Who are the BIG names in CCSVI ?

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

Postby belsadie » Mon Oct 25, 2010 7:27 am

I recently had a phone conversation with Patricia Coyle at Stony Brook Med Center, LI,NY . She was responding to a letter I wrote to her asking her position on CCSVI testing/treatment. She was adamant about NOT doing anything about this hypothesis until....here it comes....more data is gathered. When I asked her just who will do this testing, if all the neuros refuse to get involved, she [ after calling me "DEAR" ugh] told me I obviously wasn't listening to her and reiterated her call for more data...... I would have to say she was not very receptive....I suggest taking her off your initial list...
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Postby patticake66 » Tue Oct 26, 2010 10:03 am

Dr. Coyle is my neurologist. She is not only well-respected but is on top of her game. If you knew Dr. Coyle the way I do, you would understand that she will not advise you to do anything, take anything or try anything that is not scientifically proven. I understand that MS doesn't wait for science but I feel she has my best interest at heart and knows way better than any of us. And, she still feels CCSVI has a major part in MS. Also, she is one of the many few neuros that will prescribed LDN...thank goodness....please don't take her off the list yet.
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Postby L » Sun Nov 07, 2010 3:25 pm

Is this actually ever updated? Beelen, Al O'Mari, Sinan, Vogl.
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Postby waheed » Thu Nov 18, 2010 6:11 am

Friends,

I got the liberation treatment for CCSVI by Dr. Beelen on 9th of November 2010.

Hospital info as follows:

Dr. Roel Beelen
Department of cardiovascular and thoracic surgery
OLV Hospital
Moorselbaan 164
9300 Aalst
Belgium
Tel: (0032) (0) 53/724599



Thanks,

Waheed
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Postby shaydee5 » Wed Apr 13, 2011 3:50 pm

Not sure if this forum is still being updated, but I had the procedure performed recently by Dr. David Sperling. Here is his information:

Columbia Endovascular
16 East 60th St
Suite 360
New York, NY 10022
212-326-8874

The doctor is great and they have a very friendly, helpful staff.
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Postby tzootsi » Fri Apr 15, 2011 7:22 am

I wanted to share with others from New England that our IR is ok with getting his name out. He has treated several other TIMS'ers.

Dr. Erich Hoffer
Dartmouth Hitchcock Medical Center
Hanover, NH
603 650-7230

Dr, Hoffer is very interested in CCSVI having gone to several conferences. In years past he worked with Dr. Sclafani, and went to school with Dr. Dake.
Dartmouth Hitchcock is a beautiful state of the art medical center located a few minutes off interstates I-89 and I-91.

feel free to PM me if you have any questions.
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Postby Cece » Fri Apr 15, 2011 8:07 am

thank you for updating and adding names! We went through a time period last spring/summer where there was great worry about making these names public. I am glad we are now past the dark ages. 8O
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Postby silvercharged » Fri May 20, 2011 9:33 am

Hello all, we are new to this. does anyone have any info on Dr Edgar Underwood in Birmingham, Al. We have an appointment with him 5/23/11.

Thanks
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Postby Cece » Fri May 20, 2011 11:27 am

That's a new name to me. Glad to hear the procedure is becoming more and more available locally. Let us know how the appt goes! Is it an appointment for the procedure or for consult and ultrasound?
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Postby silvercharged » Tue May 24, 2011 5:37 pm

Cece wrote:That's a new name to me. Glad to hear the procedure is becoming more and more available locally. Let us know how the appt goes! Is it an appointment for the procedure or for consult and ultrasound?


It was a consult and went extremely well. He is very positive and we are moving forward rapidly.

The wife is 53 and this will be 25 years in dealing with MS.
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Postby Cece » Tue May 24, 2011 6:22 pm

silvercharged wrote:It was a consult and went extremely well. He is very positive and we are moving forward rapidly.

The wife is 53 and this will be 25 years in dealing with MS.

Wishing you all the best as you go forward with this.

For me it had been five years since my diagnosis, but I had been dealing with in undiagnosed for a long time before that.
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Postby pollyanna » Fri Jun 17, 2011 7:58 pm

Cecelia can we start this thread up again for things have progressed since last postings.
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are we up and running still?

Postby Sprink » Tue Aug 09, 2011 8:45 am

Is this CCSVI board still up and running?
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Postby Cece » Tue Aug 09, 2011 11:36 am

Yes - please post names of doctors if you have been treated or have heard of them. Things are so different than when this thread began. There was a time when doctors were treating quietly and patients were reluctant to share names publicly.

I was treated by:
Dr. Sal Sclafani of American Access Care in Brooklyn, NY.

I had pre- and post- treatment follow-up care done by:
Dr. Michael Cumming of HCMC hospital in Minneapolis.

Other local Midwest doctors include:
Dr. Snyder of UMMC in Minneapolis.
Dr. Makris of AAC in Chicago.
There are a few other IRs in Chicago as well.
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Postby Cece » Wed Aug 10, 2011 3:39 pm

I am most familiar with Euromedic, with Dr. Simka and Dr. Ludyga, who been involved in CCSVI conferences and producing publications.

Depending on where a patient is coming from, it is good to stay as local as possible. A lot of patients come from Canada, which makes the US a good option.
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