Treatment Centers Can Be Found - Get Working!

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

Postby jay123 » Wed Jan 20, 2010 6:47 am

Cure, don't think the society is the one to send it to, no one in an administrative position is going to 'take a chance'. I would concentrate on individual hospitals (preferably teaching ones) and private vascular surgeon groups. Also, if you now of any large stroke clinics give them a shot - I know here in the US they are looking at it very closely as they do have experience working in the necks of people.
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Postby girlgeek33 » Wed Jan 20, 2010 6:48 am

This is great. I'm going to spread the word and post this in my group....
Thanks!
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Postby Cece » Wed Jan 20, 2010 6:14 pm

Ok this is interesting. Over on another site, someone is posting that they had the liberation procedure performed 1/8/2010 at lancaster general health PA by Dr. David A. Winand. I did a search here on lancaster and winand but didn't find either....

It's in post number 53: http://socioecohistory.wordpress.com/2009/11/23/scientific-breakthrough-liberation-treatment-for-multiple-sclerosis/
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Postby jay123 » Wed Jan 20, 2010 7:17 pm

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Postby CureOrBust » Wed Jan 20, 2010 11:44 pm

jay123 wrote:Cure, don't think the society is the one to send it to, no one in an administrative position is going to 'take a chance'. I would concentrate on individual hospitals (preferably teaching ones) and private vascular surgeon groups. Also, if you now of any large stroke clinics give them a shot - I know here in the US they are looking at it very closely as they do have experience working in the necks of people.
AHhh... the society was not that big. their website looked pretty amateurish, and the email address was to an actual interventional radiologist; who looked like he may of been running the web site from his garage, because he drew the short straw.
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Postby MurielC » Fri Jan 22, 2010 3:41 am

GetActive I like your style.

I am trying to get the ball rolling for my brother who suffers from MS, in Ireland, and trying to see, if presented with the right information, are doctors willing to do these tests and come on board with this. This information is very useful.
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Postby jimmylegs » Mon Jan 25, 2010 5:30 am

oz, i can see that your link points to another site, but it might be helpful to new TIMS visitors, to add it to the big names sticky... if it's not already there...
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Postby jr5646 » Mon Jan 25, 2010 1:27 pm




No dice on this one... I called today. Why are some receptionist's so harsh??? Anyway she started taking down my info. until I brought up ccsvi. I guess they are not going to test/treat it. She knew exactly what I was talking about so maybe they were at one point?? She didn't elaborate, and I didn't ask any further questions because of her tone...

Oh well, on to the next one... I have an appt. with a local vascular surgeon tomorrow... I'll post how it goes.
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Postby girlgeek33 » Mon Jan 25, 2010 1:32 pm

@jr5646, where are you? in PA?
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Possible Contacts

Postby Squeakycat » Mon Jan 25, 2010 3:52 pm

These are the co-authors with Dr. Zamboni of the consensus document on the Diagnosis and treatment of venous malformations of the International uni0n of Phlebology.

They are all vascular surgeons and while they may not directly be interested in doing diagnostics or surgery, they are likely good starting points for this. I've only looked up the contract information for those in the US.
------------------------------------
Division of Vascular Surgery, Department of Surgery, Center for Vein, Lymphatics, and Vascular Malformation, Georgetown University School of Medicine, Washington, DC, USA;

Byung-Boong Lee, MD. PhD, FACS
Georgetown University Hospital
3800 Reservoir Rd., NW, 4 PHC Building
Washington, DC 20007
Phone (202) 444-2255


James Laredo, MD
Address Georgetown University Hospital, Fourth Floor, PHC
3800 Reservoir, NW
Washington, DC 20007
Phone (202) 444-2255
---------------------------------------
John Bergan, MD

He is a vascular sugeon, practicing primarily at the Scripps Memorial Hospital – La Jolla, and a Professor of Surgery at the University of California, San Diego. He limits his current practice to the diagnosis and treatment of vein problems.

Phone (858) 550-0330
---------------------------------------
Peter Gloviczki, MD

Division of Vascular and Endovascular Surgery, Department of Surgery, Mayo Clinic College of Medicine, Director, Gonda Vascular Center, Mayo Clinic, Rochester, MN, USA;

The Mayo Clinic Gonda Vascular Center is devoted to providing state-of-the-art diagnosis and treatment in a compassionate environment for patients with vascular diseases.

gloviczki.peter@mayo.edu

507-284-2511
-----------------------------
Loose D. A

Department for Vascular Surgery, European Centre for the Diagnosis and Treatment of Vascular Malformations, Die Facharztklinik Hamburg, Hamburg, Germany;
-----------------------------
Mattassi R.
Department of Vascular Surgery, Stefan Belov Center for Vascular Malformation, G. Salvini Hospital, Garbagnate Milanese, Milan, Italy;
-----------------------------
Parsi K.
University of New South Wales, Australia and Australian College of Phlebology, Sydney, Australia;

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Postby jr5646 » Mon Jan 25, 2010 6:18 pm

girlgeek33 wrote:@jr5646, where are you? in PA?


Yes, I'm in PA - near Pittsburgh... about 3 1/2 hours from lancaster (Dr. David A. Winand).

I called a local vasc doc in my area and tried to talk to the recp. about ccsvi to get an appt. (she had never heard of it, of course) - they called me back about a week later and said that the Dr. was interested in seeing me (first time that's ever happened). So I'm not sure what to make of it??? We'll see how it goes tomorrow and not getting my hopes up as I can't handle the added stress.

I also have a list of IR's from UPMC (Univ. of Pitt Medical Center) that I'll hit next. Can't give up !!!
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Postby jay123 » Mon Jan 25, 2010 6:28 pm

I have heard such great things about UPMC that I did email them info but never heard back. The more people sending them stuff the better though!

I know they have a great concussion center there, do they have a stroke clinic? If they do send them info too.
Good luck.
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Postby Cece » Mon Jan 25, 2010 8:50 pm

I feel like I need to baby step my way toward treatment for CCSVI. I've got an appointment with my GP this Thursday to bring up my neck aches, along with the packet of research. I am hoping that this will result in a referral for an MRV and that, with the referral in hand, I'll have more confidence when talking to an IR in the next step.

Btw the above lead on a possible Mayo clinic doctor is much appreciated.
"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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My appt was cancelled

Postby kc » Thu Jan 28, 2010 1:50 pm

I had an appt with dr mehta in albany ny and they called and cancelled my appt for 2/4.
Areceptionist left it on my answering machine. I tried to call back when I got the message but their office was closed.
On my message there was no talk of rescheduling. Maybe he has gotten too many calls and now is weary, I dont know.

All I know now is that I am beyond devastated and am crying.
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Acting locally is working...

Postby pegmegrund » Thu Jan 28, 2010 5:31 pm

kc - I'm sorry to hear your appt. was canceled. Hopefully it can be rescheduled?


I don't post here much, but have been reading this CCSVI forum daily since late October. I seem to be just a bit late in getting on board for treatment - just a bit late for Dr. Dake's study... just a bit late in emailing Dr. Simka.

I've finally 'heard' and taken to to heart the 'act locally' advice, and started a targeted letter writing campaign to Interventional Radiologists and Interventional Neuroradiologists in my area.

I sent my first batch of letters on Monday, and have sent out a handful each day. I'm pleased to report that I've already had an email response from an IR who is 'interested' and he has also talked to the Neurology department at his hospital and they would like to work together to learn more about CCSVI and possibly do the testing for me. Wow! It works.
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