Neurology Now

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

Neurology Now

Postby Lyon » Thu Aug 12, 2010 3:00 pm

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Postby PCakes » Thu Aug 12, 2010 4:26 pm

thanks Lyon.. new one for me.. have to admit it seems to have a little less emPHAsis on the negative.. erring to the side of caution but reined in on the 'junk science' shots.. and! they included Dr Zamboni's call out for 'compassionate' treatment! hmmm
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Postby Lyon » Thu Aug 12, 2010 4:40 pm

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Postby fogdweller » Thu Aug 12, 2010 4:43 pm

Very interesting, and not nearly as negative as virtually everything in the neurology arena so far. I found myself being very sceptical and hostile, just because I have developed a hostile attitude toward neuros as a result of their non-sciedntific and puzzling negative approach to something that ought to spark real excitment in the community of doctors treating MS. This article was not really negative at all, but was exceedingly cautionary. The neuros are not hearly as cautionary about using drugs, even drugs with horific side effects and very little proven benefit.

One comment I take exception to. Dr Corboy“Claims of improvement are based only on comparison to patients themselves prior to the procedures,” he says. “No one would accept this as evidence of a treatment effect in MS.” I think this is evidence, just very weak and certainly not conclusive evidence, but when given the number and nature of improvements, especially as wittnessed by many treating physicians, it is intriguing evidence to be sure.
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Postby Lyon » Thu Aug 12, 2010 5:10 pm

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Postby scorpion » Thu Aug 12, 2010 5:36 pm

Honestly Lyon I think that 99.9% of medical providers have not even heard of CCSVI.We have spent so much time on this forum that I think we have become CCSVI obsessed. :wink:
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Postby Lyon » Thu Aug 12, 2010 5:51 pm

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Postby Loobie » Fri Aug 13, 2010 7:51 am

You ought to see it on Facebook. I think there are over 15K signed up on the page. Lots and lots of energy on that page. You log off and log back on 10 minutes later and sometimes you have to scroll down majorly to find what you just wrote!
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Postby CureIous » Fri Aug 13, 2010 9:12 am

scorpion wrote:Honestly Lyon I think that 99.9% of medical providers have not even heard of CCSVI.We have spent so much time on this forum that I think we have become CCSVI obsessed. :wink:


Yes, it's easy to get the sense that the entire medical community and MS world has been thrust headlong into the ccsvi discussion. Nothing could be further from the truth. Considering there's over 500,000+ (I'm sure it's much higher) in the US alone, multiple thousands of hits views and/or member numbers pales in comparison, keep in mind also that this and other venues are worldwide, which waters the numbers down even further. (Not to mention that a goodly number of people don't even use the internet on a regular basis) That being said, when I had occasion to visit the ICU unit last week (not as a patient), the nurse I queried had indeed heard of CCSVI..
I never waste oxygen when going into a hospital, such fertile ground... ;)
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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap
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Postby 10yearsandstillkicken » Fri Aug 13, 2010 12:31 pm

I met with a neurointerventional radiologist a couple weeks ago. I used narrowed veins in place of ccsvi but he had not heard of any of this. I mentioned Dr. Dake at Stanford and he perked up. It is fair to say that we have been discussing this in a bubble. Word is spreading but slowly.
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Postby eyebrow » Fri Aug 13, 2010 12:46 pm

I mentioned my interest in CCSVI to my physiotherapist who works as part of the ms team with my neurologist. The reply was that they had discussed it as a 'team' and dismissed it until further research had been done. I therefore did not discuss it with my neurologist 'cos I don't want to be advised against it (- this would invalidate travel insurance). A feew neurologists at least thinking about it might influence others to take a second look.
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