doepp study they found the following average values for blood flow volume (in ml/min.)
Patients:
IJV Supine 499
IJV Upright 318
VV Supine 14
VV Upright 60
Controls:
IJV Supine 480
IJV Upright 123
VV Supine 16
VV Upright 67
In both supine and upright positions, MS patients had higher blood volume through their jugular veins. There was no difference in the vertebral veins.
Cheerleader wrote:Yes, please, dear patient... a strain gauge, like this collar, is much more operator independent than a doppler wand.
I assume you're being sarcastic here, so I'll follow suit. No, strain gauges like those used in the collar suggested Zamboni (and the ones I've used in the lab), don't generate very, very small voltages, which require very accurate zero offset and calibration. Sure, you just hook them up and read whatever value you want.
Why do you take this so personally?
I don't take this personally, other than the fact that I have MS, so I follow whatever research pertains to the disease. But I thought some reading this forum might appreciate another side of the story, especially when other doctors and researchers are being so harshly disparaged, and wrong "facts" promulgated. But, I'm probably wrong. Most with any interest in objectivity have probably stopped reading this forum.
Posted: Wed Mar 16, 2011 3:02 pm
by MrSuccess
px - please ..... look at the chart .....more carefully ....
if these are the Doeppe Study numbers .......
let's not bother with VV Supine VV Upright , patient or control ...... as
those numbers vary little ....... Hmmmmm Hmmmmmmmmm
let's now look at the Internal Jugular Vein - IJV - numbers ..... they read :
Patients : IJV Supine [ laying down ] 499 ml/min.
IJV Upright [ sitting up ] 318 ml/min
Controls : IJV Supine 480 ml/min
IJV Upright 123 ml/min
looking at these numbers ..... I would say ..... pwMS appear to have blood flow that puts healthy controls to shame .....
any chance the Doeppe Study has their published numericals ..... bas ackwards ?
An even better question is : As the PNC collar ...... has just come to light [ there are none on the market ] ....... just How did the Doeppe Study come up with their results ?
And the VV Patient v. Healthy Controls results are suspicious .
And finally ....... this Doeppe report was dubious from the beginning .... as they reported only finding ONE patient with CCSVI .
I said it then ...... I'll say it again ....... they had to ''find '' ONE case of CCSVI in order to avoid being labeled as being incompetent in doppler radar technology .
These numbers stink like day old fish.
Mr. Success
Posted: Wed Mar 16, 2011 4:11 pm
by cheerleader
I'll try one more time, and then I'll give up. And I'll preface this with apologizing for my doppler waving crack, it was uncalled for (but did provide an interesting imaginary visual)
The chart you linked shows the problem, patient.
Patients:
IJV Supine 499
IJV Upright 318
VV Supine 14
VV Upright 60
Controls:
IJV Supine 480
IJV Upright 123
VV Supine 16
VV Upright 67
Since I am doing a lousy job explaining this, let's let Clive Beggs, the PhD biophysicist who designed a model of CCSVI and presented it in Bologna, explain.....
In his letter, Clive Beggs, PhD, from the Center for Infection Control and Biophysics at the University of Bradford, United Kingdom, says that although the findings by Doepp and colleagues challenge the previous findings by Dr. Zamboni and colleagues with regard to the detection of venous reflux in patients, he writes that he "cannot agree with the main conclusion of the article; namely that the cerebral venous characteristics of MS patients are essentially no different than healthy controls."
When the MS patients in the study were upright, he notes, the blood flow rate through the internal jugular veins was 2.5 times greater than controls, despite a similar cross-sectional area. Since blood flow through the vertebral veins was also "broadly similar, why then should a much greater proportion of the blood draining from the brain in the MS patients choose to flow through the [internal jugular veins] rather than through other extrajugular pathways?" Dr. Beggs writes.
"The only plausible answer to this question is that, for some unknown reason, the resistance of the other extrajugular venous pathways must have greatly increased in the MS patients," he added. In short, there is, "something abnormal in the MS patients," Dr. Beggs said during the Charcot Symposium.
In their response, Dr, Doepp and colleagues agreed that that particular finding requires further investigation. "Contrary to Dr. Begg's conclusions, however, we do not consider this finding to be suggestive of venous congestion," they write.
"What he didn't explain is why the volume flow in the vertebral veins is exactly the same between patients and controls," Dr. Doepp told Medscape Medical News. "We know very well when we compress the deep neck veins we have an increase in blood flow in the vertebral veins. Therefore, it's not really logical."
In addition, it is not clear why the blood volume flow was only different in the upright and not the supine position, "and you can't explain this by any flow disturbance in the neck veins," he said. "For this point we don’t have a clear explanation but at least our preliminary data from further patients say that this difference is not as high as it was presumed to be in our first study. So it's probably a side effect;... it's not really important."
In a letter of his own replying to Dr. Doepp's article, Dr. Zamboni published a high-resolution B-mode image of an intraluminal septum and noted that this is the most frequent stenosing lesion seen in CCSVI in their work. These lesions can only be imaged, he says, with high-resolution probes that are capable of exploring the jugular in the supraclavicular fossa.
Dr. Doepp's group, though, did not find frequent intraluminal jugular septation in their patients, Dr. Zamboni points out. "This underscores the urgency of establishing an internationally accepted protocol," he concludes. "In the attempt to achieve this cultural osmosis, my group is available to travel to Berlin and rescan with German colleagues the entire series by the means of the proposed methodology."
http://www.medscape.com/viewarticle/732683
So, the doctors are hashing it out. The press and neurological community will only refer to the original study, and that's why I get sarcastic. I apologize for not giving balanced information, patient. I hope people are still looking for answers on here.
cheer