The Sad, Sad State of CCSVI Research in Alberta

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

Postby CCSVIhusband » Mon Dec 27, 2010 10:00 pm

Lyon wrote:
Cece wrote: But I would not press the offer on Lyon when it has been turned down. The decision to pursue treatment is a personal one.
So that there's no mistake, I mentioned a while ago that acting as if CCSVIhusband doesn't exist and not directly responding to him/her is the best way of handling the situation that I can think of and so far I think it's been working very well.

It's obvious that the constant confrontation is upsetting to some people here and I don't blame them. It takes two to tango and I'd just as soon not to be one of the two.

If you don't want to do something, one excuse is as good as another. ~Yiddish Proverb

sounds about right ... :lol:

CCSVI doesn't need him to prove out in the end, I just thought it'd be a little personal experience for him and he could ask some doctors some questions and gain some knowledge first hand ... and he could then have a real experience behind his skepticism, and maybe people would take his posts seriously, instead of with the rancor we continue to see.

As it is, it'll just have to continue to be a lot of hot air blown in no particular direction for whatever reason he's skeptical of CCSVI ...
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Postby sou » Tue Dec 28, 2010 3:33 am

Lyon wrote:Certainly must have come to mind that the fact that everyone with MS tested with venography showing impaired drainage in NO WAY proves that those without MS don't have impaired drainage.

So we are talking for a new disease here. Here is what I was thinking about:

- Let's assume that the occurrence of CCSVI in patients with MS is equal to that of the non-MS population.

- 12/12 friends of mine with MS have been checked and found CCSVI, 100%

- Since the percentages are equal, this means that 100% of my friends without MS will have CCSVI, too. If this happens to all MSer's friends, it makes CCSVI a widespread phenomenon, affecting the entire population.

So CCSVI is normal, just like the heartbeat. However, there must be some unfortunate few that have what we once thought to be "normal venous drainage". I propose that their condition should be called "CCSVH" (CCSV Hypersufficiency) and be treated by stenosing some veins.
Shortest joke: "We may not be able to cure MS but we can manage its symptoms."
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Postby Lyon » Tue Dec 28, 2010 5:19 am

Last edited by Lyon on Thu Jun 23, 2011 6:18 pm, edited 1 time in total.
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Postby Cece » Tue Dec 28, 2010 8:48 am

Lyon wrote: First, I'm not saying that everyone DOES have impaired drainage, I'm just saying that it needs to be researched and not just assumed that anyone who doesn't have MS has substantially better drainage.

I don't have the research handy, but it has been shown in pre-CCSVI research that pwMS have reduced cerebral perfusion.

Also, when we talk about 12/12, it strikes me that 1/1 is what matters most: each of us personally either has it or not. It's 1/1 for me. ;)

Lyon, we are in agreement that further research is needed and it seems that further research is being done. We will learn a lot in this next year and the next five years. I cannot wait until we are standing on terra firma as well; these voyages of discovery have their ups and downs.
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Postby Lyon » Tue Dec 28, 2010 9:17 am

Last edited by Lyon on Thu Jun 23, 2011 6:18 pm, edited 1 time in total.
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Postby Cece » Tue Dec 28, 2010 10:59 am

Interesting times are ahead of us, behind us, and all around us. Never a dull moment when it comes to CCSVI!!

I'm sure the Wisconsin research will be of interest. No singular bit of research is going to conclusively determine this either way. I am waiting to hear more about the "promising new animal models of CCSVI" that will be presented at the ISNVD conference in the spring.
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Would just like to say...

Postby leetz » Tue Dec 28, 2010 2:39 pm

I am 8 day's out of surgery and this has change:

I can jump!

Balance about 60% better!

Bowel and bladder function both improved about 60%

Strength in leg's about 30-40% better!

Judge NOT lest be judged!!!!

CCSVI-is real and has givin this writer so much back already! I feel compelled to say that the IR who did my surgery said to wait and tell on a month to month basis rather than a day to day blessed by the Lord!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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