Loobie Doobie do's blog is updated

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

Loobie Doobie do's blog is updated

Postby Loobie » Sat Jul 24, 2010 1:34 pm

Updated my blog today with what we found at Stanford. More later, I have to get to a wedding reception!
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Postby ozarkcanoer » Sat Jul 24, 2010 3:35 pm

Yes, hope is just what we need the most. Right now I am wearing a t-shirt that says CCSVI and HOPE and MS among many other words. I haven't had the procedure but knowing about CCSVI and the research and the possibilities gives me hope. Loobie, with Dr Dake and all his buddies cogitating over your problem, maybe that will give you an extra dose of hope !!! Thanks for your blog.

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Postby Katie41 » Sat Jul 24, 2010 3:40 pm

Great blog! Thanks for all the info. Great minds collaborating hopefully will bring new successful treatment for you.
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Postby Trish317 » Sat Jul 24, 2010 5:26 pm

That made me laugh and made me cry. Thank you for your honest account of what's happening with you, Loobie. I pray that the doctors get the answers for you. My darling man was diagnosed with PPMS in 2007, and is just starting the journey to see if there are answers for him.
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Postby eric593 » Sat Jul 24, 2010 6:18 pm

Lew, you talked about the doc talking to others about whether to stent this narrowed area.

You didn't mention this, but why don't you just try angioplasty to see if it helps first? You didn't mention that it had ever been ballooned at all.
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Postby Loobie » Sun Jul 25, 2010 5:01 am

Good question for sure about angio in this case. Since it is stretched (think of a thin piece of tubing being pulled until the inner diameter is shrunk), it is not a stenosis. So ballooning it would only bulge it out and it would go right back. The only way to keep this situation open, if it even turns out it needs to be, is to stent. Then I'd just have a 'permanent bulge'. He's also looking to make sure what it's stretched around doesn't have nerves between it so as not to have a pinched nerve. I learned that lesson once with my shoulder!
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