We're in the Huffington Post...

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

Re: Huffington Post

Postby CureIous » Sat Jan 16, 2010 12:07 am

kenneb9 wrote:It was the Huff Post article that I read that led me to this site. In the mean time we got in the que at Stanford, because of this site I realized that was going to take months. So we went to a local vascular surgeon who is giving us the mri, mrv, doppler utltrasound on Jan 25th. And he will perform surgery soon after the results. So Huffington has helped.


Oh really? Do pray tell! I mean we don't need names and numbers, but that's very very intriguing! It's definitely the Holy Grail that MS'ers are seeking right now, and shows that we don't have to wait for studies if we can finagle our insurance into fixing our veins...

Nice work, welcome too!

Mark
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 Mechanicallyinclined » Sat Jan 16, 2010 10:30 am

I just want a clarification. My Ms clinic recently tried to use the argument with me that there were two dealths related to CCSVI treatments.My understnadiing is this. Holly died after the treatment but it was from other complications. Raddeck is having problems due to a stent migration. That's it right? Not two deaths.
Someone please just briefly update me on what Holly's complication was. I just want to be well informed when I talk to them next.
In the US it seems that you can get access to a vascular specialsit though your family doctor. Or perhaps you are lucky to have an open minded Neuro that is willing to let you explore your options. In Canada, it seems that because I have MS, I can't get access to a vascular specialist unless I have my neuros input. That's the response I got from one vascular surgeon. So if my neuro doesn't buy into this , I'm screwed. I'm still writing letters and carrying forward. I'm not giving up! I know that there are options of getting tested in False Creek or possibly the US, but I want to attract the attention of an interventional radiologist or someone who has an reason to take interest in this. My personal thoughts in my region are that vascular specialists have taken notice of this. I think somehow their hands are being tied up for the short term by our Canadian system. I think once Buffalo results are shown, we'll start to see more of a shift where the Vascular doctors are allowed to do what they do best and at least investigate this personally for themselves.
Sorry I got a bit off the topic we're under.
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Postby babiezuique » Sat Jan 16, 2010 10:36 am

I'm in montreal and yesterday my gp gave me a paper to see an interventional radiologist to have a neck and crane ( this is not the good formulation i know) doppler.
Barbara
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Postby Mechanicallyinclined » Sat Jan 16, 2010 10:55 am

babiezuique wrote:I'm in montreal and yesterday my gp gave me a paper to see an interventional radiologist to have a neck and crane ( this is not the good formulation i know) doppler.
Barbara

I'm glad for you , but find that so frustrating as it is definitly not that easy in Manitoba. I see my GP on an other issue this week . I'll put pressure on him again. I tried that before but said he trusts the specialists. I do too , but I need to see a vasular one not a neuro.
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Postby mangio » Sat Jan 16, 2010 2:15 pm

M.I.
Sent a private post. If any luck please post back via private post. txs.
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