Dr. Sclafani interview

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

Dr. Sclafani interview

Postby Cece » Tue Dec 21, 2010 8:23 am

Here is a sixteen minute interview, in which the phrase "age of discovery" is used only once. :wink:

http://www.vimeo.com/17889703

He goes over the need for patience so as not to rush into trials before the procedure is perfected. (Like testing a broken instrument.) Also I wasn't familiar with all the reasoning behind the idea that it takes fifty procedures to be an expert. Even after a hundred, they may still see things they've never seen before. Lots of variability to CCSVI....
Cece
Family Elder
 
Posts: 9040
Joined: Mon Jan 04, 2010 3:00 pm

Advertisement

Postby HappyPoet » Tue Dec 21, 2010 8:52 am

I can't thank Dr. Sclafani enough -- I'm sending this wonderful "Age of Discovery" interview to every member of my family and to all of my friends.
User avatar
HappyPoet
Family Elder
 
Posts: 1401
Joined: Thu Jul 09, 2009 2:00 pm

Re: Dr. Sclafani interview

Postby concerned » Tue Dec 21, 2010 9:24 am

Cece wrote:He goes over the need for patience so as not to rush into trials before the procedure is perfected.



What about rushing into selling the procedure to desperate individuals before the procedure is perfected? That's okay for the time being? Shouldn't people only be getting it done in a phase I trial or something?
concerned
 

Re: Dr. Sclafani interview

Postby malden » Tue Dec 21, 2010 9:31 am

concerned wrote:
Cece wrote:He goes over the need for patience so as not to rush into trials before the procedure is perfected.

What about rushing into selling the procedure to desperate individuals before the procedure is perfected? That's okay for the time being? Shouldn't people only be getting it done in a phase I trial or something?

Slow down concerned, I am responsible to such harsh comments ;)
malden
 

Postby prairiegirl » Tue Dec 21, 2010 10:32 am

@ concerned, I am wondering if you listened to the interview; Dr. Sclafani IS advising caution, he is not "selling the procedure to desperate individuals". Rather, he acknowledges the need to learn more in order to improve the procedure and its outcomes. As the procedure seems low-risk when compared to many other treatment options (such as DMDs, chemo etc.), why not proceed and learn about something that has the potential to improve so many lives? He does say "I think we have to have a healthy skepticism when something new happens".
But, he also says this:
"There's no question in my mind, or in my eyes, that I actually do see abnormalities in the veins of patients, mostly with multiple sclerosis, that I don't see in other disease processes, so there's something real in my view about the association..."
Coming from a specialist of his renown and experience, I take that statement as a very good reason to go down this path, and am grateful that he and other doctors have chosen to do so.
User avatar
prairiegirl
Family Elder
 
Posts: 228
Joined: Fri Feb 05, 2010 3:00 pm

Postby Cece » Tue Dec 21, 2010 10:53 am

prairiegirl wrote:But, he also says this:
"There's no question in my mind, or in my eyes, that I actually do see abnormalities in the veins of patients, mostly with multiple sclerosis, that I don't see in other disease processes, so there's something real in my view about the association..."

Ever since he mentioned the importance of vision and sight in his line of work, do you notice all the references to seeing?

Concerned, directly to your point, he mentioned in the interview that when vaccines were first invented, they were not as good or as refined as they are now, but they were still useful even before perfected. Also the data on the procedures that he or any of the AAC doctors are doing will be going into an internal registry, along with follow-up data, which will with the approval of an IRB be published upon, so that is along the lines of a phase I trial?
Cece
Family Elder
 
Posts: 9040
Joined: Mon Jan 04, 2010 3:00 pm

Postby msjen » Tue Dec 21, 2010 2:08 pm

I enjoyed the interview and think I like Dr. Sclafani even more now!
User avatar
msjen
Family Member
 
Posts: 36
Joined: Fri Apr 09, 2010 2:00 pm
Location: Minneapolis, MN

Re: Dr. Sclafani interview

Postby drsclafani » Tue Dec 21, 2010 4:29 pm

concerned wrote:
Cece wrote:He goes over the need for patience so as not to rush into trials before the procedure is perfected.



What about rushing into selling the procedure to desperate individuals before the procedure is perfected? That's okay for the time being? Shouldn't people only be getting it done in a phase I trial or something?


we do not need phase one trials for angioplasty of the jugular vein. that is nonsense fed to you by someone who appears to know nothing about venous angioplasty.

trials are not necessary to pick up nuances. there are differences but that does not mean going back to a crawl or going to some third world country to have this done. I cried when two patients on TIMS argued about whether patients in need after treatment in costa rica should be supported by their government. There is no time to ruminate about whether to act.

patients in this time of discovery are in essence supporting the discovery. No one else is. A phase one trial proves that the procedure is safe. This is already safe. we have been doing angioplasty of veins since 1982.

besides, i have been taught by patients that time is brain. and i am a good listener
User avatar
drsclafani
Family Elder
 
Posts: 3147
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York

Postby THEGREEKFROMTHED » Tue Dec 21, 2010 5:56 pm

AWESOME job Sal. Easy to understand, truthful as hell, and real....You deserve a tall mortadella with some gobbagoo Tony soprano style on rye.
User avatar
THEGREEKFROMTHED
Family Elder
 
Posts: 162
Joined: Sat Mar 27, 2010 3:00 pm

Postby drsclafani » Tue Dec 21, 2010 7:10 pm

THEGREEKFROMTHED wrote:AWESOME job Sal. Easy to understand, truthful as hell, and real....You deserve a tall mortadella with some gobbagoo Tony soprano style on rye.


a little feta on the side would go a long way
User avatar
drsclafani
Family Elder
 
Posts: 3147
Joined: Fri Mar 12, 2010 3:00 pm
Location: Brooklyn, New York

Postby soapdiva884 » Tue Dec 21, 2010 8:05 pm

Nice video!!!! Nice post by you Dr. Sclafani in regards to concerned's post also!!! YOU ROCK!
Boyfriend dx'd 6-6-06!!! RRMS............CCSVI procedure done on Nov. 13, 2010 and March 7, 2011 by Dr. Sclafani!
User avatar
soapdiva884
Family Elder
 
Posts: 167
Joined: Mon Apr 05, 2010 2:00 pm

Re: Dr. Sclafani interview

Postby concerned » Tue Dec 21, 2010 9:46 pm

concerned wrote:
Shouldn't people only be getting it done in a phase I trial or something?


drsclafani wrote:we do not need phase one trials for angioplasty of the jugular vein. that is nonsense fed to you by someone who appears to know nothing about venous angioplasty.


Well, you could note the "or something" as I am not a medical professional and I don't know all the subtle nuances of the terminology, however, I am trying to learn.

I just meant that in treating MS, it should be clearly demonstrated to the medical world at large that it is a viable MS treatment and enough to justify the hysteria and paranoia that has engulfed this grassroots movement. (If you want to argue that point I have treasure troves of messages insinuating that I'm an employee of a big pharma firm.)

Emotional pleas are all fine and dandy, but inadequate in satiating the desires of the scientific community, namely, a desire for proof. So please just clearly demonstrate it in a reputable journal how CCSVI causes or is a major co-morbidity factor in MS and how "Liberation" could alleviate MS symptoms and we can end all this suspense.
concerned
 

ccsvi

Postby blossom » Tue Dec 21, 2010 11:50 pm

darn, darn double darn!! i've been trying to get the video of dr. sclafani to come up right ever since cece posted it. for some reason it keeps stuttering through and stopping and jamming. anyone else having that problem?

i'm sure i'm missing some good info.

i have to give dr. sclafani a lot of thanks and credit for sticking with us through all the obstacles put in front of him. he was ready to retire and then ccsvi got his attention and the rest is history.

i do have a question--when does the man sleep?
User avatar
blossom
Family Elder
 
Posts: 1377
Joined: Thu Dec 03, 2009 3:00 pm
Location: south western pa.

Re: Dr. Sclafani interview

Postby NHE » Wed Dec 22, 2010 3:00 am

concerned wrote:
concerned wrote:
Shouldn't people only be getting it done in a phase I trial or something?


drsclafani wrote:we do not need phase one trials for angioplasty of the jugular vein. that is nonsense fed to you by someone who appears to know nothing about venous angioplasty.


Well, you could note the "or something" as I am not a medical professional and I don't know all the subtle nuances of the terminology, however, I am trying to learn.

I just meant that in treating MS, it should be clearly demonstrated to the medical world at large that it is a viable MS treatment and enough to justify the hysteria and paranoia that has engulfed this grassroots movement. (If you want to argue that point I have treasure troves of messages insinuating that I'm an employee of a big pharma firm.)

Emotional pleas are all fine and dandy, but inadequate in satiating the desires of the scientific community, namely, a desire for proof. So please just clearly demonstrate it in a reputable journal how CCSVI causes or is a major co-morbidity factor in MS and how "Liberation" could alleviate MS symptoms and we can end all this suspense.


I'm certain that there will be a plethora of papers published on CCSVI. However, if someone has a demonstrable problem with their veins, then why should they not be allowed to get them treated?

In addition, where is the "proof" that MS is an autoimmune disease? Nearly all of the journal articles that I've read over the years state that MS is believed to be of autoimmune origin. Moreover, the following statement was just published in a review paper in the journal Neurology...

Miravalle and Corboy wrote:Although MS is viewed by many to be an autoimmune disease, the evidence supporting this concept is elusive. There remains no evidence, for example, that Igs identified within the CSF of patients with MS are directed against any myelin proteins.


NHE
User avatar
NHE
Volunteer Moderator
 
Posts: 3395
Joined: Sat Nov 20, 2004 3:00 pm

Postby mag00 » Wed Dec 22, 2010 5:04 am

to Blossom,

Right click the video and disable "HD".

Perhaps your computer doesn't have a fast enough cpu/gpu to
handle High Definition video stream.


hope this helps
User avatar
mag00
Getting to Know You...
 
Posts: 22
Joined: Thu Feb 18, 2010 3:00 pm
Location: Ontario Canada

Next

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