Had a CCSVI scan done yesterday in Ontario...

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

Postby Reytan » Mon Mar 01, 2010 4:32 pm

I was tested by Mara as well. She said there is not much of the flow in my left jugular vein. There is a narrowing and turbulences in my right one. Mara is a very nice and dedicated lady to deal with. I am still waiting for the official results from the radiologist.
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CCSVI in Frankfurt

Postby Biggie » Wed Mar 24, 2010 6:46 pm

Not sure how to use this site yet so hopefully this is correct. How do I go about contact the Dr. in Frankfurt to get this done? How much did the MRV and doppler U/S cost at Dixie. Montreal is charging 2300. Your help is appreciated.

savouryourlife wrote:I am scheduled to do the procedure in Frankfurt on Monday. Well the mrv on Monday and the procedure on Tuesday.

Anyone have any idea where to stzy in frankfurt?
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Postby savouryourlife » Wed Mar 24, 2010 7:03 pm

I did the mrv in Frankfurt at a cost of 1200 euro [1700 Cdn].

Dr. Vogl preferred that he do it, since he was doing the procedure. It just made sense.
Feb 18, 2010 Eco-Doppler Vaughan, MRV Frankfurt, left INT Jugular valve problem x2, RRMS since 1996, Angioplasty in Frankfurt March 10/10<div>Inclined bed therapy - 09/09/10</div>
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Postby Hockeydad » Thu Apr 01, 2010 6:51 pm

How much did the Doppler cost in Barrie? I know it's 450.00cdn in Montreal. My GP wrote a blanket referral for any treatment I requested. I too have seen Dr Gray at St Mikes. He didn't pooh pooh the whole CCSVI thing, but as has been written, he is cautiously optimistic.
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Postby youbetcha » Thu Apr 01, 2010 7:34 pm

With your doctors requisition, you shouldn't have to pay anything as its covered under OHIP.
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Postby PCakes » Thu Apr 01, 2010 8:40 pm

Private diagnostic clinics in Canada still require a Doctors req for most procedures, and, yes, you still have to pay.
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CCSVI

Postby savouryourlife » Fri Apr 02, 2010 5:29 am

Yes you can pay private clinics.
So far, I have not paid for one test in Ontario but I am using regular avenues of getting testing... ie req from doctor
doctor schedules procedure
it is covered by OHIP

I paid for an MRV in Frankfurt because the doctor doing the procedure wanted to do his own. But, once I saw how quickly he scanned it and that seriously, a disk could have easily been given to him, I realized I agreed to just throw away $1,700. I think if they aren't satisfied with what they see, then they can decide to do their own.

Take matters into your own hands. Have the testing done for free. Save your money for the procedure. Even Sclafani says he understand people will want to do their own tests if they are covered by insurance.
Feb 18, 2010 Eco-Doppler Vaughan, MRV Frankfurt, left INT Jugular valve problem x2, RRMS since 1996, Angioplasty in Frankfurt March 10/10<div>Inclined bed therapy - 09/09/10</div>
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Postby youbetcha » Fri Apr 02, 2010 6:32 am

My reply to Hockeydad was in regards to the testing in Barrie - which will be covered under OHIP with doctors req. - NOT private clinics.
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Postby mangio » Fri Apr 02, 2010 8:14 am

SLife, Does Mara explain as she
does the exam or is it just presented in a report later at doctors office?
thanxs
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My Scan and Doppler April 15

Postby seanthecaper » Fri Apr 02, 2010 9:16 am

I am scheduled for the test on April 15, which is 100% covered by the clinic. Not through reciprocal billing through OHIP which gets reimbuirsed by MSI in Nova Scotia.

The clinic receptionist, Amanda, assured me that the tests were being done as part of a trial so I am responsible only for the flight to and from Barrie, plus ground transportation, meals, and lodging of course.

I wouldn't pay anyone for testing - a money grab in my opinion. As a Canadian, I believe that we should at least be provincially funded for the test. But, since it is experimental, the onous is not on the government. That is their loophole to not spend and to keep their health care budgets in check. Government is not unlike big business - it is all about bottom line.

The procedure is going to take years to be an approved and funded treatment in Canada, so if I do have CCSVI, I unfortunately have to find my own way of getting treated. Dr. Knox at the Saskatoon MS Clinic has made that clear by her comments.

link (http://www.mschristian.org/msc/index.ph ... ian-doctor)

That means New York City or Poland for the liberation treatment. I think it's a damn shame that the poorest and weakest have to pay such prices and put ourselves in the hole financially just for a chance at a normal life.

I had an appointment at the AMEDS Clinic in Poland for the liberation treatment on April 21, but declined to go because I want to make sure I have CCSVI before investing that kind of money.

I told Ms. Cichy, the patient coordinator, that if I do have CCSVI then they will hear from me. But, I will insist on just the treatment. If they want to assess the problem, and the Barrie scan is not good enough, then I will look to New York City for the liberation.

At least Dr. Sclafini isn't trying to make it a money grab by requiring his own personal scan when it is unwarranted. If you have CCSVI, you have it. I am assured that the Barrie Clinic knows what they are doing, since the IR, Angela was trained by Zamboni.

Follow-up if there are complications will be easier logistics-wise and financial-wise if people get treated in North America.

The world can be tough on us MSers, that's for sure. But, we will prevail, come hell or high water!

Sean McNeil
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W5 Coverage

Postby Campus » Fri Apr 02, 2010 10:03 am

Saturday April 10th CTVnews program W5 will be having a follow up proogram on the Liberation Treatment. A must watch.
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Re: W5 Coverage

Postby youbetcha » Fri Apr 02, 2010 10:40 am

Campus wrote:Saturday April 10th CTVnews program W5 will be having a follow up proogram on the Liberation Treatment. A must watch.

Thanks for the heads up!
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Doppler Scan

Postby Campus » Fri Apr 02, 2010 12:07 pm

I went to Barrie to have my veins scanned and the report said positive for the right side. (all covered by OHIP) However, the Vascular Surgeon is not taking on any new patients at this time. So where am I blocked and by how much I cannot find out. I had my GP send me to another vascular surgeon in Newmarket because they said that they had the proper protocol to do this and the report came back normal - no stenosis. Now I am really confused. I think it is my Azigos vein that is blocked personally but I am unable to find out. I asked my GP to refer me to have an MRV but he said the hospital is refusing to do them. Talk about frustrating. My MS was not too bad (RR) until I had Radiation treatment for Breast Cancer and then I started walking with a cane. Five years late the Cancer returned in the same breast and I had to have Chemo. After that I had to walk with a walker, couldn't take a step without holding on to something and was then diagnosed as SP MS.
If this procedure is going to help relieve the symptoms of MS it seems to be a no brainer to do it. Find out later if it is the cure or cause of MS. Don't let us suffer anymore.
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MS Society, Ontario

Postby Campus » Fri Apr 02, 2010 12:32 pm

CCSVI Web Streaming Event (in English and French)
The Multiple Sclerosis Society of Canada will be holding two webcasts for the general public and the media on the topic of chronic cerebrospinal venous insufficiency (CCSVI) and MS.

Date: Wednesday, April 7, 2010
Time: 1:00pm - 3:00pm ET

Speakers: Yves Savoie, President & CEO, MS Society
Dr. Jock Murray, Founding Director, Dalhousie MS Clinic
Karen Torrie-Racine, person with MS
Moderator: Marlane Oliver, morning news anchor, 680 News

Date : Wednesday, April 14, 2010 (in French only)
Time : 1:00pm - 3:00pm ET

Speakers : Yves Savoie, President & CEO, MS Society
Dr. J. Marc Girard, neurologist and president of the Association des neurologues du Québec (Quebec Neurologists’ Association)
Eve Deschênes, person with MS

Participants will also have the opportunity to post a question online via Twitter or Facebook.

For those that cannot attend, you can sign-up to receive notification of when we post the videos to YouTube.

Contact us (1-866-922-6065 and ask for "the webcast extension") if you have any concerns.
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Postby letsfundccsvi » Fri Apr 02, 2010 6:11 pm

If one does not broach the subject of MS and just gets a requisition to have their veins checked due to some symptom or other, and then those veins are found to be blocked, for what possible reason could OHIP be denied to get the veins unblocked?
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