Trying to Get Referral for NYC

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

Trying to Get Referral for NYC

Postby marcstck » Mon May 18, 2009 11:18 am

I just spoke with Angela from Dr. Dake's office, regarding any possible referral he might be able to give me for a doctor to reach out to in New York City. She said she knows that Dr. Dake does have contacts with people here in the Big Apple, and that he'll get back to me sometime either later today or tomorrow. She was extremely gracious and helpful...

As I've said before, I'm not completely convinced of the cause-and-effect link between CCSVI and MS, but an investigational MRV certainly can't do any harm...
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Postby peekaboo » Mon May 18, 2009 11:45 am

That's way cool marc :wink:
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Postby Terry » Mon May 18, 2009 2:44 pm

Marc,
There were 4 or 5 docs from Stonybrook in some info that Marie (I think) posted. Labropoulos is the name I remember. I was impressed that so many docs from there were listed. I think what she posted was a list of docs who had been to the session that Zamboni had. I have MS brain so I cannot remember exactly. I was not on here yesterday, so as I get caught up, I'll look for her post.
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Postby mommasan » Wed May 20, 2009 2:54 pm

Hi Marc,
When you find out can you post it? I'm on Staten Island, and I've been wondering the same thing myself. I've always considered the procedure pretty major. For my own sanity, it is important for me to be very near the doctor doing such an uncommon procedure. Wouldn't want to develop a blood clot or have the vein collapse and try to explain the whole thing to a burnt out intern at a local hospital.

sandy
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Postby marcstck » Wed May 20, 2009 9:26 pm

I spoke to Dr. Dake's office today, and they told me that he didn't have anybody to refer me to. They asked if I'd like to speak to him, and I said I would. He's supposed to call me tomorrow.

I'm thinking that he might at least point me to an appropriate hospital to approach here in New York. I'm also thinking that I might ask him to talk to my PCP (who's quite open-minded) who could then order the MRV...

I will post when I find out more info...
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Postby marcstck » Wed May 20, 2009 9:28 pm

Terry wrote:Marc,
There were 4 or 5 docs from Stonybrook in some info that Marie (I think) posted. Labropoulos is the name I remember. I was impressed that so many docs from there were listed. I think what she posted was a list of docs who had been to the session that Zamboni had. I have MS brain so I cannot remember exactly. I was not on here yesterday, so as I get caught up, I'll look for her post.


Thanks. StonyBrook is actually a bit of a haul from Manhattan, and there are so many world-class facilities here in the city that I'm thinking there must be an appropriate place to get this done close by...
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Postby peekaboo » Thu May 21, 2009 5:38 am

marc ---here is a link for medical schools by state...there are a lot in NY assuming many in the big apple..I suggest you find the ones nearest you and google them and find the vascular dept and so forth...hopefully you may find the person you need :D

<shortened url>

I couldn't get it (the link) to shorten :oops:
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Postby HUTTO » Thu May 21, 2009 10:29 am

peekaboo. do we just need to find a vascular neurosurgeon? thats about the only thing i can find at vanderbilt.
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Postby cheerleader » Thu May 21, 2009 10:44 am

Here's the folks I'd recommend at NYU
http://www.med.nyu.edu/interventionalrad/

Here are some docs in the Nashville area:
Interventional Radiologists

The specialty you need to look for are interventional radiologists . Doctors who use MRV and endovascular techniques to view the veins, and repair them if necessary.

I'm not sure Dr. Dake feels comfortable making recommendations, since he's out on a limb of his own looking into this.

We need patients to make inquiries to universities that have interventional radiology departments. Anything "neuro" will involve the brain, and not look at the venous routes draining the brain and spine.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby peekaboo » Thu May 21, 2009 2:57 pm

Hutto - If you can't find an interventional Radiologist...go for the closet thing you can find in disciplines.

Good Luck

H
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Postby peekaboo » Thu May 21, 2009 3:40 pm

Another hint...Dr Dake is listed at Stanford in the

Department of Cardiothoracic Surgery
Falk Cardiovascular Research Center
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Postby Terry » Thu May 21, 2009 6:20 pm

StonyBrook is actually a bit of a haul from Manhattan


Lol, Marc. I live in the center of the Cincinnati area. If the address says Cincinnati, and I have a half hour, I can be there.
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Postby HUTTO » Fri May 22, 2009 7:26 am

thanks for all the replies..i called and left a msg with a nurse. she called back and left me her email so im going to send a email with everything and see if they do it or they can point me in the right direction..will keep everyone posted. thanks again.
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Postby marcstck » Fri May 22, 2009 2:42 pm

I spoke with Dr. Dake today. As everybody else has commented, he is exceptionally gracious and spent about 10 minutes on the phone with me.

He said he really didn't have anybody in New York City that he could refer me to, because this line of treatment is so far out "on the edge".

He recommended that I ask my PCP to order me a venous CT scan, from the head to the diaphragm. He explained that getting proper results from MRV is more of an art than a science, and that CT scans are more mechanical in their application.

He told me to send him the CT scan results on a disk when I get them.

So, next step will be to talk to my primary care physician about all of this. Luckily, my wife is seeing him on Tuesday, so I'll send her with the proper research articles for him to review. Any suggestions on which articles might be the most beneficial?
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Postby cheerleader » Fri May 22, 2009 3:06 pm

Marc-
Glad you got to speak with him directly. This is a good way to go...you don't have to travel to be tested, and he can consult with you. I'm so glad this can be an option for you. I'd suggest you print out the following to bring to the appointment:
http://jnnp.bmj.com/cgi/rapidpdf/jnnp.2008.157164v1

It's the 12/08 Zamboni paper outlining the venous blockage found in all 65 MS patients tested with dopplers and venograms. The CT scan from your head to diaphragm will cover both your two internal jugulars and your singular azygos veins. This is where the blockage is showing in every MS patient tested so far (over 120 now) A CT scan will capture it all...Dr. Dake said the same thing to us, with the MRVs, it's easier to miss blockage if the dye isn't placed in the right location.
wishing you good luck getting the CT scans scheduled-
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dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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