CCSVI treatment available in the U.S.!

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

Postby SofiaK » Thu Oct 14, 2010 11:46 am

aam
Last edited by SofiaK on Fri Oct 15, 2010 4:04 pm, edited 1 time in total.
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Postby brave » Thu Oct 14, 2010 11:54 am

Not again........
I was in Dr Dake's calnder for one week after Stanford did shut down the procedures and now scheduled with Dr Siskin for Nov 24, here we go again

I hope that's not the case.
:(
brave
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Postby erinc14 » Thu Oct 14, 2010 1:10 pm

this is very upsetting . i can't travel far :(
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Postby javabean » Thu Oct 14, 2010 2:14 pm

When I spoke with somoeone from the clinic I asked if the procedure was in jeopardy of being stopped, like Dr. Dake's. I don't exactly remember the reasoning/wording, but I do remember being told it wasn't an issue. I believe because it's a private clinic. Like I said, not 100% sure, but I did ask and felt reassured. Hope that helps.
Last edited by javabean on Thu Oct 14, 2010 3:07 pm, edited 1 time in total.
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FDA with Dr Siskin

Postby lazydean » Thu Oct 14, 2010 2:29 pm

I thought the FDA was food and drug.
Gadolinium is the only thing I could that might involve the FDA.

DARN DARN DARN..................I have an appointment in min November!
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Postby CCSVIhusband » Thu Oct 14, 2010 2:33 pm

You ALL do realize this doctor works on other things than CCSVI? It could just be he has a meeting that day with the FDA about another thing ... (or the entire hospital could have meetings with the FDA) ...

Methinks you're working yourselves up over nothing ...
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az treatment

Postby zinamaria » Thu Oct 14, 2010 3:16 pm

Hello all,

Does anyone know any more about the treatment in Az? How many patients have they treated? What is the cost? I will email Heidi but thought to see here first if there is more info available.
Also, there is another post here about the facility in Phoenix, are these the same place?
Anyone know anything about Dr. Michael Lavor?

Help.

zina
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Postby SofiaK » Thu Oct 14, 2010 6:22 pm

2[quote][/quote]
Last edited by SofiaK on Fri Oct 15, 2010 4:02 pm, edited 4 times in total.
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Postby msgator » Thu Oct 14, 2010 6:45 pm

going for treatment in Rhode Island tomorrow. So far all my interaction has been very positive. Will post more when completed.

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby Cece » Thu Oct 14, 2010 8:03 pm

SofiaK wrote:...

FDA also governs stents. It's just the stents that I can think of that the FDA might intervene.

I was hit with airline cancellation fees last spring, but was spared hotel fees at least. Hope he reschedules you soon.
Last edited by Cece on Sun Oct 17, 2010 2:28 pm, edited 1 time in total.
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Postby brave » Sat Oct 16, 2010 2:25 am

Hi
does anyone knows the follow up schedule for procedures done in Albany?
after how long you should go bback there and how many times?

Thanks,
brave
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Postby javabean » Sat Oct 16, 2010 6:12 am

Brave,

This link is from Community Care in the FAQ section. Question 13 talks about follow up.

http://www.communitycare.com/Practices/ ... VI_FAQ.asp
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Postby fogdweller » Sat Oct 16, 2010 9:04 am

Cece wrote:
SofiaK wrote:The ONLY reason that I posted the not-so-good news is that Dr Siskin 's office re-scheduled my appointment at his clinic as he will be going and talking about MS to FDA. I was hoping that others would avoid hotel late cancellation fees.

I really hoped someone might know something more. I'll post when I learn more. Maybe drugs are being made for CCSVI??

FDA also governs stents. It's just the stents that I can think of that the FDA might intervene.


As long as the stents are approved for some use, e.g. cardiac or billiary stents, then how the dr. uses them is generally not an FDA issue. However they may be approving studies and their expert panels may want to know more in order to evluate the studies,
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Postby JCB » Sun Oct 17, 2010 8:39 am

My discharge papers said Doppler at 3, 6 and nine months. I am having my followup locally.
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Postby Meg8907 » Wed Oct 20, 2010 6:56 am

Anyone interested in learning more about CCSVI, PLEASE consider attending the Center for Vascular Awareness Roundtable meeting in Albany NY on 11/10/2010.

Dr. Michael Lenihan, Dr. Michael Dake, Dr. E. Mark Haacke, Dr. Manish Mehta, and patients who have received CCSVI treatment will be speaking. FREE TO THE PUBLIC!

This is a very important meeting and will be informative! All are invited, patients, healthcare workers, and anyone who may want to learn more about CCSVI are encouraged to attend!

Please visit www.vaware.org and contact Sharon Cillis at 518-452-1048. Also, if you are interested in attending (or know someone who is) please rsvp at rsvp@vaware.org.

Thanks!!
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