CCSVI treatment available in the U.S.!

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

CCSVI treatment available in the U.S.!

Postby Rokkit » Wed May 12, 2010 8:13 am

Thanks to ikulo for finding the original excellent article from these folks about CCSVI, but here's the bombshell:
At the present time, we are offering both diagnostic and endovascular treatment for CCSVI (Liberation Treatment) in patients with an established diagnosis of symptomatic multiple sclerosis who reside both within and outside of the Albany, New York area.

http://www.communitycare.com/Practices/ ... /CCSVI.asp
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Postby coin » Wed May 12, 2010 8:25 am

EXCELLENT!!!
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Postby ikulo » Wed May 12, 2010 8:48 am

woops, didn't even see that! :oops: Great news though.

Proper credit should be given to the CCSVI facebook group, where I first read about this.

http://www.facebook.com/#!/pages/CCSVI-in-Multiple-Sclerosis/110796282297?ref=ts
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Postby newfie-girl » Wed May 12, 2010 9:42 am

WHATS THE SCOOP :P :P


great news, a few questions thou that come to mind, as this clinic just seems to just recently started CCSVI testing and treattment? Are they IRB approved? Is Dr. Mehta's involved , as he also is located in Albany, NY.

Would love to hear from people who have had treatments there, or are familiar with the reputation/quality of this clinic. I didn't reconize any of the docs names on their website.

Any information at all would be greatly appreciated :)
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Postby cheerleader » Wed May 12, 2010 9:43 am

We're being careful on FB to only link to doctors once they have approval to treat. Learned that the hard way. Come on over and check us out. Click on the blue letters in my signature. It's an incredibly diverse international community, and the wall moves really fast every day. But there's lots there.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Rokkit » Wed May 12, 2010 9:51 am

cheerleader wrote:We're being careful on FB to only link to doctors once they have approval to treat. Learned that the hard way.

Are you saying they're not approved to treat? Because their website says "At the present time, we are offering both diagnostic and endovascular treatment for CCSVI (Liberation Treatment)..."
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Postby cheerleader » Wed May 12, 2010 9:53 am

[removed-
Last edited by cheerleader on Wed May 12, 2010 1:35 pm, edited 1 time in total.
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Rokkit » Wed May 12, 2010 10:02 am

cheerleader wrote:No, the opposite, Rokkit. They are approved. That's why they are linked. We use doctors initials and PM each other if not approved. We link to actual sites if they are.

Ohhhhh, I see. Newfie-girl's post snuck in before yours so I didn't realize you were responding to ikulo's give credit where it's due post.

Anyway, I'm thrilled something is happening in the U.S. And it's public. No secret handshakes. We've simply got to get another body of knowledge going. Right now, Simka is the only one developing any firsthand knowledge to speak of. Hopefully the Kuwaiti's will soon be contributing a lot as well.
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Postby bmk1234 » Wed May 12, 2010 10:08 am

A couple of questions.
Is Mr. Mehta associated with these Doctors or the facility? I notice it is in Albany.

Are they associated with Dr. Sclafani?

Ultimately I'm trying to find out if they are trading notes, learning from each other.

I just got off the phone with Interventional Care and they stated they have performed about 12 Liberation Procedures and have another 20 scheduled.

They also said the phone is very busy!!

They also stated they meet next week for IRB approval.

Thanks to all who helped get this done.
Blaine
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Postby BooBear » Wed May 12, 2010 10:12 am

This is so wonderful!!! I have already called and left a message to schedule an appointment. Thank you all for sharing this!!!!

AMEN
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Postby ndwannabe » Wed May 12, 2010 10:16 am

Oh my.

I wonder how long is the waiting list? What kind of insurance do they take?

If anybody knows of top of their head please post, if not I guess I can call them.

If this can be faster / cheaper than Poland... I am trying to calculate the possibilities in my holly brain.
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Postby Greenfields » Wed May 12, 2010 10:42 am

Anyone know the cost?
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Postby ndwannabe » Wed May 12, 2010 10:44 am

Called them just now.

The front desk does not give any information - not about the waiting list nor about the cost.

Got my "demographic information" collected.

Was promised to be contacted by a doctor in a few days.

Not canceling Poland quite yet.
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Postby bestadmom » Wed May 12, 2010 10:51 am

They are not related to Dr. Mehta and started treating CCSVI late last year. Dr. Siskin was a student of Dr. Sclafani but they are not working in conjunction with eachother.
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Postby newfie-girl » Wed May 12, 2010 10:57 am

Don't want to sound negative here, but they don'y meet til next week for IRB approval, aren't they " jumping the gun", so many of our good dr's have been stopped by IRB, SO DOES THIS MEAN, they are considering giving their ok/permission to others to move ahead with CCSVI, and continuie treating or are they assuming they will get IRB approval :? , any way I only hope this is the beginning and thiings start moving from here, as there has been so many disappointments thus far.
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