This Is MS Multiple Sclerosis Community: Knowledge & Support

At the end of the SIR response to the FDA letter: In other words, interventional radiologists are not cowboys, they're highly qualified specialists who perform balloon angioplasty on a daily basis.
Though determining when jugular venoplasty is appropriately indicated is what's at question.
I would trust my IR over my neurologist to interpret a venogram! I would also trust myself, at this point, to the extent that a layman can achieve.

In the FDA letter, with the emphasis on adverse effects, it would have been more balanced to also mention the safety studies that we have seen.
Dr. Simka's safety study - http://www.youtube.com/watch?v=1czmJBLKhEg
Dr. Mandato's safety study - http://tinyurl.com/6jbpuqn

Also from the FDA letter. It is not in our interest to have this procedure labeled as experimental.
I bet this has a bigger impact than what I initially thought. So frustrating.

Some how there needs to be more accurate information put out there in the public realm. People listen to this stuff and we lose support and come off sounding like fanatics. How do we change this?

David1949-I wish there was a " like " button for your post! I agree with you 100%!

It ain't over till it's over.
Yogi Berra -- In July 1973, when Berra's Mets trailed the Chicago Cubs by 9½ games in the National League East; the Mets rallied to win the division title on the final day of the season.

There is an item on this in the CBC National news tonight. It very uncritically passes the "information" directly from the FDA, to the Canadian public. You were thinking maybe they would kiss by-bye to all those revenue streams without a fight?

I too, liked the Society of Interventional Radiologists' statement as it goes directly to the real truth that the FDA is trying to sell the old lie about. You don't even have to ask where they heard it.

Concerned Americans should write directly to their representatives. I can tell you Canadian politicians' e-mails, but I don't have any of the US ones. Actually, I have one, since I did write once to the Michigan governor: I retain my US vote, as I was born in Detroit.

Those over on Facebook should do some writing, too. Anybody care to write a "press release" from TiMS-CCSVI?

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"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Well I guess it isnt conspiracy theory if they really are out to getcha.

Seriously though, we could get NO coverage on CCSVI of any import, until the media is able to have headline head-spinners like this:

FDA warns against multiple sclerosis treatment

WASHINGTON — An experimental treatment for multiple sclerosis has caused death, strokes, nerve damage and abdominal bleeding and has no proven benefits for sufferers of the disease, the Food and Drug Administration warned Thursday.

Talk about spin, the vast majority (as opposed to our tiny message board) will get their first taste of us rogue elements like the headline above which appeared in the LA Times.

Every neuro worth his salt will have the above memorized for those few testy patients who dare to broach the subject. First impressions are a bear to overcome. (Its not even "experimental anymore, rather is ineffective, and deadly, any questions?).
We've got a long, uphill battle ahead. Now it will be fairly easy to dovetail the above with CCSVI research proponents, and let the branding begin. Then the adjectives will flow off the tongue with ease.

Not shocking, totally expected from the beginning, the gloves have officially come off. First, you marginialize, then, control the information flow. Imagine where we would be without the internet. Exactly.

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RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko, Virtually symptom free since, no relap

A number of people are reading the FDA Warning as a sign that the agency is interested in CCSVI treatment, wants to promote research on CCSVI, and is seeking public input on it.

But if you read the headlines, the reaction to the FDA warning is probably exactly what was intended by those who pushed the FDA to issue the warning in the first place.



Hard to view that as a positive for CCSVI research.

One of the first consequences likely will be that any insurance company now paying for treatment will seize on the FDA warning to back off and they are probably getting phone calls today suggesting this.

Anyone considering providing treatment will also likely be warned off.

The 380,000 or so people with MS who are not participating in This Is MS or Facebook CCSVI discussions will now know that their neuros were right to warn them against seeking treatment.

I have no doubt that all of this is exactly what the people who raised this issue with the FDA intended. Mission accomplished. CCSVI has now been officially marginalized so lets get back to obediently taking those MS "disease modifying drugs." There are billions of dollars at stake.

Weeeellll.....sniff....I ain't a-gonna let no eff-de-aye scare me. I already had my tonsils out. I din't need no stimps, neither.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Multi-level funny. Nice.

tilt

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...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger

This is more serious than I have been allowing in my facetious response. Dr. Mehta has an unimpeachable reputation in his field. He has memberships in:

PERIPHERAL VASCULAR SURGERY SOCIETY
SUNY AT STONYBROOK ALUMNI SOCIETY
NEW YORK MEDICAL COLLEGE ALUMNI SOCIETY
INTERNATIONAL SOCIETY FOR VASCULAR SURGERY
INTERNATIONAL SOCIETY OF ENDOVASCULAR SPECIALISTS
FELLOW, AMERICAN COLLEGE OF SURGEONS(2005)
GUIDANT ENDOVASCULAR SOLUTIONS-MEMBER PERIPHERAL ADVISORY
ALPHA OMEGA ALPHA, HONOR MEDICAL SOCIETY
NEW ENGLAND SOCIETY FOR VASCULAR SURGERY
SOCIETY FOR CLINICAL VASCULAR SURGERY
AMERICAN MEDICAL ASSOCIATION
MEDICAL SOCIETY OF THE STATE OF NEW YORK
SOCIETY FOR VASCULAR NURSING
EASTERN VASCULAR SOCIETY
SOCIETY FOR INTERVENTIONAL RADIOLOGY
SUNY @ STONYBROOK ALUMNI SOCIETY
American College of Surgeons
Society of Interventional Radiology

Dr. Mehta graduated from SUNY Stonybrook with a B.S. degree in Biochemistry in 1990. He completed his M.D. from New York Medical College in Valhalla, NY in 1994. Dr. Mehta went on to complete his residency at North Shore University Hospital at NYU School of Medicine and his Vascular Fellowship at Montefiore Medical Center at the Albert Einstein College of Medicine in 2001.

Dr. Mehta is Board Certified in both General and Vascular Surgery. Dr. Mehta is an Associate Professor at Albany Medical College and the Director of Endovascular Services for the Vascular Group, PLLC. Dr. Mehta is also the President and CEO of the Center for Vascular Awareness, a not-for-profit organization dedicated to increasing the level of education and awareness of Vascular Disease.

ALBANY MEDICAL COLLEGE, ALBANY, NY: 2001 — present
Albany Medical School
ALBERT EINSTEIN COLLEGE OF MEDICINE OF YESHIVA UNIVERSITY, BRONX, NY: 1999 — 2001
NEW YORK UNIVERSITY SCHOOL OF MEDICINE, NY, NY: 1997 — 1999

Medical School:
New York Medical College
Valhalla, NY, United States
Graduated: 1994
Residency Hospital:
North Shore University Hospital
Manhasset, NY, USA
Year completed: 1999
Fellowship Hospital:
Montefiore Medical Center
Bronx, NY, USA
Year completed: 2001

He is co-author of "The Hospitalist Manual,", People's Medical Publishing House.

Listed as co-author of 54 documents in PubMed, including:

The phase I multicenter trial (STAPLE-1) of the Aptus endovascular repair system: results at 6 months and 1 year.

This was a phase I IDE study.

and:

Pivotal results of the Medtronic Vascular Talent Thoracic Stent Graft System: The VALOR Trial.

He is in Chapter 43. In Situ Vein Bypass by Standard Surgical Technique of Haimovici's Vascular Surgery, Fifth Edition, Blackwell Science

Also Preoperative Saphenous Vein Mapping, from Noninvasive Peripheral Arterial Diagnosis, Springer London

I believe I found him through a book in a library.

The FDA should not be dragging his name through their bureaucratic mud. When I called his office the first and second times, first he would not do this work at all, then not until he had an IRB approval. I think he knows what an IDE is.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

Or maybe no lube.

I have posted on my facebook page the injustice of the pharmaseutical companies denying Canadians even a temporary repreive of horrible symptoms of m.s. that are provided all over the world. Even though my husband has a family history of vascular issues he is denied treatment here and we have to re mortgage our home to get treatment in the states. They have no problem with lipo suction which has a much higher rate of complications and death. Lets raise our voices for the ones we love!!

Someone has stepped forward with a press release to claim credit for getting the FDA to take action on CCSVI treatment, ie, "this questionable procedure:"



We are certainly blessed to have doctors like this protecting our "health and well being," not charlatans "Sacrificing Science at the Altar of Consumer Demand."

Dr. Brant-Zawadzki is a neuroradiologist, you know, right up there with brain surgery.

Doesn't sound worth $30 to me.

_________________
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'_MS' is over - if you want it
Patients sans/without patience

That put me off too.

tilt

_________________
...and I for one, welcome our new Neurologist overlords!

My before and after CCSVI treatment video http://www.youtube.com/watch?v=RhosV4_DvWw
Visit my Lego Amusement Rides website http://www.brickshelf.com/cgi-bin/gallery.cgi?m=Bolliger