Any luck in the Toronto area?

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

Any luck in the Toronto area?

Postby TFau » Sat Dec 05, 2009 1:53 pm

I'm just wondering if anyone has been successful in finding someone to look for occluded veins in the Toronto area. I know that we're close to Dr. Haacke's site at McMaster, but my understanding is that he is only collecting imaging data that you already have.

Although our neuro scheduled my husband for an MRI, he essentially refused to change the usual imaging protocal.

Also, has anyone tried to contact a vascular surgeon around here to discuss CCSVI?

Thanks,
Theresa
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Postby jimmylegs » Sat Dec 05, 2009 2:28 pm

i sort of tried but halfheartedly, had a few conversations with the doc about referrals. i submitted my contact info to dr haacke's site back when you could register and download protocol documents (is that back in the picture now?). since the w5 thing aired i am not really trying any more. if something comes up i'll post about it!
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Postby TFau » Sat Dec 05, 2009 2:38 pm

Okay - me too!
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Postby jewelia » Sat Dec 05, 2009 3:46 pm

A woman named Yasmeem Sayeed, who owns a company called Surgical Tourism Canada based in Vancouver has been asking people to call her directly. 1-877-871-4315( Toll Free). She has been trying to locate clinics that are equiped to do the appropriate testing for CCSVI. Here is her latest update

Hello Everyone:

Just providing you all an update :

Below is the info we have received from Detroit. The McMaster research group headed by Dr. Mark Haacke is overwhelmed with the enquiries and is not answering any calls or emails. As for the Clinics they are still waiting for the software to arrive from GE which will bring the machines up to date to perform the required protocols. They are also worried that they may not be allowed to scan with the new protocols until they receive some sort of official approval (which may be a long time coming). However once they receive the software, I think they will be ready to scan in early to mid January.

As an alternative I am also in touch with Hospitals in India and Germany which may be more willing to do this without waiting for approvals. We may have to start off with a couple of test cases where a person travels with the intent of both testing and treatment, however with no guarantees. I have worked out a package for the Balloon angiography with India which will cost approximately $18,000 to and this includes all investigations, visa, economy airfare, accommodation for one week, hospital stay, medical complications insurance, travel insurance, ground transport, meals, service charges and taxes.

I will have the costing for Germany within the next few days and eventually Italy as well.

Everyone registered with us will be on a priority list (First come first served basis) and we already have a registered list of 23 and growing. Anyone interested in getting on this list should complete the attached forms and either fax them to 778 574 7253 or scan and email them to info@surgicaltourism.ca

People wanting information about our firm and what we have been doing in the past 5 years should visit www.surgicaltourism.ca and familiarize yourselves. Please do not hesitate to call any time if you need further information on 1-877-871-4315

By being proactive we can be geared to be the first to benefit from this ground breaking research.

Yasmeen Sayeed. B.Sc, DHM, MBA
President & CEO
Surgical Tourism Canada Inc.
17425-64th avenue
Surrey. BC. V3S1Y8
Tel: 1-877-871-4315( Toll Free) , 604-575-4316
Fax: 778-574-7253
Email: ysayeed@surgicaltourism.ca
Web: www.surgicaltourism.ca

I'm not sure if it is premature to do the surgery at this point, but definitely getting tested is the first step. There is a clinic in Gatineau, Quebec that may be up and running sometime in January with the necessary software. You can contact Yasmeen directly to find out more about Gatineau.

Good luck!
Jewelia
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Postby TFau » Sat Dec 05, 2009 3:56 pm

That is very interesting - thanks for the tip Jewelia!

Theresa
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Postby happy_canuck » Sat Dec 05, 2009 9:56 pm

A private clinic in Vancouver (False Creek Surgical Centre) agreed to do the MRVs. You need a referral from your doctor and they still charge a fee (about $1000). They are also exploring the idea of doing the surgery in the future.

They are associated with another clinic in Winnipeg (Maples Surgical), but I don't know if they can do the scan.

If you want to follow along as a group of us explore BC options for testing and treatment, go to:
<shortened url>

One of our members is getting her MRV done Monday December 7th and I will have mine done just before Christmas.

~ Sandra
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Postby ariehs » Sat Dec 05, 2009 11:23 pm

You can get an MRV of the head and neck with a referral in several Montreal radiology clinics (I went to IRM Sud-Ouset), but there's no one out here to read them. I don't know if the radiologists there report everything is normal because there's nothing to see on the MRVs (Mine, and another MS patient I met), or if they don't know what they are looking for.
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SHOULD BE ASHAMED OF YOURSELF

Postby mohzi » Sun Dec 06, 2009 12:05 am

jewelia

My mouth dropped when I read your post. A company that is going to take $18,000 USD for about $5,000 to $7,000 worth of expenses. First of all, only a few people in the world are trained to find the stenosis as suggested by Dr. Dake, Dr. Zamboni, Dr. Simka, and Dr. Zivandov.

CCVIS is an experimental procedure, all the doctors involved have said more testing is needed. Your willingness to "help" people terrifies me.

Dr. Simka is the only person doing the procedure using the Zamboni protocol at this time. The others are on hold, preparing clinical trials.

I can go to Poland from Texas, have a stent or stents, and angioplasty, airfare, hotel and food for about $5,000. Why would any rational person want to pay 4 times that to go to India where someone is not trained in this procedure?

You scare me.
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Postby TFau » Sun Dec 06, 2009 7:54 am

Thanks for the sanity check, Mohzi!

And thanks for the information Sandra, I'll follow the site with interest. I don't recall, are there special protocols necessary for looking for the occluded veins in MRV?
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Postby jewelia » Sun Dec 06, 2009 7:05 pm

dear Mohzi,

Relax, I was only trying to find somewhere to get TESTED in Canada. I was not trying to suggest that anyone go to India to get this surgery done! Yasmeem Sayeed has been trying to find clinics in Canada that are equiped to do the appropriate testing according the necessary protocols for CCSVI. I responded to a post on a Facebook group for Canadians (MS Liberation Treatment CCSVI), asking for those interested in getting tested in Canada to call her. Her most recent update included the information about having the surgery for CCSVI done in other countries and I just passed it along for those who might be interested in what her company was offering.

From what I understand, Surgical Tourism Canada (don't like the name!), arranges for surgeries(back etc.) in other countries that cannot be done due to long waiting lists at home.

I agree that much investigation needs to be done before considering having this procedure done at all. But the first step is to get tested. If Yasmeem can help me in that respect, I am grateful. In Canada, we are accustomed to having our health care system pay for all diagnostic tests and surgeries. This is new to us and we are just trying to find out as much as we can by sharing.
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