DrSclafani answers some questions

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

Postby newlywed4ever » Thu Apr 08, 2010 4:27 pm

And Holly must be working overtime since I rec'd an email and she's posted on this site - both of which were way past 5:00 EST. Gotta love the devotion from that office!
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Postby bestadmom » Thu Apr 08, 2010 4:31 pm

I've received emails from Holly at 1:30 am. She needs a little vacation.
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Postby Lyon » Thu Apr 08, 2010 4:50 pm

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Postby drsclafani » Thu Apr 08, 2010 6:56 pm

drsclafani wrote:
Quote:
Dr. S-

The docs in Poland discovered 95% of their MS patients had ccsvi stenosis. Was your experience similar with the folks you've treated?


no. It has been 100%. But i am sure someone will be normal sometime


Dear drsclafani
Not to put you on the spot but this is hitting on the crux of the biscuit.....how confident are you that "normal" doesn't also include venous stenosis?

Of course the natural assumption is that venous stenosis isn't a common factor in the general public and Zamboni (unconvincingly-without adequate testing) showed little or no stenosis in his controls, Buffalo showed higher rates but less than MS, also not utilizing adequate testing.

I'm not going to use this guy Twisted Evil because I don't feel that way, but honestly, considering that the most conclusive test of venous obstruction is catheter venogram and that has yet to be used on a control, how can it convincingly be considered that "normal" is synonymous with lack of stenosis?

I'm still on the Sclafani bandwagon....if you make this convincing Laughing
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lyon, i see that you enjoy the debate, but its not a game

to answer your question, my control has included about 100 carotid arteriograms per year done to evaluate intracranial aneurysms and trauma of the neck. The venous phase of those ARTERIOGRAMS show me the jugular vein. working for 38 years , i guess that is ober 3,000 arteriograms on otherwise normal people without MS, (my general patient population is young healthy african american males). I never see the slow flow, the narrowings, that i see on the VENOGRAMS of caucasian MS patients. That is my control.

Unfortunately most of those arteriograms were cut film studies done over the first thirty years of my practice when CTA was used most of the time for aneurysms and penetrating neck trauma was reduced by the dramatic reduction in violence in New York since the year 2000.

Not a randomized study. so you win lyon.

nonetheless i am confident in my assessment.
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nicely said.

Postby hwebb » Thu Apr 08, 2010 7:03 pm

nicely said.
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Postby Lyon » Thu Apr 08, 2010 7:10 pm

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Postby mshusband » Thu Apr 08, 2010 7:18 pm

On the bandwagon of Dr. Sclafani officially now Lyon?
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Postby bestadmom » Thu Apr 08, 2010 7:21 pm

Dr. Sclafani,

You rock!

Ang
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Postby Cece » Thu Apr 08, 2010 9:10 pm

drsclafani wrote: working for 38 years , i guess that is ober 3,000 arteriograms on otherwise normal people without MS, (my general patient population is young healthy african american males). I never see the slow flow, the narrowings, that i see on the VENOGRAMS of caucasian MS patients.


You had said early on that you had not seen these sorts of twisted malformations before...I had not known for sure what that meant exactly or how often you were up in the neck looking...this answers that question and then some.

Lyon wrote:As you mentioned this isn't a game so any winning doesn't come that easily.


I think it was his sarcasm showing again when he said you win.... :) But seriously Lyon welcome aboard....
"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 MrSuccess » Thu Apr 08, 2010 9:35 pm

nothing changes with dear old Bob :roll:


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Postby costumenastional » Thu Apr 08, 2010 10:39 pm

drsclafani wrote:
Dr. S-

The docs in Poland discovered 95% of their MS patients had ccsvi stenosis. Was your experience similar with the folks you've treated?


no. It has been 100%. But i am sure someone will be normal sometime


HAHAHA I wouldnt bet on that my dear doctor...
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Postby Zeureka » Fri Apr 09, 2010 12:37 am

Dear Dr Sclafani,
I know stent issue was already discussed, but lost a bit the overview to follow on all the answers...Hope my questions are not too repetitive:

1. Is it true that in a few months(?)/years(?) - how long do you think it will take? - new specific vein stents will be developed and placed on the market?

2. What is the advantage/difference of these stents compared to the currently applied nitinol stents? Is there really any advantage/big difference at all?

3. Basically could it be worthwile for the moment to go only for angioplasty (with risk of restenosis) and wait for these new vein stents or will those not change much in terms of potential risk/advantages - the risk and advantage mainly remaining in the same range? So might some of these news of new stents to be developed for veins be only a marketing issue?

4. Is it generally difficult/or even impossible to replace stents later on, or depends on where the stent is placed? eg in internal jugular close to junction of brachiocephalic vein could be problematic to replace? other areas easier to remove and replace?

Thanks a lot for your views on this!
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Postby Mutley » Fri Apr 09, 2010 4:59 am

drsclafani wrote:I have been thinking about how to harness the energy and experience of patients on this site. I have fantasized about creating research measurement tools to learn about the subjective experiences after liberation. Imagine capturing the data and partnering on such a project.

what do you think?


Count me in, I'd love to help!
Mutley goes to Poland 1st symptom was Optic Neuritis in 1998, DX RRMS Jan 2001, DX SPMS 2007. Last EDSS by doctor 7.5
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Postby Zeureka » Fri Apr 09, 2010 5:18 am

Mutley wrote:
drsclafani wrote:I have been thinking about how to harness the energy and experience of patients on this site. I have fantasized about creating research measurement tools to learn about the subjective experiences after liberation. Imagine capturing the data and partnering on such a project.

what do you think?


Count me in, I'd love to help!
Oh, doc, great idea, I guess many of us would! Standard criteria and research measurement tools assisting interventionists in developing comparable observational studies on CCSVI across the world would be great! Such observational studies could then support the direction of results from clinical trial work, I guess!
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Postby bretzke » Fri Apr 09, 2010 5:41 am

Many U.S. health insurance companies cover MRV and ultrasound tests for CCSVI. If CCSVI is confirmed through this testing, will these same insurance companies cover the Liberation treatment if it follows an IRB?

The costs to insurance companies for current MS drugs is staggering. Even if the Liberation procedure was required every 18 months to address restenosis, it would still be less expensive to an insurance company than current drug treatments.

Are insurance companies following CCSVI developments? I know Big Pharma is and they don't like it!
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