Just back from my trip to NYC. The meeting/lecture was not recorded by any media outlet nor by NYU. Dr. Zamboni was interviewed directly after the meeting by the local ABC affiliate. Prior to the meeting, Zamboni met with folks from the NMSS.
Dr. Salvi (Zamboni's neurologist was also in attendance). There were approximately 75 people in attendance (normally the Myelin Resource Group meetings have 20 people in attendance). Dr. John Reichert, Executive Vice President of Research from the NMSS; Dr. Jack Burks, Medical Director of MSAA; Dr Levine, NYU- an EAE researcher; Dr. Joe Herbert, Director of MS Center at NYU were in attendance. Name tags were not given out and some people did not identify themselves when asking questions .
The lecture covered much of the same information we have discussed at length here on TIMS. Zamboni had his presentation slides showing the relux of blood, the variances in pressure gradients, the cell damage caused by iron deposition, etc. -- really not any new information for us here on TIMS. But, for the audience, this was new information. The audience were neurological students, clinicians and doctors -- they do not study the vascular system. Zamboni repeated in his lecture, the neurologists and the vascular doctors need to learn from each other -- they need to study CCSVI together. There is an obvious disconnect between the two medical disciplines. Questions from the audience were neurological; Zamboni answered from a vascular perspective - I think this was frustrating to some. Dr. Joe Herbert said. “We need to rethink old prejudices”. With that in mind, the NYU center will be holding a weekend meeting for neurologists to learn and discuss CCSVI.
The Question and Answer period was very interesting as many are learning about flow of blood from the brain (or not from the brain) ; how blood reflux damages the cells, etc. The following are not exact quotes and I have summarized what Zamboni answered. Here are a few things I do not believe we have discussed on TIMS :
Q: How do you explain optic neuritis?
A: The blood from the skull is trying to escape – it goes to the orbit (eye)
Q: In your talk, you (Zamboni) said that EAE does not create the large vein malformations shown to be found in patients with MS. This may be true, but EAE does show similar small blood vessels as the MS patient. How do you explain this?
A: The autoimmune response in EAE does not start the process of vein malfunction; it cannot create a malformed vein. (Zamboni did not address the small blood vessels)
Q: Where do you draw the line between research results and testing and treating the MS population?
A: We need to have collaboration between the medical disciplines before going to the MS population. CCSVI should be considered as an additional therapy.
There were other questions from the floor, but I would be repeating information which has been discussed in Zamboni’s papers and here on TIMS
Zamboni mentioned there will be a new paper coming out on SWI and iron deposition
I was able to speak with Dr. Zamboni for about 10 minutes. He is very soft spoken—seems to be a gentle person. I thanked him for his dedication to MS, to his wife, and to his research. He thanked me and said I had given him a “gift”. We talked about my procedure at Stanford and also my daughter’s. Dr. Salvi asked me twice how I was feeling –“you feel good ?” Dr. Salvi has that “mad scientist” kind of look. I also spoke with Dr. Herbert from NYU – he is going to be following up with educational meetings for neurologists on CCSVI.
I spent quite some time with Dr. Jack Burks and I learned a great deal about the scientific process that is going to take place before CCSVI becomes a mainstream treatment. He understood my frustration, but then he reminded me about Tysabri being placed on the market early. On the positive side, we have more doctors today who know about CCSVI than we did five days ago – these are the doctors who went to Hamilton and to NYU. I am looking forward to viewing the video of the Hamilton discussion –
All in all an interesting and educational trip and I got to have lunch and enjoy a long chat with “bestadmom”. Gee, once we started talking it was like we had known each other for a long time and we just had a lot to catch up on. You TIMS members in the East are lucky to have her as a patient advocate. She is doing amazing work to further the cause of CCSVI.