This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi All,
Newbie here, (lurking for a while but very excited with all of the new info on CCSVI.
Just got off the phone with the MR Dept at False Creek Surgical Centre in Vancouver BC Canada and they will do the MR imaging of veins of the head and neck (with the serum creatinine blood work for the contrast media) with a requsition from your GP.


http://www.nationalsurgery.com/fcsc.html

Keep on pushing everyone, I have so much hope that the light at the end of the tunnel is getting brighter!

And thanks to all of the couragous people out there that have gone through the procedure. It has been said many times in these blogs, but you are pioneers.

Veronica:

Could you post FCSC info on this thread:

http://www.thisisms.com/ftopict-8901.html

I put your information on this facebook fan page:

<shortened url>

Thanks for making the phone call for us BCers.

Erin

I too have spoken with False Creek and want to get a referal from my doc but what exactly is she supposed to request?
I can't find Dr. Haacke's protocol anymore and ms-mri is no longer online, does anyone know what's going on?

Veronica, bless you so much for posting this information about the False Creek clinic. I had searched for days for somewhere to go to get tested.. and to find something local! Amazing! I have spoken with them, received details of costs, etc and now just have to pray that my GP will be on board to give me the requisition.

Thank you SO much!!!

Here is another Haacke website still up http://www.mrimaging.com/

Haacke collaborator in Vancouver:
Alexander Rauscher
UBC High Field Magnetic Resonance Imaging Centre, M10 Purdy Pavilion
2221 Wesbrook Mall, Vancouver V6T 2B5, CANADA
email: rauscher@physics.ubc.ca

Hi Veronica.

Thank you so much for posting this. I just had a talk with my husband about traveling to Poland and get tested/treated. We decided to give it a try after the winter Olympics. The news about False Creek is very exciting. I’m just a bit skeptical about false negatives. But it looks like a new beginning of a new direction.

Welcome, Alica
As you see I am still"working"
Erika

_________________
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse

Erika, you are sooo funny.

This topic was brought to my attention by Erika. She’s my main source of useful information.

I got a form letter back from Raushcher at ubc saying I might be able to join a study some day... false creek is me, has anyone done it?

Ok, I've never been part of a forum in my life but I need to find answers regarding the study and treatment of CCSVI. I'm wondering about the FCSC in Vancouver and what the costs are. The MS society is telling people not to run out and get their necks scanned because once doctors are in place to do their own research, which could take up to 6 months, they'll want their own scans - not ones that have take place months previous. I will check out the FCSC site more - thanks for that info. Please share anything you've experienced with them. Part of me just wants to grab my MS diagnosed boyfriend by the neck and drag him to Europe where it seems like people are actually getting this done and where I've heard as well that it won't cost a fortune. I realize that we actually have to get there...I'm running at the mouth/keyboard here - I just want to be involved in these discussions and I don't know where to begin. I'd love to wait for something that's actually covered but I fear that Canada and will sit on their hands for quite a while.

Is this a part of Dr. Haacke's research study or are they independent? In essence, will the patient or their insurance be billed for the scanning procedure or will it be covered as part of the research study?

Thanks for any clarification, NHE

I'm thinking these guys are private. I had a private mri before. cost around $2000...I think it would be lucky if this cost that much ...

Hi Veronica. Glad you contacted FCMS. Are they aware of Mark Haacke's MRI protocol? It includes head, neck, and spine (for the azygous vein). Also some additional parameters resulting in the average scan being 20-30 minutes longer.

I would also like to know if they quoted you a price and timeline to get this procedure done?

Thanks in advance.

weeble,

I contacted False Creek Surgical and spoke with their ultrasound technician. I sent them Dr. Simka's protocol for the Doppler testing and the technician is going to give it to their ultrasound physician in charge of this when he returns after December 4th.

In the meantime, she gave me the referral form to be completed by your doctor. If anyone would like a copy of this form (so we don't all phone False Creek at once!), PM me with your email addy and I'll send it along

My fingers are crossed FC will have the people, equipment, and willingness to do this. We should hear soon (maybe another week?). I will post any response I receive here and on the CCSVI at UBC MS clinic Facebook page.

~ Sandra

Hi Everyone,

Sounds like most of the questions asked here have been answered by everyone.

Yes, FCSC is a private clinic. I was quoted over $2,000 (I origingally put in the price, but took it out just incase their price changed or they change their protocol - not sure the exact protocol though.)

Like everyone has been saying, you would just need a requesition from your GP.

I've been thinking about this all weekend. Its kind of a lot to consider with the price and what may be happening in the future that could be covered under a study or normal procedure. But I know we all don't want to wait any more time than we have to.

Also, if we get the test done, then what? I mean, I don't believe anyone around is doing the stents or ballooning here in Canada yet. I guess its a good idea if you just want to know for now. Or if you are willing to travel to get the procedure done......

So much to think about! And then of course, as many posters here talk about, the risks associated with it......

I guess I'm confusing myself more than anything!

One thing I do know for sure is, is that if we keep pressing and asking for this to be taken seriously........the more people that talk about it with their Doctors, the sooner this will become a reality. Also, I think its so great to information share on this forum. I think everytime we open a link to a news story on a website, the website will see the increased traffic and notice it. I think they are more likely to look further into that story if its the 'most read' or 'most emailed' story of the week.

If anyone gets the scan done at False Creek, please pass on your experience!!