DrSclafani answers some questions

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

Re: DrSclafani answers some questions

Postby Sharon » Wed Mar 08, 2017 5:46 pm

Thank you Dr Sclafani for your time today to discuss the results of the UBC trial results. The audio is posted on CCSVI Alliance Facebook
https://www.facebook.com/12589242742911 ... 590161655/

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1282
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

Advertisement

Re: DrSclafani answers some questions

Postby drsclafani » Wed Mar 08, 2017 8:30 pm

Cece wrote:
drsclafani wrote:Yes, because flew is proportional to the fourth power of the reasons, I estimated that there was an 80 per cent reduction of blood flow AFTER angioplasty

Did the diameter of the vein decrease?
Going from 54% stenosed to 39% stenosed would seem to be an improvement albeit a small one but if the diameter decreased, then that could explain your reasoning.

("Proportional to the fourth power of the reasons" is explained here: http://www.cvphysiology.com/Hemodynamics/H003 )

Why would the flow decrease after angioplasty? Was the balloon sized right for the vein? In slide 14 (Procedure 2), it looks like a big balloon. As far as I can tell, the images are immediately after angioplasty when the vein should be at its largest.

I'm unhappy with the results and I like getting an understanding of what went wrong but dang I hope the IRs at SIR see what you're seeing.

Cece, angioplasty improved the blood flow, but not by much.
I estimate that the blood flow reduction from the original stentic lesion of about 55% was about 93% reduction
after angioplasty, the blood flow reduction was improved to about a 80% reduction. But an 80% reduction is still a large amount
I treat the stenosis with the intent to eliminate stenosis completely Getting flow to be 90-100 % I will inflate the balloon as many times as necessary to do that and when I cannot open it up, I consider that a failure

In the Vancouver study, They were able to inflate the balloon two times.

To my eyes, the balloons looked too small but I do not yet have data on range and average balloon size or balloon pressure

Seems like a lost opportunity

DrS
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
User avatar
drsclafani
Family Elder
 
Posts: 3180
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York

Re: DrSclafani answers some questions

Postby NZer1 » Wed Mar 08, 2017 9:48 pm

Hi all,
I have made this comment elsewhere and will put it here as well because of the importance of the basic issue we are seeing in regard of the Neurology and $$ MS Industry bias to discredit CCSVI at any cost, eg $5.4 million study which was doomed from moment 1 to give a negative result with the 'people' chosen to spend the money, clever work by the anti CCSVI/pro-drug brigade! A refund is appropriate, imo!
"It seems that there is an issue that is beyond whether CCSVI is a condition in de-generative diseases?
I would like to see 'someone or a group' take this to a new level where there is a request for a refund of the funds for the study, $5.4 million.
There was talk of similar issues with the Buffalo study and the biased conclusions in the documents and more importantly to the Media.
To present lies as conclusions on Health matters needs to be addressed, imo.
Corruption is occurring masked as Science.
In the study they used a sham arm, BUT the entire study process was a sham, the conclusions where made before the study commenced and the results have been edited to give the 'sham conclusion' air time!"
Nigel
User avatar
NZer1
Family Elder
 
Posts: 1624
Joined: Thu Feb 18, 2010 3:00 pm
Location: Rotorua New Zealand

Re: DrSclafani answers some questions

Postby pelopidas » Wed Mar 08, 2017 11:31 pm

http://video.theloop.ca/news/top-storie ... MEDvhh7H66

I am so glad that i didn't wait for the papers all those past 6 years
getafix
pelopidas
Family Member
 
Posts: 71
Joined: Mon Sep 05, 2011 6:30 am
Location: Greece

Re: DrSclafani answers some questions

Postby NZer1 » Thu Mar 09, 2017 6:26 am

Hi Sal, the press releases made by the study authors does not match the information released at the same time, in essence they have lied and that imo is a bias for a purpose.
I cannot understand why people are afraid to confront the authors and ask WHY they have presented this bias!
It's time to stop using politically correct politeness as an excuse that allows corrupt methods of media manipulation for agendas to flourish and greed to rule over us, imo!
The same media that released the statements has a duty, imo, to now go back and clarify this situation because the same media has been used as a tool in the bias being made public.
The insulation used by the authors, because publishing by media gives them protection from being confronted for their lies, is a HUGE problem in so many situations today, whether its in Politics or Medicine ................ :)
Nigel
User avatar
NZer1
Family Elder
 
Posts: 1624
Joined: Thu Feb 18, 2010 3:00 pm
Location: Rotorua New Zealand

Re: DrSclafani answers some questions

Postby ElliotB » Thu Mar 09, 2017 7:07 am

The findings of this newest study is consistent with other similar studies done in recent years and with the experiences posted by many here on this site.
ElliotB
Family Elder
 
Posts: 1640
Joined: Mon Feb 03, 2014 4:08 pm

Re: DrSclafani answers some questions

Postby drsclafani » Thu Mar 09, 2017 12:29 pm

ElliotB wrote:The findings of this newest study is consistent with other similar studies done in recent years and with the experiences posted by many here on this site.

Dear Elliot, there has been no similar study ever done to this one. This is the first randomized double blinded trial with sham arm that had power. It is unfortunate that the study did not use modern views of the treatment paradigm but said they duplicated a study done by Zamboni in 2008.

I am looking further at this study to assess additional questionable design flaws that may have led to this outcome.

I am a friend of the interventionalist and know that he did the best job he could given the constraints of the protocol design. However leaving large residual stenoses after angioplasty (as high as 38%) is not good enough to get good results.

Also this study had average duration of disease before treatment that was almost twenty years. The percentage of patients with relapsing remitting disease was rather low and the progressive MS was lumped into one group, rather than stratified into secondary and primary progressives. These two selection choices could easily lead to unfavorable results.

Also the incidence of venous disease, the incidence of multiple vein stenoses and the incidence of no venous disease were all out of sync with my data and experience.

I said many years ago that I would stop performing these treatments if good randomized trials failed to show evidence of benefits. Very sadly I have concluded that this was not a good trial (at least based upon the abstraction provided). I will wait to read the peer reviewed paper before making final comments on this disappointing effort.

DrS
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
User avatar
drsclafani
Family Elder
 
Posts: 3180
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York

Re: DrSclafani answers some questions

Postby NHE » Thu Mar 09, 2017 10:04 pm

http://www.cbc.ca/news/health/multiple- ... -1.4014494

"Anybody who knew anything about MS knew the idea was nonsense from get-go," said McGill University neurologist Dr. Michael Rasminsky.

This reads like smug gloating, and biased.

"The theory that impaired drainage from the brain was responsible for causing lesions of MS didn't make sense for a number of reasons," said Dr. Rasminsky

So, impaired blood drainage from the kidneys, liver, or any other organ for that matter, doesn't damage the organ?

We recently learned that the brain has a lymphatic system. Yet for years we were told by the neurologists that this was not the case and that the brain was "immune privileged."

How can they be so smug?

:?:
User avatar
NHE
Volunteer Moderator
 
Posts: 4979
Joined: Sat Nov 20, 2004 3:00 pm

Re: DrSclafani answers some questions

Postby NHE » Fri Jan 05, 2018 4:47 am

Hi Dr. Sclafani,
How have the results of the Brave Dreams trial affected your practice of treating CCSVI?
User avatar
NHE
Volunteer Moderator
 
Posts: 4979
Joined: Sat Nov 20, 2004 3:00 pm

Re: DrSclafani answers some questions

Postby drsclafani » Fri Jan 05, 2018 10:05 am

NHE wrote:Hi Dr. Sclafani,
How have the results of the Brave Dreams trial affected your practice of treating CCSVI?

Not at all. Zamboni's premise that MS might be caused by venous obstruction is not answered by this study. The paper asserts that treatment of obstructions is not shown to improve the condition of patients in a statistical way. I would say that treatment by the authors techniques did not show benefit but their project did not reach their planned statisticl relevance, enrolling too few patients to make the statements they sought.

But, if you recall, I stated many years ago that randomized trials were premature because there was no standard accepted best practice of the procedure, a necessary consition in which to judge the treatment. As in his early papers, the treatment was inadequate. The high restenosis rate in those early papers indicated that technical modifications were necessary. In this new study, they used compliant low pressure balloons to start and then only went to they thought that was necessary. They did not use IVUS and thus were guessing on balloon size since venography is inaccurate in estimating balloon size. They rarely used high pressure balloons and, when they did, they used balloon sizes that I am quite confident did not expand the lesions to effect ively break the stenosis. Although Zamboni alluded to the effects of the surrounding venous structures such as the dural sinuses, the renal vein and the iliac vein, these were not studied and their role in venous congestion should not be overlooked. A group of us are evaluqting their statistical analysis as well.


So at the current time, I do not find a compelling reason to stop treatments or to revert to the techniques that my experience has shown do not work. On compassionate grounds, I continue to treat patients with venous obstructions, using IVUS, high pressure large balloon dilatation, and inclusion of Nutcracker and May Thurner treatments in the comprehensive relief of symptoms associated with venous obstructions in patients with MS.
Salvatore JA Sclafani MD
Patient contact: ccsviliberation@gmail.com
User avatar
drsclafani
Family Elder
 
Posts: 3180
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York

Re: DrSclafani answers some questions

Postby NZer1 » Fri Jan 05, 2018 4:18 pm

Hi all,
thanks Dr S for adding your advice and for giving some rationality to the drama fest!
I am stunned that there haven't been responses like yours to a paper that is giving a false impression.
I sometimes wonder about Medical Science and the games that are played! :)

One personal thought process that has been floating around is how the degenerative diseases that have been said to be 'auto-immune' or the 'spectrum of auto-immune diseases' has Science people looking for patches and ways to stop the natural which is for the body to express symptoms and become disabled to warn the 'user' that there is a problem.

If instead, the people of Science ponder that the nerves in MS that are seen to be causing the symptoms are of a similar collective function and are also grouped in sites that are regularly visualized.
These same nerve groups have failed for a reason.
If the people of Science look at the similarities of the nerve cells that are being removed/recycled by immune cells, as they should be, then a pathway can be detected to a cause or source. If things like temperature change make the nerves transmit signals differently to/than 'normal' or they loose the connection of the signal pathway then that is a clue of the issue 'overall' in the illness. If the nerve conduction is the feature problem overall then the conduction is also a connection issue at a cellular level.
So an error that occurs is not immune cell driven but a range of issues that are positively impacted by the treatments such as the George Jelinek OMS method or the Swank diet, the Best Bet diet, or for some people the Terry Wahls method. These all give insight that the immune system can manage but that the physical issues remain.
So back to pondering that the source of the problem is more likely vascular flow or flow issues including reflux and no flow or physical issues that impact flows. These are the Lifeblood and also the potential for the lack of Lifeblood!
There are many people who have vascular issues that cannot be simply 'changed' and not by PTA.
There are many people who have other health issues that are co-morbid and co-incidence challenges such as diet driven challenges like gluten/Coeliac disease, or muscle compressed veins or missing veins altogether and these are people who have the clues for MS researchers to learn that the auto-immune system driven disease concept is not happening in MS.

Must be close to a nap time, I'm ranting! ;)
Cheers Sal, Happy 2018!
User avatar
NZer1
Family Elder
 
Posts: 1624
Joined: Thu Feb 18, 2010 3:00 pm
Location: Rotorua New Zealand

Re: DrSclafani answers some questions

Postby NHE » Sat Jan 06, 2018 6:56 am

drsclafani wrote:
NHE wrote:Hi Dr. Sclafani,
How have the results of the Brave Dreams trial affected your practice of treating CCSVI?

Not at all...

So at the current time, I do not find a compelling reason to stop treatments or to revert to the techniques that my experience has shown do not work. On compassionate grounds, I continue to treat patients with venous obstructions, using IVUS, high pressure large balloon dilatation, and inclusion of Nutcracker and May Thurner treatments in the comprehensive relief of symptoms associated with venous obstructions in patients with MS.

Thanks for the prompt reply. It's good to hear that you're still with us.
User avatar
NHE
Volunteer Moderator
 
Posts: 4979
Joined: Sat Nov 20, 2004 3:00 pm

Re: DrSclafani answers some questions

Postby Cece » Sat Jan 06, 2018 5:53 pm

drsclafani wrote:But, if you recall, I stated many years ago that randomized trials were premature because there was no standard accepted best practice of the procedure, a necessary consition in which to judge the treatment. As in his early papers, the treatment was inadequate. The high restenosis rate in those early papers indicated that technical modifications were necessary.

Good god you did. This was from 2010:
chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic10680-3420.html#p135986

3. I argued that demands for a randomized trial were very premature if needed at all. i showed them the diagnostic challenges, the laack of clarity about the type, size, duration of balloon angioplasty, the unclear role of doppler, MRV, venography etc made it very unclear what represented best practice. without that knowledge we cannot compare liberation to durgs or to sham, etc. I gave countless examples of the confusing issues and numerous examples of bizarre veins
Cece
Family Elder
 
Posts: 9303
Joined: Mon Jan 04, 2010 3:00 pm

Re: DrSclafani answers some questions

Postby CCSVI2017 » Thu Jan 11, 2018 12:55 am

Dr Sclafani we'd like to request for your opinion about the procedure that has been made recently in CCSVI Clinic. The Clinic was set up by Czarek and Anna Głuch from Poland (Anna was your patient about 4 years ago).

The Clinic looks at the problem of CCSVI and its relationship to MS more comprehensively looking for abnormalities in blood circulation of cerebral sinuses and their tributaries, superior and inferior vena cava and cerebrospinal venous system.

The medical team uses advanced technology to diagnose venous abnormalities. What's more the Clinic is able to measure vascular pressure gradients which can help in finding pathologies invisible for other imaging methods. Using intravascular ultrasonography the medical team can see detailed anatomy of veins in the real time, reaching even cerebral sinuses.

The aim of the procedure is to equalise pressure in whole cerebral and spinal blood flow. Maybe this is a key solution for MS and CCSVI?

In december 2017, the first procedure of restoring normal blood circulation in whole cerebrospinal venous system has been made. The patient was 35 years old and he has had MS since 4 years. During neurological examination it was found that patient has balance disorder, fatigue and paraparesis. The MRI shows massive collateral outflow and reduced drainage from internal juglular veins. Examination using intervasular ultrasonography (IVUS) confirmed narrowing in the cerebral sinuses. Venography revealed prolonged contrast stop in both internal jugular veins in horizontal position. After changing the position of the table, the blood start to drain through the collateral circulation. After passage with catheters and IVUS head through venal structures of head and neck the blood has started to flow normally. Angioplasty was not necessary.

We hope for your opinion about this case .

We will be grateful if you could comment on our approach to CCSVI problem. Do you think it’s a good direction to look for venous deformations in intracranial veins and sinuses and to focus on restoring normal venous pressure?
CCSVI2017
Newbie
 
Posts: 1
Joined: Thu Jan 11, 2018 12:49 am

Re: DrSclafani answers some questions

Postby Sharon » Mon Jan 15, 2018 3:31 pm

NZer1
I am stunned that there haven't been responses like yours to a paper that is giving a false impression


There have been commentaries written but have been rejected by JAMA....

Hope you are well,
Sharon
User avatar
Sharon
Family Elder
 
Posts: 1282
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

PreviousNext

Return to Chronic Cerebrospinal Venous Insufficiency (CCSVI)

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service