Findings at FCSC Vancouver/Canada

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

Postby jay123 » Thu Jan 28, 2010 6:50 am

happy_canuck wrote:
jay123 wrote:But I think Cheer's point is they do not have the trans-cranial doppler needed to do the complete test. Unfortunately it sounds like this study will not be producing accurate results unless they follow the complete protocol. Hopefully the Europeans (who are they?) will set them straight.


jay123, the False Creek Centre is a private clinic in Vancouver. It is not performing a study of CCSVI at all. It is offering both Doppler (but not echo Doppler) and MRV scans for CCSVI for a fee.

I think the study you mean is the one being held at UBC, which is the main university in Vancouver. They have not done any scans yet. They will be doing scans for both CCSVI and iron deposits once they get going.


Thanks, I edited my post and changed the word to 'clinic' from study.
Now, if they aren't performing accurate testing that people are paying for aren't people getting scammed by them then?
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False Creek Studies

Postby goddles » Thu Jan 28, 2010 7:45 am

[Thanks, I edited my post and changed the word to 'clinic' from study.
Now, if they aren't performing accurate testing that people are paying for aren't people getting scammed by them then?]

We are performing the MRV studies and the Doppler Ultrasound.
We are not doing the Transcranial doppler.

You get a highly accurate picture on MRV and you get the iron deposits.
You get high resolution doppler of the Neck Veins.

The radiology images from this clinic have been presented at UBC rounds.
The images are impressive. The Magnet is the only 3Tesla magnet open to the public in the entire country.

The radiology director at the clinic, Dr Peter Cooperberg is the deputy head of UBC department of radiology.
He is a world renown authority on Ultrasound.

So, no scam here, just the highest quality scans you can get in Canada at this time.




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Postby dialed_in » Thu Jan 28, 2010 8:07 am

Dr Godley, thank you for the reply.

I had a question for you though that might clear up some confusion here. There has been talk of doctors from europe coming to help train your staff. Is this true, or just more internet rumour?

Also, will you be getting a transcranial doppler in the near future to help with these tests?
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Postby Jugular » Thu Jan 28, 2010 8:35 am

When one considers variable results with patients such as these, one has to allow for the possibility of variable results within the patients themselves.

Impaired venous draining is a fairly serious condition. Acute blockage of the JV, as noted in the mountain man study I made a thread about, produced immediate MS-like symptoms. When one is dealing with a chronic condition, the abnormalities may be much more subtle.

One possibility to consider is that the testing may have been done during an MS “low season” where disease activity is typically lower. Studies have demonstrated that MS attacks are subject to seasonal fluctuations with spring typically being a high season. Thus, patients who have abnormalities that aren't detectable on one day, may have notable abnormalities on another day (when their disease is more active).

Were Zamboni’s tests done during a particular time of year? Either that or his testing protocol was much more sensitive. Reasonably, one would expect some variability within the patients themselves.

Those that have received "normal" results at False Creek should consider being retested when their disease is in a more active state. Those doing studies such as these should consider doing repeat testing to determine if there are such fluctuations. For instance, is it possible for someone to have 80% blockage on one day and 20% on another?

I don’t think we should blame the testers or shoot the messengers. We need to look hard at the empirical data and see what’s there rather than what we’d like to see. Otherwise we’d be engaging in the same sort navel gazing that seems to typify a lot of the MS autoimmune research.
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MS Seasons

Postby fiddler » Thu Jan 28, 2010 8:49 am

Sorry, Jugular, but I'm not sure I follow your logic. The theory that CCSVI is the primary causal factor of MS does not say that it is the thing that directly causes MS symptoms (except perhaps hypoxia): iron deposits in the brain and auto-immune reactions possibly being the secondary direct causal mechanisms of symptoms. If CHRONIC CSVI is a major primary cause, I would think that the CCSVI condition would be almost always present and detectable, regardless of MS symptoms. The only caveat to that would be cases where the stenosis is an "on-again/off-again" thing, where a collapsed vein periodically reopens and closes spontaneously or a valve mis-functions only part of the time.
...Ted
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Postby Billmeik » Thu Jan 28, 2010 9:01 am

Those that have received "normal" results at False Creek should consider being retested when their disease is in a more active state. Those doing studies such as these should consider doing repeat testing to determine if there are such fluctuations. For instance, is it possible for someone to have 80% blockage on one day and 20% on another?


hold it. CCSVI testing has totally nothing to do with the state of a patient's MS. If they are benign, or having an attack the CCSVI doesn't change.

Also I think fall is a time for attacks far more than spring, fwiw.
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Re: MS Seasons

Postby Jugular » Thu Jan 28, 2010 9:08 am

fiddler wrote:Sorry, Jugular, but I'm not sure I follow your logic. The theory that CCSVI is the primary causal factor of MS does not say that it is the thing that directly causes MS symptoms (except perhaps hypoxia): iron deposits in the brain and auto-immune reactions possibly being the secondary direct causal mechanisms of symptoms. If CHRONIC CSVI is a major primary cause, I would think that the CCSVI condition would be almost always present and detectable, regardless of MS symptoms. The only caveat to that would be cases where the stenosis is an "on-again/off-again" thing, where a collapsed vein periodically reopens and closes spontaneously or a valve mis-functions only part of the time.
...Ted


Hey Ted. My "variable" logic is that the secondary effects of CCSVI such as auto-immune reactions to iron deposits and the like will vary with the primary causal factor, i.e. venous insufficiency. Lets presume that the toxic agent of interest here is iron deposits caused by blood reflux. If the reflux is greater (one would expect) so should be the secondary damage. Variations in the degree of venous insufficiency would account for the variation in MS symptoms and nerve damage that is typical of the disease.

The variations of which I speak are not just about the RR course of the disease, but also on fluctuations in the "progressive" part of SP and PP courses.
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Postby cheerleader » Thu Jan 28, 2010 9:13 am

If we can stick to facts, not supposition. Chronic cerebrospinal venous insufficiency, as defined by Dr. Zamboni, is present at all times. It is not seasonal or variable. It is more obvious in some MS patients, and MAY be more acute during exacerbations.

Here is Dr. Haacke's very thorough protocol. The MRV is not for detecting iron deposits (that is SWI-MRI, and is only a diagnostic tool for iron depositions, NOT CCSVI) The MRV protocol contains specific directions for how to administer the contrast dye, to see the architecture of the veins.

I hope Dr. Godley or someone on his staff will be attending the Hamilton conference.

Here is Dr Haacke's protocol:
http://www.ms-mri.com/potential.php

facts, not guessing-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Jugular » Thu Jan 28, 2010 9:16 am

Billmeik wrote:Also I think fall is a time for attacks far more than spring, fwiw.


I think it depends where you are.

However,
the course of these changes in MS activity varied
between different geographic regions. For
example, the peak exacerbation rate in relapsingremitting
MS was observed in the July through October
period in northeastern Ohio,14 in the winter
and spring months in Switzerland,15 and in the
warmer months in Arizona.16 Recently, further support
for the view that season may influence (subclinical)
disease activity has been provided by a study
that showed a striking annual variation in the number
of active MRI lesions.


From http://www.direct-ms.org/pdf/EpidemiologyMS/Seasonal%20Cytokines.pdf
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Postby Jugular » Thu Jan 28, 2010 9:27 am

cheerleader wrote:If we can stick to facts, not supposition. Chronic cerebrospinal venous insufficiency, as defined by Dr. Zamboni, is present at all times. It is not seasonal or variable. It is more obvious in some MS patients, and MAY be more acute during exacerbations.


Hey Cheer. I'm just trying to come up with a rational explanation to explain the False Creek results (other than CCSVI isn’t as prevalent as what Zamboni reported or False Creek isn’t testing properly). I don't think it is unreasonable to suppose that the degree of insufficiency could vary within an individual such that at times it is only detectable using certain sensitive equipment and advanced protocols, and at others it is plain for all to see.

I think we should be prepared for the possibility that the results of the Buffalo study may not show as robust of a link between CCSVI and MS as what Zamboni found.
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false Creek Studies

Postby goddles » Thu Jan 28, 2010 9:32 am

To answer the question:
We are expecting Dr Simka to spend a day at our clinic when he comes to Vancouver.
I will most likely go to Hamilton.
Dr G.
The company that makes the transcranial doppler is Esaote.
We are going to look into this doppler.
Our MRV protocol is an adaption for 3T from Dr Haacke
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Re: false Creek Studies

Postby jay123 » Thu Jan 28, 2010 10:35 am

goddles wrote:To answer the question:
We are expecting Dr Simka to spend a day at our clinic when he comes to Vancouver.
I will most likely go to Hamilton.
Dr G.
The company that makes the transcranial doppler is Esaote.
We are going to look into this doppler.
Our MRV protocol is an adaption for 3T from Dr Haacke


Doc,
Thank you for being on here and answering these questions. I think you can see where when low results are published such as at the beginning of this post questions are going to be asked, just ask skeptics question the extremely positive results that were shown by Dr. Zamboni.
In my opinion all the results should have an asterisk next to them (like the steroid juiced baseball records!) until the full protocol and equipment is used.
Thank you for offering the tests though and expanding the awareness.
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Re: false Creek Studies

Postby Cece » Thu Jan 28, 2010 10:36 am

goddles wrote:The company that makes the transcranial doppler is Esaote.
We are going to look into this doppler.
Our MRV protocol is an adaption for 3T from Dr Haacke


Hopefully it is the transcranial doppler that will make the difference, if you are able to acquire one.

Edited to say: I still see the results from False Creek as being positive for CCSVI. They found 6 confirmed and 15 possibles. There's no control group to show that, on random healthy people, they'd have found 0, but that's the assumption in place from Zamboni's research.
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby mangio » Thu Jan 28, 2010 10:45 am

Dr G,

Thankyou so much for that very clear information about your clinic.
Possibly we just all want this so much to be the answer that we
have lost some perspective. Your data is very important and I
wish you well in all your endeavours regarding CCSVI and please
thank Dr Simka as well.

Proud of you all and deeply grateful,

mangio
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Postby zap » Thu Jan 28, 2010 10:53 am

cheerleader wrote:Chronic cerebrospinal venous insufficiency, as defined by Dr. Zamboni, is present at all times. It is not seasonal or variable. It is more obvious in some MS patients, and MAY be more acute during exacerbations.


Could it be variable by posture? As you know I didn't have significant blockages show up @ Stanford (just a narrowing of the left jugular at the jaw level) ... but I tend to think visible results may vary depending on how the head is being held, supine or upright, etc ... ?
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