90 Minute Webb Forum into CCSVI

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

Postby charlie656 » Wed Apr 14, 2010 6:15 am

I will probably end up checking every hour.

Hope they have something good to say
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Postby MarkW » Wed Apr 14, 2010 8:29 am

Still time to register and watch the webinar............MarkW
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 11 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html
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Postby Mutley » Wed Apr 14, 2010 8:37 am

Thought this would be at 17:00 UK time?
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby LR1234 » Wed Apr 14, 2010 9:09 am

18:00 start time I think???
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Postby euphoniaa » Wed Apr 14, 2010 9:14 am

The World Clock - Time Zones
http://www.timeanddate.com/worldclock/
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
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Postby cheerleader » Wed Apr 14, 2010 9:15 am

on now....
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby LR1234 » Wed Apr 14, 2010 10:52 am

Heard it and watched the slides (couldn't see the Dr's though) computer too old:(

I think they made it very clear that they were not trying to threaten neurologists positions and that they were encouraging trials and working alongside neuros. Hopefully things will start moving forward and we can get the multi centre trials soon.
Still not sure if I like the idea of "sham" surgeries.
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Miller is a Tool

Postby FlashHack » Wed Apr 14, 2010 11:02 am

Dr. Miller clearly did not enjoy being there. Nice that he used the first 5 minutes to talk up drug therapies. The best part was Zamboni's discussion of the in-process and upcoming research. Second best part was when he replied to that dorktor in the audience regarding the role of iron in the disease process. First time I have seen Dr. Z visibly irritated (but quite controlled) by a dorktor's obvious ignorance.
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Postby Villagemaid » Wed Apr 14, 2010 11:05 am

I caught that too......Zamboni was very controlled, eh?..but let it be known that he was irked...ha ha ha...love it!!!
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby Villagemaid » Wed Apr 14, 2010 11:07 am

I am still SO confused.

I am going to False Creek to have the MRV Doppler and Doppler.......unsure if I need both now...maybe just the MRV?

And after that should I seek out an Intraventional Rediologist? Is the way to have the procedure done within the (paid) medical system - only after I pay for the test first.....

Anyone have any ideas?
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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Postby PCakes » Wed Apr 14, 2010 11:12 am

adding to your confusion... my FCSC MRV was inconclusive.. doppler was positive... i think that diagnostics are somewhat dependent on the cause of the problem. stenosis/ valve/ membrane
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Postby MaggieMae » Wed Apr 14, 2010 11:15 am

It was very obvious on both issues - Dr. Miller on the drug therapies and Dr. Zamboni when asked the question (regarding iron) by the doctor in the audience. I also was happy to hear that one reporter asked for an explanation of why there was a difference in the number of patients that Dr. Zamboni found with CCSVI and what the the Buffalo study found. Dr. Zavadinov seemed happy that he was asked. I'm sure further studies at Buffalo will show a higher correlation between CCSVI and MS.
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Postby FlashHack » Wed Apr 14, 2010 11:23 am

Villagemaid wrote:I am still SO confused.

I am going to False Creek to have the MRV Doppler and Doppler.......unsure if I need both now...maybe just the MRV?

And after that should I seek out an Intraventional Rediologist? Is the way to have the procedure done within the (paid) medical system - only after I pay for the test first.....

Anyone have any ideas?


This was referred to briefly. Properly done doppler by a properly trained tech is much more diagnostic than an MRV (and 5 time cheaper!). Dr. Zivadinov discussed that Dr. Zamboni has helped create a better doppler for diagnosing CCSVI. A study published April 1st compared MRV to Doppler using Catheter Venography to determine the accuracy of each and found doppler to have much fewer false negatives.
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Postby Villagemaid » Wed Apr 14, 2010 11:30 am

I am not confused anymore. :P

I will get the testing done at False Creek. I will take the results back to my Doctor and get referred to a Vascular Surgeon. Then they can do the venography and ballooning.

I will forward all results and reports to Zamboni/Zivadinov/Simka/other researchers.
35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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False Creek

Postby FlashHack » Wed Apr 14, 2010 11:32 am

Let's hope that they have to rename the clinic "Positive Creek"! :wink:
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