This Is MS Multiple Sclerosis Knowledge & Support Community

In advance of his upcoming meeting, Dr. Sclafani gives a historical overview and current perspecxtive on CCSVI, followed by a supporting commentary by Dr. Dake and Dr. Katzen:

http://bmctoday.net/evtoday/2010/07/art ... ufficiency

Cheers,

~Sandra

Thank you Sandra!!!!!!!!!!!!
This is an amazing article. I'm sending it everywhere and posting it to my FB page.

This is the kind of information that pwMS need to know.

Well done Dr. S








Mr. Success

As much as I enjoyed (don't know if that is the right phrasing!) this article which really explains CCSVI, investigation of the problems and the current treatments available, and as much as I admire Dr S for all his effort and input into TiMS, I am concerned that this article might just give more ammunition to people like the MS Society.
In the Caveats section of the article, Dr S states ... "the improvements WARRANT FURTHER INVESTIGATION and WELL THOUGHT-OUT TRIALS. SAFETY STUDIES ARE NEEDED TO DEVELOP MORE INFORMATION AND EXPERIENCE. Additional work and PUBLICATION OF RESULTS ARE ALSO NECESSARY.....".
Then in Dr Dake's commentary he states ..."We propose a global initiative to meticulously document the prevalence of venous anomalies in MS.....
In part, recent grants from the NMSS awarded to seven investigative groups to study CCSVI will help initiate this effort in the US and Canada. These observations MAY PROVIDE A BASIS FOR A CLINICAL TRIAL IN MS TO ASSES THE LONG-TERM SAFETY AND EFFICACY OF ENDOVASCULAR PROCEDURES......."
Now I may be reading / understanding this entirely incorrectly, I hope I am and that someone will post telling me where I am going wrong here, but the above quotes from the article are exactly what the MS Societies are saying - we must have more research before this treatment can be accepted - and which is why approval of treatment will take several more years in North America.
Yes we all agree that research into this condition is needed, chicken and the egg, cause or by-product, better techniques for imaging, better stent options etc, etc. But I think that we all know how long the MS trials on finding the "correlation" will take despite it being already pretty much proven, how even after that they will want to run years of additional trials into angioplasty treatment to see how safe it is, including taking years to follow up on restenosis testing.
So again I'm hoping I'm reading this wrongly, because I feel this might have played right into the hands of MS Soc and Neuros. Please tell me I'm wrong !!!!!!

Welshman,

I think you are taking it for face value and your interpretation is correct.

Dr. S is a published researcher, professor and practicing doctor. He knows what is needed for the medical community to accept the CCSVI/MS hypothesis and agree upon diagnostics and standardized treatments. The only way to do it is with statisticlly significant results from controlled studies. We all want the medical community to accept this yesterday, but it won't happenn that way.

There will always be doctors treating off label for specific conditions and if we're out of wait, we seek them out. But those doctors whose careers have been built on research will not rest until they can say a hypothesis is shown to be true.

I agree with bestadmom. Dr. S is approaching this through the accepted scientific modality within the U.S.

I agree we have to look for those off-label doctors and those who will be willing to treat a venous disorder on its own rather than in connection with MS.

There is still so much that needs to be learned, and not everyone has benefited from liberation, as a thread on that here has shown due to various complications. However, I think that patients deserve to be treated if they want this treatment and we must continue to speak out that venous abnormalities are a legitimate medical concern and deserve to be treated regardless of a person having M.S.

Our PCPs and neurologists who refuse to refer us to a vascular specialist or an IR are violating the Hippocratic oath, imho.

selkie wrote:I agree with bestadmom. Dr. S is approaching this through the accepted scientific modality within the U.S.

I agree we have to look for those off-label doctors and those who will be willing to treat a venous disorder on its own rather than in connection with MS.

There is still so much that needs to be learned, and not everyone has benefited from liberation, as a thread on that here has shown due to various complications. However, I think that patients deserve to be treated if they want this treatment and we must continue to speak out that venous abnormalities are a legitimate medical concern and deserve to be treated regardless of a person having M.S.

Our PCPs and neurologists who refuse to refer us to a vascular specialist or an IR are violating the Hippocratic oath, imho.

i agree with everyone


the reason i wrote those caveats was that there is no conclusive evidence. To have been totally 1000% positive, would have been to lose all credibility with the medical community.

The goal of my article was to familiarize physicians, especially those who perform endovascular procedures about ccsvi. they are your allie.

As i have said before interventional radiology is innovational radiology

So many agreeable people in one place....

And why do you think that is!!!

The goal of my article was to familiarize physicians, especially those who perform endovascular procedures about ccsvi. they are your allie.

I think you will acheive this goal. Great job! Thanks for arming us with a clear paper which will be convincing to all who read it.

I went looking for more info on Endovascular Today, here is what I found:

Mission Statement
Endovascular Today is a publication dedicated to bringing you comprehensive coverage of all the latest technology, techniques, and developments in the endovascular field. Our Editorial Advisory Board is composed of the top endovascular specialists, including interventional cardiologists, interventional radiologists, vascular surgeons, neurologists, and vascular medicine practitioners, and our publication is read by an audience of more than 22,000 members of the endovascular community.

Great. Thank you Dr Sclafani.

This is an EXCELLENT review, Dr. Scalfani. Thanks from the bottom of my heart (and millions of others) for writing such a clear, concise and well-documented piece. We are so fortunate that you've come on board the CCSVI express, and that BestAd (our angel) found you. I truly believe that each and every doctor is bringing their knowledge and experience to this research, and it gives me great hope. Have a terrific seminar at downstate, and keep learning, discussing, documenting and disseminating. It is much appreciated--
cheer

Dr Sclafani,

I was so happy to read your review !!! And I am also happy to say that I had a conversation today with an IR who will be at your symposium .

Most hopefully,

ozarkcanoer

I was so glad to see that Dr. Sclafani agreed with all that had been said, because that's how I was feeling! (I guess Endo Today wasn't the right place to argue for compassionate treatment now?) An excellent article to share with doctors who are unfamiliar with, or perhaps resistant to, CCSVI in MS, as well as interventionists already 'on board". Just sent it to two neurologists, one vascular surgeon (who will be at Dr. S's symposium!), and Hollie Schmidt at the Accelerated Cure Project for MS. More to be sent out. By the way, Hollie has a well-written, balanced article on CCSVI in the ACP's spring newsletter, written for lay people, but using the scientific/medical community's approach. Available online. Don't know if it's already been posted here or on Facebook. Hoping Hollie will be proactive in getting CCSVI treatment studies going in the Boston area.