DrSclafani answers some questions

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

Postby girl69 » Tue Jun 22, 2010 4:39 am

Thanks Algis :) Do you think not using it entails a much bigger risk of missing things then ? Should it be a standard part of the procedure I wonder...
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Postby belsadie » Tue Jun 22, 2010 6:03 am

Dear Dr S.,
I'm not sure if this has been mentioned..but..here goes. I just read about a stent FDA approved for use at A-V anastomosis...FLAIR Endovascular Stent Graft-P680002 [7/23/05]
Is this the stent being used now when used in Liberation?
If not, why not? Just curious....It is approved for arterial/venous purposes.
Could that be the fly in the ointment?

Thanks for your inclusion in our battle for Liberation. :roll: :roll:
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Postby shye » Tue Jun 22, 2010 6:35 am

@girl69
I'm pretty sure if you scroll this thread, you will find somewhere that Dr S says that the ivus is the most crucial--he wouldn't do without it. But check, don't quote me.
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Postby Cece » Tue Jun 22, 2010 8:53 am

here's an April 21st quote from DrS on the subject of how-essential-is-IVUS:
drsclafani wrote:geekgirl

i think that the diagnosis of ccsvi is difficult. none are expert at this since we are still in the phase of discovery. I would not trust one study. i would not trust anything short of catheter venography with ivus

and another quote from May 19th:
drsclafani wrote:Funny, after all the years of competition, i just posted my ideas before publicatoin....

it is extremely useful in
1. detecting particlly duplicated IJV
2. documenting stiff or fused valve leaflets
3. measuring stenosis is most accurate
4. proving that narrowings in the mid and upper jubular veins are physiologic not stenotic
5.
"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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Postby CureIous » Tue Jun 22, 2010 9:04 am

Amen on the IVUS, after 3 MRV's (1 pre-op, 1 at 2 month follow up, 1 at 10 month follow up), an ultrasound, and 2 venographies, only the IVUS caught the valve/leaflet/flapper/doohickey hanging around like an unwanted guest. Can only imagine the myriad of combinations possible in the venous system across the patient spectrum.

It can include many who have been excluded via above mentioned imaging techniques, and THAT is huge.

We can talk about gold standard veno till the cows come home, but without IVUS we don't have the whole story. After all, while one has the guidwire up there, doing the IVUS isn't that much more effort.

To me, it's like rebuilding the engine without bothering to see if the oil filter is any good or not... May as well do it while we're in there!

Mark
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
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Postby belsadie » Tue Jun 22, 2010 10:19 am

Did I miss it? Did the good doctor get IRB approval??? Does anyone know??
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Postby girlgeek33 » Tue Jun 22, 2010 10:23 am

belsadie wrote:Did I miss it? Did the good doctor get IRB approval??? Does anyone know??


Nothing yet, tho I've heard rumor that it has not been approved yet, no specifics. So eager to hear what's up....
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Postby mrhodes40 » Tue Jun 22, 2010 10:28 am

wonder if Dr Simka uses the left femoral


I asked Dr Simka directly in an interview for a book I am writing if they image the lumbar veins and he said no they do not.

It is exciting to see the development of skill in this area. MY own repair was partial (Dake-stents) I am certain a lower valve was missed on the left as that vein is collapsed the whole way up. That kind of thing is going to happen until everyone understands what to do and they share with one another the skills they develop and the sneaky way these flaps and doohickeys can hide from them. Reading this thread is an eye opener along those lines and it really brings home what it is like on the other side of the doctors mask as you try to learn. Thanks Dr Sclafani!

Thankfully it appears these wonderful docs are doing that! :D
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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Postby Cece » Tue Jun 22, 2010 10:49 am

girlgeek33 wrote:Nothing yet, tho I've heard rumor that it has not been approved yet, no specifics. So eager to hear what's up....

Is it possible that he doesn't know yet? Since it can be hard to catch up with the head of IRB and find out even when they're in the same time zone? He's been fantastic about sharing news with us, I think he might've posted if it were good or bad but if it's no news, then that's no news...yes, I've overanalyzed this...
"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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Postby drsclafani » Tue Jun 22, 2010 10:50 am

belsadie wrote:Did I miss it? Did the good doctor get IRB approval??? Does anyone know??



NO!!!!1
THE GOOD DOCTOR DID NOT GET APPROVED. THE GOOD DOCTOR GOT SHOT DOWN. I HAVE NOT RECEIVED THE OFFICIAL REJECTION BUT AMONG THE ISSUES THAT WERE RAISED AGSINST MY PROPOSAL WERE

1. AN OBSCURE GERMAN ABSTRACT REPORTING TEN PATIENTS THAT SHOWED NO ASSOCIATION BETWEEN CCSVI AND MS
2. A NEWLETTER OF SOME FORM STATING THAT ONLY RANDOMIZED TRIALS SHOULD BE PERFORMED.
3. THAT RANDOMIZED CONTROLLED STUDIES WERE ALREADY UNDERWAY IN BUFFALO. ANYONE KNOW ABOUT THAT?
4. THAT THE NATIONAL MS SOCIETY RECOMMENDED AGAINST TREATMENTS
5. THAT PATIENTS WERE BEING CHARGED FOR PROCEDURES. AND I HAD NO FUNDING
6. AND OF COURSE, THE WALL STREET JOUIRNAL TALKING ABOUT DAKES COMPLICATION AND DEATH

SORRY FOLKS, I AM REELING

I AM LOST RIGHT NOW.

I AM SPEAKING TO OTHERS WHO DO THE PROCEDURE TO SEE IF I CAN DO MY PATIENTS AT THEIR SITE.

I AM LOOKING FOR SOMEWHERE ELSE TO TREAT MY PATIENTS.

ANYBODY KNOW OF ANYONE INTERESTED IN INVESTING IN A PROCEDURE SITE?


SORRY TO ALL OF YOU. I AM SO UPSET :cry: :cry: :cry: :cry: :cry: :cry: :cry: :cry:
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Postby costumenastional » Tue Jun 22, 2010 10:51 am

WHAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAAATTTTTTTTTTTT???????????????????
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Postby L » Tue Jun 22, 2010 10:52 am

drsclafani wrote:
belsadie wrote:Did I miss it? Did the good doctor get IRB approval??? Does anyone know??



NO!!!!1
THE GOOD DOCTOR DID NOT GET APPROVED. THE GOOD DOCTOR GOT SHOT DOWN. I HAVE NOT RECEIVED THE OFFICIAL REJECTION BUT AMONG THE ISSUES THAT WERE RAISED AGSINST MY PROPOSAL WERE

1. AN OBSCURE GERMAN ABSTRACT REPORTING TEN PATIENTS THAT SHOWED NO ASSOCIATION BETWEEN CCSVI AND MS
2. A NEWLETTER OF SOME FORM STATING THAT ONLY RANDOMIZED TRIALS SHOULD BE PERFORMED.
3. THAT RANDOMIZED CONTROLLED STUDIES WERE ALREADY UNDERWAY IN BUFFALO. ANYONE KNOW ABOUT THAT?
4. THAT THE NATIONAL MS SOCIETY RECOMMENDED AGAINST TREATMENTS
5. THAT PATIENTS WERE BEING CHARGED FOR PROCEDURES. AND I HAD NO FUNDING
6. AND OF COURSE, THE WALL STREET JOUIRNAL TALKING ABOUT DAKES COMPLICATION AND DEATH

SORRY FOLKS, I AM REELING

I AM LOST RIGHT NOW.

I AM SPEAKING TO OTHERS WHO DO THE PROCEDURE TO SEE IF I CAN DO MY PATIENTS AT THEIR SITE.

I AM LOOKING FOR SOMEWHERE ELSE TO TREAT MY PATIENTS.

ANYBODY KNOW OF ANYONE INTERESTED IN INVESTING IN A PROCEDURE SITE?


SORRY TO ALL OF YOU. I AM SO UPSET :cry: :cry: :cry: :cry: :cry: :cry: :cry: :cry:


Sorry to hear that, bad luck. They have attacked the idea from all directions. Terrible.
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Postby costumenastional » Tue Jun 22, 2010 10:55 am

Please, dont even think about giving up. You know CCSVI is true. We cant afford to loose you dear dr Sclafani.....
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Postby Cece » Tue Jun 22, 2010 10:56 am

drsclafani wrote:3. THAT RANDOMIZED CONTROLLED STUDIES WERE ALREADY UNDERWAY IN BUFFALO. ANYONE KNOW ABOUT THAT?


It's a small study of 30 patients. First ten are getting the treatment as a safety/pilot twenty. Of the next twenty, half will get the treatment and half will get placebo. I don't know how 'underway' it currently is.

:cry: :cry: :cry: :cry:

I cannot believe this. But it'll be ok. You cannot keep a good doctor down.
"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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Postby girlgeek33 » Tue Jun 22, 2010 10:59 am

Cece wrote:
drsclafani wrote:3. THAT RANDOMIZED CONTROLLED STUDIES WERE ALREADY UNDERWAY IN BUFFALO. ANYONE KNOW ABOUT THAT?


It's a small study of 30 patients. First ten are getting the treatment as a safety/pilot twenty. Of the next twenty, half will get the treatment and half will get placebo. I don't know how 'underway' it currently is.

:cry: :cry: :cry: :cry:

I cannot believe this. But it'll be ok. You cannot keep a good doctor down.


People are starting to get contacted and scheduled for this. But they MUST be on DMDs or they are disqualified from the study!!!!


I am so sorry to hear this Dr. Sclafani. Short minded. We can't give up. There must be a clinic somewhere. Hey, there's a facility in Manhattan that just had an ER close, seems like they have space to rent????
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