DrSclafani answers some questions

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

Postby Squeakycat » Wed Aug 11, 2010 2:54 am

drsclafani wrote:
I was struck by the rapidity of publication of both articles (German Study and Swedish Study) . Surprising! Both papers were accepted within six weeks. I have never had such rapid decision, editing and publication of any of my more than 120 publications.

This debate is going to be a challenging one . . .


When the good fairy shows up, maybe we can pull together the funds to do a proper response to these 'studies.'

It would be very interesting to actually re-examine some of the patients who were found to not have CCSVI using the appropriate protocol.

I would think that finding that just one or two of these people have CCSVI would be enough to pop the bubble the neurology community is inflating with these 'studies.'
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Postby bestadmom » Wed Aug 11, 2010 4:56 am

Dr. S,

Are you planning to submit your critique of the two studies to the Annals of Neurology? it is beyond surprising to many of us that poorly designed studies would be rushed to publication in a peer reviewed journal.

Michelle
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Postby drsclafani » Wed Aug 11, 2010 5:49 am

bestadmom wrote:Dr. S,

Are you planning to submit your critique of the two studies to the Annals of Neurology? it is beyond surprising to many of us that poorly designed studies would be rushed to publication in a peer reviewed journal.

Michelle


others have responded quite well but the responses seem to be taking longer to be accepted and published than the objection seems to have taken.
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Postby drsclafani » Wed Aug 11, 2010 5:51 am

Stacemeh wrote:
I was struck by the rapidity of publication of both articles.



Hmmm, I wondered about this as well. Do you know if these papers were peer reviewed?


they were printed in peer review journals
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Postby sbr487 » Wed Aug 11, 2010 10:03 am

drsclafani wrote:
bestadmom wrote:Dr. S,

Are you planning to submit your critique of the two studies to the Annals of Neurology? it is beyond surprising to many of us that poorly designed studies would be rushed to publication in a peer reviewed journal.

Michelle


others have responded quite well but the responses seem to be taking longer to be accepted and published than the objection seems to have taken.


Dr, dont you think that sometimes such hurriedly published papers in a way lend credibility to CCSVI? I would be more worried if someone was convincing enough to have tried replicating accepted protocols and yet did not find any issues.
A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it
- Max Planck
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Postby aliyalex » Wed Aug 11, 2010 10:05 am

Powerful rebuttal. Thanks Dr S for having our backs, or our blockages! Aliyah
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Postby Cece » Wed Aug 11, 2010 10:24 am

Any thoughts on kissing balloons? Is it that two balloons are inserted into two different veins and then when they are both inflated, the second balloon helps by...?
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Postby msjen » Wed Aug 11, 2010 11:13 am

I am wondering about the stenosis coming and going thing again. When I have an MS "relapse" it lasts for about a two or more weeks. Is this related to the oxygen deprivation in the brain or what?? Thanks!
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Postby kaboodah » Wed Aug 11, 2010 11:41 am

Dr. S -
I know you are not an MS doctor, you do the plumbing (so to speak). I am wondering if you have a theoretical answer to this though. If our veins are blocked, they don't block and unblock themselves, right? Why the relapses? It would seem to me that if our veins are continuously blocked then we would be in a continuous relapse, right?
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Postby L » Wed Aug 11, 2010 12:02 pm

When will your IRB be considering another proposal for a study Dr Sclafani?
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Postby adamt » Wed Aug 11, 2010 3:02 pm

Hi Dr S and others,

After a false negative catheter Venogram - Dr S said here was CCSVI when i sent him the images, i am now going to Poland for new testing (doppler/MRV) and treatment

But dr S said i had May Thurners too, so what do i ask or request my doctor to do for the procedure?

do i just ask them to enter via the left illiac vein?

how can i persuade them too, as i read its more difficult for them to enter through the left

thank you
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Postby SofiaK » Wed Aug 11, 2010 6:59 pm

Hi Dr S,

I just really need to know if there are people in wheelchairs who do the liberation procedure with good results.

I'm in a wheelchair now for the past 2 years. I've had RRMS and I still get RR symptoms, but my walking hasn't returned. Strange. Frustrating.

Now, I learn from a Doppler test that my IJV are narrow at certain points.
I'd like to have the proedure done.

I've learned that this procedure helps movement. Has restoring circulation helped anyone walk again? Is there reason to hope?

Thanks for shedding some light.
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Postby drbart » Wed Aug 11, 2010 7:45 pm

adamt wrote:Hi Dr S and others,

After a false negative catheter Venogram - Dr S said here was CCSVI when i sent him the images, i am now going to Poland for new testing (doppler/MRV) and treatment

But dr S said i had May Thurners too, so what do i ask or request my doctor to do for the procedure?

do i just ask them to enter via the left illiac vein?

how can i persuade them too, as i read its more difficult for them to enter through the left

thank you


Which dr S, and which Poland doctor?
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Postby newlywed4ever » Wed Aug 11, 2010 7:48 pm

AdamT - I was treated 6 days ago by Dr S in Albany. The preferred entry is through the left side. They prepped me on the left side, and while I'm in twilight zone and the entry was made, the doc asked his nurse to prep right side. Afterwards, I get the scoop... Dr S(#2) told me he thought he had seen the worse case of May-Thurner - before he saw me! (yeah, I've always been special :) He wasn't sure he could get through and that is why they prepped the right side; as it turned out, he didn't have to. And about that M-T....he doesn't recommend doing anything there as my body has efficiently overcome it (wish I had asked for more details...and will).
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Postby drsclafani » Wed Aug 11, 2010 9:16 pm

sbr487 wrote:
drsclafani wrote:
bestadmom wrote:Dr. S,

Are you planning to submit your critique of the two studies to the Annals of Neurology? it is beyond surprising to many of us that poorly designed studies would be rushed to publication in a peer reviewed journal.

Michelle


others have responded quite well but the responses seem to be taking longer to be accepted and published than the objection seems to have taken.


Dr, dont you think that sometimes such hurriedly published papers in a way lend credibility to CCSVI? I would be more worried if someone was convincing enough to have tried replicating accepted protocols and yet did not find any issues.

no, a negative is a negative
the frustrating part of this is that advocates need to publish, but the irb process seems to take so long
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