Findings at FCSC Vancouver/Canada

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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goddles
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Findings at FCSC Vancouver/Canada

Post by goddles » Tue Jan 26, 2010 12:55 pm

Out of 45 patients scanned to date:
6 patients have significant narrowing of the Internal Jugulars on MRV.
15 patients have other venous abnormalities that may or may not be pathologically significant.
So we are finding abnormalities.

Dr Mark Godley
Medical Director
urgentcarecentre.com

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Billmeik
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Post by Billmeik » Tue Jan 26, 2010 1:07 pm

That was honest.

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Acheron
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Post by Acheron » Tue Jan 26, 2010 1:42 pm

Less than 50%? Are they using dr.Zamboni's protocol?

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danegirl
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Post by danegirl » Tue Jan 26, 2010 1:47 pm

It somehow doesn't sound right ??!!!

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cah
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Post by cah » Tue Jan 26, 2010 2:12 pm

Did they use doppler also, or just MRV?

Assumedly they didn't follow Dr. Zamboni's Protocol pretty much as he has said "First look at 100 normals to see the difference."
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cheerleader
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Post by cheerleader » Tue Jan 26, 2010 2:27 pm

To my knowledge, they are not using transcranial doppler. Dr. Zamboni's testing is pretty rigorous...he is more concerned with flow that abnormalities. That said, they are finding abnormalities- They are an imaging facility, let's see what vascular doctors tell these patients. Dr. Godley's specialty is anaesthesiology.

http://www.nationalsurgery.com/surgeons_godley.html
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com

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Post by mangio » Tue Jan 26, 2010 2:35 pm

It's honest and realistic. The ultrasounds are evaluated by a Radiologist,
not just a Sonographer. The Centre is hosting medical personnel
from Europe very soon and that should assure clients of the quality.
txs

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Post by Zeureka » Tue Jan 26, 2010 2:52 pm

I've heard that the eco-color-doppler + MRV are not showing the same results, but results giving together a complementary picture. At least this is what Simka told me.

So on the color-doppler you can detect a flow-problem (direction/speed or absence of flow) + the diameter size of the jugular. So the artery in one direction flow is red (the red circle you see) and the jugular other direction flow should be fully blue if OK (blue circle next to it, which should also not be smaller than on the other side if OK). I saw it at my doppler-exam. I did not have a fully blue left internal jugular, but only like tickling blue spots and at one point no blood flow at all (= there was no color).

While via MRV you see other things (sorry am not a medical expert to know what precisely and have not done any MRV yet, so havn't seen pics). But I guess you see an occlusion/narrowing of the vein as in Zamboni's research study pictures? Anyone knows?

Steffi

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Post by Cece » Tue Jan 26, 2010 7:35 pm

That they are finding abnormalities at all is more positive evidence for CCSVI.
"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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Post by markus77 » Wed Jan 27, 2010 12:20 am

Received an e-mail from Dr. Zamboni this morning-

A Consensus Conference on Venous Malformations - headed by Prof. Byung B Lee from Georgetown - and experts from 47 countries- studied the evidence and unanimously voted in favour of officially including the stenosing lesions found in CCSVI in the new Consensus document and Guidelines. Now published-

http://www.ncbi.nlm.nih.gov/pubmed/2008 ... dinalpos=1

http://www.minervamedica.it/en/journals ... 09N06A0434

This paper can be brought/linked to interventional radiologists and vascular surgeons. CCSVI lesions are classified as a truncular venous malformations - which means that vascular doctors have now classified this disease, CCSVI, as congenital- and preceding MS lesions.

Vascular doctors have agreed. CCSVI comes first.

Dr. Zamboni has been speaking to medical panels around the world. Yesterday was a "4 hour machine gunning of questions" by the Italian, Canadian and US MS Societies in Milan- Dr. Zamboni said he was able to answer all the questions with scientific evidence, and was quite pleased with the meeting's outcome. He'll be in North American soon.

so basically this means if you have MS you have CCSVI. so i think they need to have some more training on the protocol plus are they using the transcranial doppler and MRV?
STAY REAL MY FRIENDS

dx 1989, spms

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Zeureka
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Post by Zeureka » Wed Jan 27, 2010 3:02 am

markus77 wrote:Received an e-mail from Dr. Zamboni this morning-

A Consensus Conference on Venous Malformations - headed by Prof. Byung B Lee from Georgetown - and experts from 47 countries- studied the evidence and unanimously voted in favour of officially including the stenosing lesions found in CCSVI in the new Consensus document and Guidelines. Now published-

http://www.ncbi.nlm.nih.gov/pubmed/2008 ... dinalpos=1

http://www.minervamedica.it/en/journals ... 09N06A0434

This paper can be brought/linked to interventional radiologists and vascular surgeons. CCSVI lesions are classified as a truncular venous malformations - which means that vascular doctors have now classified this disease, CCSVI, as congenital- and preceding MS lesions.

Vascular doctors have agreed. CCSVI comes first.

Dr. Zamboni has been speaking to medical panels around the world. Yesterday was a "4 hour machine gunning of questions" by the Italian, Canadian and US MS Societies in Milan- Dr. Zamboni said he was able to answer all the questions with scientific evidence, and was quite pleased with the meeting's outcome. He'll be in North American soon.

so basically this means if you have MS you have CCSVI. so i think they need to have some more training on the protocol plus are they using the transcranial doppler and MRV?
This is great news! I tried the links (the PubMed does not show the abstract or text only the title, the other asks payment to get the doc). Is it maybe still in the process of publication?

Says: MID: 20087280 [PubMed - in process]

Anyone has a link to the full doc or abstract?

Steffi

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Post by markus77 » Wed Jan 27, 2010 4:26 am

Hey Steffi,

i was told that we need to pay for it unless you are a doctor.....
STAY REAL MY FRIENDS

dx 1989, spms

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Post by jay123 » Wed Jan 27, 2010 5:26 am

mangio wrote:It's honest and realistic. The ultrasounds are evaluated by a Radiologist,
not just a Sonographer. The Centre is hosting medical personnel
from Europe very soon and that should assure clients of the quality.
txs
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 clinic will not be producing accurate results unless they follow the complete protocol. Hopefully the Europeans (who are they?) will set them straight.

The Buffalo study results will also be interesting in that I believe they are going to compare the results of doppler (full Zamboni protocol) vs. MRV results in both MS patients and controls. Hopefully this will produce accurate data whether doppler or mrv is a better tool or are they both accurate used correctly, and does ccsvi appear in all/most MS patients vs. controls.
Last edited by jay123 on Thu Jan 28, 2010 5:51 am, edited 1 time in total.

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Zeureka
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Post by Zeureka » Wed Jan 27, 2010 10:01 am

jay123 wrote:The Buffalo study results will also be interesting in that I believe they are going to compare the results of doppler (full Zamboni protocol) vs. MRV results in both MS patients and controls. Hopefully this will produce accurate data whether doppler or mrv is a better tool or are they both accurate used correctly, and does ccsvi appear in all/most MS patients vs. controls.
Zamboni is himself also now starting such a study.

I am on a waiting list via Bologna hospital to participate! I'm eagerly waiting that they will finally call me!

"Clinical Governance Emilia-Romagna
The Emilia-Romagna Region has approved a Clinical Governance Project which is co-financed by the Hilarescere Foundation. The 180,000 Euro grant will be used to provide evidence on the diagnostic accuracy of cerebro-venous echo-colour-doppler vs. advanced magnetic resonance in the diagnosis of CCSVI, either alone or in association with Multiple Sclerosis. The Project will be conducted in the years 2010-2011 and will involve the Centre for Vascular Diseases of the University of Ferrara, the il Be.Ne Centre and the Neuroradiology Unit of the Bellaria Hospital in Bologna."
From: http://www.fondazionehilarescere.org/eng/progetti.html

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happy_canuck
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Post by happy_canuck » Thu Jan 28, 2010 1:09 am

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.
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tiny ... 44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tiny ... 3wzmkmg</a> ~Facebook</strong><br />

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