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


Postby Gordon » Sun Jun 27, 2010 9:39 am

Quotes – Dr. Fiona Costello:

* “Dr. Zamboni’s findings have raised intriguing questions about the role of CCSVI in MS. At this point, our goal is to determine the prevalence of venous outflow insufficiency in a sizeable MS population, with validated and reliable measures of venous anatomy. Furthermore, we aim to study the concordance between the extent of venous obstruction and other established measures of disease activity.”
* “The data we obtain from our study will enhance our understanding about the role of venous insufficiency and possible consequences of myelin loss, axonal damage, and neuronal degeneration in MS.”
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Postby shye » Sun Jun 27, 2010 10:40 am

sounds promising---
Who, and where is, Dr Fiona Costello?
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Postby TMrox » Sun Jun 27, 2010 11:31 am

Dr. Fiona Costello, Hotchkiss Brain Institute, University of Calgary, Calgary, Alberta:
examining a cross-section of people with MS compared to other neurological diseases and healthy volunteers. The team is seeking linkages between vein abnormalities and different aspects of MS activity and tissue damage to gain insight into the significance of differences in vein drainage and their implications for the future treatment of MS.
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Postby Cece » Sun Jun 27, 2010 12:01 pm

It's one of the diagnostic only/association studies given money by the NMSS, isn't it?
"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 TMrox » Sun Jun 27, 2010 12:09 pm

yes, only testing.
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Postby Vivianne766 » Sun Jun 27, 2010 12:27 pm

They need to spend tax payer/ government/ somebody's money doing something. Like trying to NOT find something Dr. Zamboni has already found.

NMSS has way too much power. They started by giving out T-shirts and mugs
and now they are holding us as prisoners of this disease.
They are spending our own money to find new TREATMENTS.

We man be sick but we're not stupid.
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Fiona Costello

Postby 1eye » Sun Jun 27, 2010 12:30 pm

Fiona Costello is an opthalmologist who used to work in the Eye Institute at Ottawa General Hospital. Last position I knew about was at the MS Clinic (you know, the one where Dr. F works). I didn't know where she went after that. I used to get along OK with her when she was at the Eye place. I figure she got the study grant because of, you know, connections. Not a coincidence at all that she used to work with a neuro at the MS Clinic. There is no such thing as coincidence.[/code]
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CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience

I am not a doctor. Do not take anything I say as medical advice.
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Postby thornyrose76 » Sun Jun 27, 2010 12:49 pm

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Postby Asher » Sun Jun 27, 2010 1:22 pm

thornyrose76, your absolutly right. I'm in Poland now and I see people rising from the ashes all around me. It is criminal to withold this from people whose brains are being intoxicated while farma is counting the money and the Neuros are debating.
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Postby Cece » Sun Jun 27, 2010 1:36 pm

I feel that we have a right for research of this importance be done by experts. We need the research to clarify, not muddy the waters. It is frustrating. If anyone missed Dr. Sclafani's suggestion for what a randomized multicenter trial should expect of its researchers, it included a five day course and thirty practice procedures overseen by the primary investigator. THAT makes sense.

In Canada ill people are traveling to get this done in other countries. What we should ask Canada to do is establish testing & treatment trials across the country so that this can be done and data can be gathered while it's done. It is a political issue in Canada and I think this will be done, but I don't know how long it will take...I think in Canada there is a real role for political activism. (Sit ins, letter-writing, protests....)
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Postby eveable » Sun Jun 27, 2010 2:09 pm

I had a discussion with my neuro on Tuesday and then with the MS nurse at the clinic on Friday.

Me: We need treatment trials on CCSVI

Nurse: In Canada, we practise evidence-based medicine. We have to start by getting evidence that MS and CCSVI are linked.

Me: This was proven in Dr Zamboni's study.

Nurse: Dr Zamboni's study was too small and there were no controls.

Me: 1,000 people were tested at BNAC with controls. As well, Barrie Vasular Imaging has tested at least 500 people, another 300 tested at False Creek.

Nurse: We only have the data for the first 500 at BNAC.

Me: In another month the data from the second 500 will be released. Use that data and the data from Barrie Vascular Imaging and False Creek as well as the data from the over 1600 people who have had venograms before they were treated. Do you think it is worth it to test 200 people in Canada and hold this up for 2 years?

Nurse: Yes, because that is how evidence-based medicine works.

Really wanted to say that this scam is just a pay off to friends by the MS Society of Canada, isn't it?

But she cannot agree because that would mean her job. The neuro's can't agree because that would mean their jobs.

I feel like I live in Africa but this country is not warm enough to be the banana republic it is.

The neuro's talk was the usual people have died, this is not safe and veins do not have to be opened talk. I wanted to pull off my shoes and socks on the "veins do not have to be opened" bit to show him again my purple right foot which he had already documented as venous insufficiency. But he got out the door to fast.
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Postby mangio » Sun Jun 27, 2010 2:33 pm

Dr Magisanno could not have made it clearer. Put the drug in the patient
to see if it works. Dr Costello has been awarded 2.4 million dollars to
her lab from various agencies. I wish her success. We need this
kind of very good investigation but we are losing people everyday to
this disease. A full functioning IRB style angioplasty trial is what is needed.

Vascular specialists are advocating for this in parliament. It is just
wrong to deny this. I can't even begin to disclose the behind the scene
actions underway.

Two years of just imageing is not good enough.

We are working with the new multiple sclerosis society as well
as the new vascular treatment group and their organizations.
A second announcement is just about to be made.
We are not waiting.
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Postby jackiejay » Sun Jun 27, 2010 5:53 pm

sorry if I missed this info...but what is this "new multiple sclerosis society and new vascular treatment group?"
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Postby mangio » Sun Jun 27, 2010 6:27 pm

Both are based in the west. Very dynamic and really outstanding.
The website for the reformed ms society is up and running the
other not quite yet.
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Postby beerduff » Sun Jun 27, 2010 10:11 pm

This is the letter i received on the study.

The study team will use ultrasound, as originally used by Dr. Zamboni, and magnetic resonance imaging of the veins (MR venography). This study will help determine whether there are significant differences in the venous drainage of people with MS compared to people without MS. This will determine if trials of therapy should be directed at the veins.

We have received funding to enroll 120 MS patients. This will include approximately 65 people with relapsing-remitting MS, 20 people with secondary progressive MS, 10 with primary progressive MS, 10 with neuromyelitis optica (Devic’s Disease), and 15 pediatric MS patients. In addition, we will enroll 60 healthy participants. All MS patients will be recruited from the Calgary MS Clinic. As we have over 5,000 patients in our clinic, most interested participants will not be able to participate in this study.

Our team is eager to get started on this exciting project. However, as per any clinical research study, there are a number of administrative items that need to be completed in order to begin. First of all, the funding for the study is expected in July 2010. Secondly, we are in the process of obtaining ethics review board approval, organizing some administrative infrastructure requirements, and completing our study participation protocols. We thank you for your patience while all of the necessary components of the study are put into place before we contact potential study patients. We cannot provide any additional information until we have received approval from the University of Calgary Research Ethics Committee.
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