DrSclafani answers some questions

[Drury]

Dr. S.

How we admire you and thank you for your continued support.

Your brilliance, wit, determination, and good humor are truly appreciated.

Thank you for being there for us.

Drury

[MS_HOPE]

Dr. Sclafani:

Do you have a direct link to your symposium announcement? I could forward it to a couple of IR's here in the Midwest.

Donnchadh

Dr. Sclafani posted this on July 5th:

The Departments of Radiology and Neurology of SUNY Downstate Medical School are pleased to sponsor a symposium on the treatment of Chronic Cerebrospinal Venous Insufficiency (CCSVI) on Monday July 26 at 9am in the Alumni Hall of Downstate's Educational Building.

CCSVI is a condition in which the main cerebrospinal venous outflow routes are obstructed, leading to symptoms of fatigue, headaches, weakness and cognitive dysfunction. The association of CCSVI with Multiple Sclerosis has been described and confirmed. Treatment by venous angioplasty was reported by Paolo Zamboni in the Journal of Vascular Surgery in January 2010 and clinical trials have begun in the United States and elsewhere.

We are pleased that Dr Fabrizio Salvi, Dr. Zamboni's neurologist partner, will attend this meeting. Also reporting their experience will be Tariq Sinan, the interventionalist who leads the Kuwaiti National Trial, Gary Siskin of the Albany Medical Center and Salvatore JA Sclafani of Downstate.

The goals of this conference will be to review the concept of CCSVI, ,to illustrate the various imaging modalities and to describe the techniques and challenges of the procedure.

The audience is encouraged to bring Powerpoint presentations of interesting or challenging cases to share with the audience during our final session.

The seminar will occur on July 26 beginning at 9 am. There will be no charge for registration

Please email me at CCSVISymposium@gmail.com if you plan to attend so that I can reserve you space.

-------------------------

PLEASE SHARE WITH YOUR INTERVENTIONALISTS. I SUSPECT THAT THERE WILL BE SOME SPACE FOR PATIENTS AND THEIR CAREGIVERS, BUT LETS HOLD OFF ON THAT FOR WHILE.


I copied and pasted this and sent it in an email to a local vascular surgeon.

[Donnchadh]

I saw this announcement before but I feel that an IR would be more impressed if it was directly from the medical center's website. Otherwise many would do a quick delete thinking it was just internet spam.

Donnchadh

[Trish317]

I saw this announcement before but I feel that an IR would be more impressed if it was directly from the medical center's website. Otherwise many would do a quick delete thinking it was just internet spam.

Donnchadh

I sent it to a vascular surgeon who I've corresponded with. He's a colleague of Dr. Siskin's so I know he isn't going to consider my email spam and delete it.

[Cece]

in truth, we just do not know yet. We have not even had one research paper focused on the valve issues. We do not have proper equipment

By proper equipment, do you mean the invention of a venous stent or proving the value of ivus and cutting balloons or is there something else out there?

If your new irb proposal gets submitted and passed in the next two months, how soon would you be able to get some new research papers out there? Would you be able to publish on IVUS even as your new research was getting underway?

And this statement:

CCSVI is a condition in which the main cerebrospinal venous outflow routes are obstructed, leading to symptoms of fatigue, headaches, weakness and cognitive dysfunction.

This is how you'd separate out the symptoms of CCSVI from the symptoms of MS!

[Squeakycat]

Thank you for sharing with me. I am very sorry that i am stymied. Perhaps it is my calling to write primers and put on symposia

I would like to suggest that there is one other thing that is vital to everyone counting on CCSVI and for which you are uniquely qualified:

It seems clear that they MS Societies are now hellbent on proving that either no one has CCSVI or everyone has CCSVI.

Do you think it is possible to tweak your CCSVI Atlas project into something that provides irrefutable graphic proof of the existence of CCSVI in the people who are imaged and explains how these malformations are unique to CCSVI.

Somehow, we should be able to procure enough images from around the world, which while not formally part of an IRB-approved, random, double-blind, placebo-controlled study, are nevertheless persuasive based on their sheer numbers and consistent characteristics?

Actually, that is a question: if we could do this, would it be persuasive?

[JaneM]

in truth, we just do not know yet. We have not even had one research paper focused on the valve issues. We do not have proper equipment

By proper equipment, do you mean the invention of a venous stent or proving the value of ivus and cutting balloons or is there something else out there?

If your new irb proposal gets submitted and passed in the next two months, how soon would you be able to get some new research papers out there? Would you be able to publish on IVUS even as your new research was getting underway?

And this statement:

CCSVI is a condition in which the main cerebrospinal venous outflow routes are obstructed, leading to symptoms of fatigue, headaches, weakness and cognitive dysfunction.

This is how you'd separate out the symptoms of CCSVI from the symptoms of MS!

Can just CCSVI be studied? Techniques for treating just CCSVI be done and advanced? Why are we battling the neurologists? If they want to be asleep at the switch and not recognize the association with MS, let them. The symptoms that effect my daily life the strongest are those that match CCSVI. Does having a diagnosis of MS preclude me from being treated for all other diseases? If not then why am I being denied treatment for CCSVI?

[bonzo1986]

Dr. Sclafani,

Thank you for everything you are doing for the MS community.

My question is, and I'm sure it have been explained already, but I am terrible at finding those answers.

What does my Dr write on the referal to have the venogram done? The local radiologist wanted specific tests?

Thank you

[Cece]

If not then why am I being denied treatment for CCSVI?

Have you been denied? You are in NY, there are more ccsvi-friendly docs there than here in the Midwest! Maybe ask at the facebook ccsvi thread, I saw two people there yesterday offering to pm names of docs, one was in NY.

[JaneM]

If not then why am I being denied treatment for CCSVI?

Have you been denied? You are in NY, there are more ccsvi-friendly docs there than here in the Midwest! Maybe ask at the facebook ccsvi thread, I saw two people there yesterday offering to pm names of docs, one was in NY.

Thanks! I am in the process of finding another doc - but still upset that Dr. Sclafani won't be doing the procedure on me!

[1eye]

I too would like his work done on me. But I have an appointment soon that I gotta go to it looks like too late. That's OK, there are other very good IRs also following all of this. Brave men and women who don't take no guff from the neigh saying set.

[Cece]

This is why I reposted the ccsviliberation@gmail.com email yesterday...if people are (understandably) having to go elsewhere during this delay, then it might be an opportunity for others to hop on. I think when Dr. Sclafani does get an irb passed he is going to hit the ground running!

DrS did some educating yesterday over in this thread:
http://www.thisisms.com/ftopic-12500-60.html
Look halfway down the page for his explanation of the 'Distension of the carotid impression' slide from his Italy presentation.

[fogdweller]

in truth, we just do not know yet. We have not even had one research paper focused on the valve issues. We do not have proper equipment

By proper equipment, do you mean the invention of a venous stent or proving the value of ivus and cutting balloons or is there something else out there?

If your new irb proposal gets submitted and passed in the next two months, how soon would you be able to get some new research papers out there? Would you be able to publish on IVUS even as your new research was getting underway?

And this statement:

CCSVI is a condition in which the main cerebrospinal venous outflow routes are obstructed, leading to symptoms of fatigue, headaches, weakness and cognitive dysfunction.

This is how you'd separate out the symptoms of CCSVI from the symptoms of MS!

I am still baffled. Here is a condition with recognized symptoms and and easy procedure to correct it (angioplasty). How can the institutions ethically deny treatment?

I guess the two wild cards that are disputed are that the condition exists and that it is the cause of fatigue, headachews, weakness and cognitive dysfunction. Bad blood flow to the brain...who really doubts that this causes at least those symptoms? Why won't anyone around here treat me?

[Cece]

I am still baffled. Here is a condition with recognized symptoms and and easy procedure to correct it (angioplasty). How can the institutions ethically deny treatment?

I do not think these are generally recognised symptoms. The standard belief in the past has been that blood will find another way out and that these stenoses are not a concern. We are watching change in progress! It would be exciting if not for the damage to our brains and spinal cords while we wait.

[Lyon]

.