It's done....I'm exhausted. But amazed. Right hand may never write again (only kidding) It was incredible to have all those great minds in one room...and you could tell, folks were floored by what was being presented. I was not invited to the press conference, so I cannot tell you who was in attendance, but I was given a complete press packet and I'll type it up with my 40 pages of notes later.....
I just wanted to say how much I appreciate Dr. Paolo Zamboni, as a man and a doctor. I don't know how much to tell, because I want to respect his privacy as an individual, but suffice it to say, this man understands suffering. His wife has MS and his body is affected by some sort of palsy...he has trouble walking. His mission is one of healing, and he has been lining up his research and publishing papers one by one every year or so, to make the case for CCSVI. He has reached out to neurologists and vascular docs and imaging designers and technicians, because he realizes that cooperation is key. He has very little ego in all of this, and is gratified to see research coming in from all different areas.
It was also a pleasure meeting Dr. Marian Simka- a true gentleman and a scholar. He was fresh from a visit in Monaco, and it was wonderful to spend time with him and get to know him. Dr. F.A. Schelling is a gentle intellectual giant, a brilliant man with the courage of his convictions. He still has many questions about CCSVI, and does not think the current model answers all of his observations, but he is hopeful future research will delve deeper into the mystery of venous reflux. The Ferrera team was so kind and fun and open to a crazy wife from California...I felt embraced by this community, even though much of the research (especially the DNA research) flew above my head.
I will try my best to make sense of the notes. The entire symposium was recorded, and I assume copies will be made available in the future. Much of it we already know here at TIMS, like the Zamboni papers and the endovascular research...and I was disappointed that there were no journal papers handed out. There will be publications in the coming months...this was a preliminary "what's to come." There were many questions and some differing opinions, but all was handled with respect....I just want to say that the doctors I saw today are much better behaved at questioning than some folks online here....they understand the nuance of "tone". It is possible to question people without being nasty or deriding them...and yes, debate is very important, but so is respect. I was impressed by that today. Even when people had completely different opinions (venous stenting was one such topic)...everyone spoke with respect.
I was not able to get a list of who was in attendance at the symposium- but I will try to secure that. There is a concordance of all the doctors looking at CCSVI..they are all finding it in all MS patients. 100%. I know this is a sticking point for many here...and some docs brought it up too. But it's a fact. Dr. Zamboni encouraged others to go home and test their MS patients, to find out for themselves. His doppler protocol has been taught to the doctors at Jacobs, and will be shared internationally.
So...I'm going to get to work. Might go out to dinner with Dr. D...we'll see. I sure learned alot today, and I feel even more strongly that MS patients and their loved ones need to bang on doors, rattle the cages, and wake up the neurological community. Status quo is no longer acceptable. No one will say "This is IT." But everyone said "This is extremely important, and we cannot not ignore it."
Some neurologists may see this as a threat to their MS practice- but I saw some really smart, confidant neuros look at it as a challenge they want to take on and understand. And that gave me great hope.
to be continued....
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09