Canadian Front Lines

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

Postby broomdancer » Tue Jan 05, 2010 3:42 pm

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Re: I understand

Postby Shiraz » Tue Jan 05, 2010 5:04 pm

fiddler wrote:Hi Shiraz,
I understand what you are saying and wasn't implying that you should have gotten more information at the time (I probably wouldn't thought of it myself if I was in your shoes). But perhaps you can give me a contact name (by PM if you prefer) of someone in the department (or the name of the hospital, hopefully it has a website) so that we can follow up to try to find out how we can get some confirmed numbers.
...Ted


Hi Ted
If you're in this area I guess he's the main guy. I got the protocol from the MS Society in Barrie, and they sent it to a number of clinics (not sure how many or which ones). I do know that my Osteopath received the protocol. It might be available thru the CCSVI Facebook site. I hope that helps. Let me know if you make head way.
Cheers
Shiraz
Last edited by Shiraz on Fri Jan 29, 2010 1:49 pm, edited 1 time in total.
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Thanks

Postby fiddler » Tue Jan 05, 2010 5:15 pm

What I'd like to do is get the local or national media to do a follow-up on it. I understood that one or more of the people on this forum had contacts with the CTV people who did the original W5 story. It seems to me that CTV (or others) should want to add something to the story, and Barrie Vascular Imaging should be happy to provide the info for the free advertising it will give them.

I sent an e-mail to the BVI office manager as per their web site but it bounced back saying there was no such e-mail address. Perhaps I'll try by phone when I get the chance (tomorrow's a busy day).
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Postby jewelia » Tue Jan 05, 2010 6:03 pm

Dear Shiraz,

That is great news! Thank you - I am so grateful that you have shared your experience in Barrie. Would you mind my asking where you received the doppler ultrasound? Perhaps my GP can write a requistion (in Toronto) to have it done at the clinic that you went to.
I am seeing my neurologist on Friday for a 6 month check up, but she is not open to the whole idea of Dr. Zamboni's discovery and probably will not order any ultrasound or MRV to be done.
Here's hoping that 2010 will bring more awareness to the medical community about CCSVI. Your GP sounds amazing! I anxiously await the outcome of your meeting with the vascular surgeon.

Julia
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Re: Thanks

Postby Shiraz » Tue Jan 05, 2010 6:21 pm

fiddler wrote:What I'd like to do is get the local or national media to do a follow-up on it. I understood that one or more of the people on this forum had contacts with the CTV people who did the original W5 story. It seems to me that CTV (or others) should want to add something to the story, and Barrie Vascular Imaging should be happy to provide the info for the free advertising it will give them.

I sent an e-mail to the BVI office manager as per their web site but it bounced back saying there was no such e-mail address. Perhaps I'll try by phone when I get the chance (tomorrow's a busy day).


Hi again Ted
She is very up to date and well researched on what is happening with the CCSVI research.
S
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Postby Shiraz » Tue Jan 05, 2010 6:23 pm

jewelia wrote:Dear Shiraz,

That is great news! Thank you - I am so grateful that you have shared your experience in Barrie. Would you mind my asking where you received the doppler ultrasound? Perhaps my GP can write a requistion (in Toronto) to have it done at the clinic that you went to.
I am seeing my neurologist on Friday for a 6 month check up, but she is not open to the whole idea of Dr. Zamboni's discovery and probably will not order any ultrasound or MRV to be done.
Here's hoping that 2010 will bring more awareness to the medical community about CCSVI. Your GP sounds amazing! I anxiously await the outcome of your meeting with the vascular surgeon.

Julia


Hi Julia
I've been responding to "Fiddler" with all the details of my doppler - check that out just above. If you can't find it, write again.
Cheers
Sheri
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Re: Thanks

Postby fiddler » Tue Jan 05, 2010 9:31 pm

Shiraz wrote:Hi again Ted
I am in contact with Avis Favaro , the reporter from CTV. She is following my progress. Because I am also in TV, I offered my story details to her, and told her I would be willing to be the "Canadian woman" in her sequel. She is very up to date and well researched on what is happening with the CCSVI research.
S


That sounds great, then, Sheri... so I assume that Avis would be sending someone in to get these facts? But is that follow-up story a ways down the road? I think that all TiMSers would be relieved to hear about confirmation that another place is getting CCSVI occurrence in MS patients at rates similar to those that Zamboni was getting.
...Ted
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Go Canada

Postby Bobbi » Wed Jan 06, 2010 4:23 pm

Posted in wrong place.
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Re: Thanks

Postby Shiraz » Wed Jan 06, 2010 5:15 pm

fiddler wrote:
Shiraz wrote:Hi again Ted
I offered my story details to her, and told her I would be willing to be the "Canadian woman" in her sequel. She is very up to date and well researched on what is happening with the CCSVI research.
S


That sounds great, then, Sheri... so I assume that Avis would be sending someone in to get these facts? But is that follow-up story a ways down the road? I think that all TiMSers would be relieved to hear about confirmation that another place is getting CCSVI occurrence in MS patients at rates similar to those that Zamboni was getting.
...Ted


Hi Ted
is an investigative reporter so she'd have as much info as anyone. I don't know how much statistical data she is logging - not sure what her job entails on this particular story. I also don't know when her exact plans are for a sequel. Whenever I have a doctor's appointment I let her know. Right now I am waiting to hear about my appointment with Dr McDonald.
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Postby dunkempt » Thu Jan 07, 2010 9:41 am

Zamboni and Simka to be in Canada

On another thread (CCSVI Education Program at USF in Tampa, FL 2/18/10), GinR quotes:

Research into Blood Flow in the Brain and Venous Insufficiency, or CCSVI, in MS is a new and potentially interesting area in MS research. Dr. Krolczyk will be traveling to Canada in early February to meet with Dr.'s Zamboni and Haacke and other experts to learn more about this new data. We will be holding an education program to discuss this research on February 18th at 6pm at the Byrd Center. Since this is an area of great interest, we expect a high attendance. We respectfully request you limit the number in your party to two. Please RSVP by February 3rd to reserve your seat. Please RSVP via email at rsoares@health.usf.edu or call 813-396-9656 813-396-9656 and leave your name and phone number. Thank you and we hope to see you there!


This suggests, um, that Dr. Zamboni will be in Canada in February for some kind of conference with Dr. Haacke. And we know already that Dr Simka is due to be in Vancouver in February to train people for the UBC study too.

Anybody know about these events, and whether they might be related, so that we can use it to perhaps lite a match under the powers that be?

Shiraz, do you know if Avis Favaro is on this already?

-d
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Postby annad » Thu Jan 07, 2010 9:49 am

Dunkempt
where did you get this from? Interesting. Do you know where the Byrd Center is?
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Postby annad » Thu Jan 07, 2010 9:54 am

Having re-read your quote, I realize the meeting at the Byrd Center is in Florida and they'll meet there to discuss their meeting here. I think. lol
Do we know where they'll be in Canada?
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Postby dunkempt » Thu Jan 07, 2010 10:03 am

where did you get this from? Interesting. Do you know where the Byrd Center is?


I just know what I read here today, at that thread (CCSVI Education Program at USF in Tampa, FL 2/18/10), and then I remembered Billmeik on the False Creek thread had mentioned email from Simka saying he was going to be at UBC.

I only know what I read in those posts - the Byrd Center is in Tampa. Probably harder to get to than Poland for me....

-d
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Postby markus77 » Thu Jan 07, 2010 10:34 am

wouldn't some time of demonstration, advertisement, commercial on CCSVI at the very same time as the olympics broadcasts be amazing or have some type of march that interupts the flow of the games......
Last edited by markus77 on Thu Jan 07, 2010 3:25 pm, edited 1 time in total.
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Postby Shiraz » Thu Jan 07, 2010 2:40 pm

dunkempt wrote:Zamboni and Simka to be in Canada

On another thread (CCSVI Education Program at USF in Tampa, FL 2/18/10), GinR quotes:

Research into Blood Flow in the Brain and Venous Insufficiency, or CCSVI, in MS is a new and potentially interesting area in MS research. Dr. Krolczyk will be traveling to Canada in early February to meet with Dr.'s Zamboni and Haacke and other experts to learn more about this new data. We will be holding an education program to discuss this research on February 18th at 6pm at the Byrd Center. Since this is an area of great interest, we expect a high attendance. We respectfully request you limit the number in your party to two. Please RSVP by February 3rd to reserve your seat. Please RSVP via email at rsoares@health.usf.edu or call 813-396-9656 813-396-9656 and leave your name and phone number. Thank you and we hope to see you there!


This suggests, um, that Dr. Zamboni will be in Canada in February for some kind of conference with Dr. Haacke. And we know already that Dr Simka is due to be in Vancouver in February to train people for the UBC study too.

Anybody know about these events, and whether they might be related, so that we can use it to perhaps lite a match under the powers that be?

Shiraz, do you know if Avis Favaro is on this already?

-d


I copy and pasted the info .and will let you know when I hear back. By the way, I got my appointment today to see vascular surgeon He's at the clinic where I got my doppler - so I guess there is something to talk about. I'll keep everyone posted!
Shiraz
Last edited by Shiraz on Fri Jan 29, 2010 1:52 pm, edited 1 time in total.
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