Anywhere in MidAmerica?

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

Anywhere in MidAmerica?

Postby MariaChristo » Sat Aug 14, 2010 8:59 pm

I live in MO and I was so excited to see "Steven R. Brenner, MD, Associate Professor Department of Neurology & Psychiatry, St Louis University School of Medicine " in the topic "whos who in CCSVI"
I thought for sure that would pan out to be something great! When I called around in St. louis all I got was a run around and a stack of unreturned calls. It seems like alot more people in the US are getting treated!

My question is: Has anyone heard of anything going on around Missouri about CCSVI??

Anything would help, Thanks!
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Postby SaintLouis » Sun Aug 15, 2010 9:36 am

The docs at Washington University/St. Louis who could potentially help are "sitting it out" until more evidence comes in. They're not touching this outside of a study, for which they did apply for a grant but were not chosen.

I have had zero luck finding anyone in Missouri who is interested in CCSVI enough to learn about it and then test/treat.
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Postby Cece » Sun Aug 15, 2010 12:01 pm

The Mayo clinic in MN is actively discouraging IRs from treating this. We've had two reports of an interested IR then contacting the Mayo, getting told this is not worth pursuing, and then not pursuing it. :(
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Postby 1hunter » Sun Aug 15, 2010 4:21 pm

I went to the Mayo Clinic, when i asked about CCSVI, they said they would be willing to "jump in" if it proves to be a viable treatment. I was disappointed to hear that answer.. I thought Mayo was cutting edge, they should be helping to prove it is a viable treatment, not sitting back waiting....
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Postby IHateMS » Sun Aug 15, 2010 4:37 pm

1hunter wrote:...... I thought Mayo was cutting edge, they should be helping to prove it is a viable treatment, not sitting back waiting....


i agree
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Postby nellie » Mon Aug 16, 2010 6:56 am

I, also, contacted Mayo & one Dr. who was an interventional radiologist emailed back & said he would have his co worker contact me as it was more his field. Later I rcvd. a reply from the 1st Dr. who emailed a copy of the 2 negative instances from ccsvi. They will not do anything till trials have proven it. Also, they discouraged the 2 prospects I had here in Mn. that were on the fence. I've tried so hard here and have become so frustrated with the responses. Such a conservative state and Mayo is certainly a driving facotr here.
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Postby Blaze » Tue Aug 17, 2010 7:20 am

It's not Missouri, but here's a link to information from another website about someone who was treated recently in Indiana.

http://ccsvi-ms.ning.com/profiles/blogs ... 5297960%3A

This says it took about a week from contact to testing and treatment. The name of the physician is not given nor is the name of the facility or cost. It may be a start however. Unfortunately, it appears the Indiana doc has not had contact with other physicians doing treatment.

Good Luck.
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thanks

Postby MariaChristo » Tue Aug 17, 2010 4:06 pm

thanks so much for that link! it did help! I hope i can get some money together and make a visit up there.


yes, it seems that midamerica is going to be some of the last to embrace CCSVI. They seem to be just a bit more stubborn then the rest! (well, we MS'ers are too! so poo on them! lol)
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