This Is MS Multiple Sclerosis Community: Knowledge & Support

his is an idiot proof way to show that there's something wrong....not neuros waving doppler wands around saying there's nothing there

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)

.just a collar, and a readout. It is cost-efficient and operator independent,

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...

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.

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.

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.

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.

--but they are not experts in evaluating central and extracranial veins. This is Dr. Zamboni's specialty for thirty years.

Secondly, you are incorrect. It is NOT higher blood flow. The Doepp study showed restricted flow in pwMS.

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

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?

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 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."