Danielle Rhemaume welcomed everyone to the evening. She organized everything for tonight, including a fabulous buffet spread from Jackie at The Pink Door, a gluten-free, healthy Italian restaurant (but they do cupcakes too!). Thank you so much!

Marie Rhodes did a fantastic overview of the research foundations for CCSVI well beyond the ground breaking work of Dr. Zamboni. If this is how her book will read, it will be a keeper. Her book, "CCSVI as the Cause of MS" will be a good investment.

The presentation from Dr. LaVor and Eric Feigenbutz (Arizona) followed and they both did an excellent job. Seeing the various Doppler images of webs, faulty valves, split veins, and malformed veins was very interesting. Eric, who does the scans, was trained at Buffaloi for the Zamboni protocol. They claim a success rate of FINDING CCSVI in 100% of MS patients. Dr. LaVor has been treating CCSVI for one year and uses a larger balloon size (he mentioned an 18mm). He doesn't use any stents at this time. He described the creative use of wires instead of cutting balloons to disrupt the valve. Eric is providing free Dopplar exams as part of this event.

Dr. McGuckin from Seattle followed. He lives in Phiadelphia and flies to Seattle on treatment days. He did three patients today. His clinic does not have Doppler capability annd do not believe in patients having an MRI/MRV ahead of time. He's seen some good reasults and one of his patients (? name) spoke about his improvement after two weeks. Patients are discharged after treatment and do not return to the clinic for follow up.

Dr. Hewett wasn't scheduled to speak, but filled in the time before Dr. Hubbard was scheduled to speak. He spoke about their clinic's experience treating 500 patients, including how they treat specalized cases involving the brain sinuses 2-3 a week. Dr. Hewett is one of the few radiologists trained directly by Dr. Mark Haacke and is collaborating with Dr. Haacke on current publications of CCSVI research.

I asked Dr. Hewett Andrea Pittman Casti's question later in the lounge: "I would like to know why they haven't been able to replicate Dr. Zamboni's finding regarding the azygos vein. Dr. Zamboni found that in 86% of people with spinal and cervical cord lesions that the azygos is involed. Since most of my damage is in all these places why was my azygos found to be clear? I have heard this with many others as well. Thanks!" Dr. Hewett strongly feels Andrea's azygos needs another evaluation. He said abnormalities in the azygos often don't show up during venography and, if there is clinical evidence supporting problems in this area, i.e., symptoms or spinal lesions, the vein needs to be evaluated using inflated balloons. When a balloon is partly inflated in a vein, it shows areas of concern needing full inflation. I hope this helps, Andrea!!

Dr. Hubbard Skyped in and was amazing. He, like he has done on so many other videos, told it like it is with neurologists and their reluctance to open their minds to accepting CCSVI as a bona fide contributor to MS. He said the problems with immune response to myelin breakdown is at the level of the venules in the brain, but the origin is with reflux in the jugular and other veins. He also thinks Zamboni's theories will be expanded one day to show more problems with the sinuses of the brain, but these issues haven't shown up yet with current assessment techniques in many cases. He's a big proponent of the fMRI, which takes pictures 1-2 seconds apart and his CCSVI registry, and encourages everyone to participate no matter where they were treated. He said the earlier a person can be treated the better, even if they are pre-diagnosis of MS (maybe having one attack of, say, ON, a single symptom like brain fog, and/or just one lesion) and feels cog fog, heat intolerance, and fatigue are vascular symptoms that improve right away and spasticity, paralysis, and sensory changes were neurological in origin and improve months to years after treatment. He said don't expect lesions to go away if you've had MS a long time and reiterated his belief that early treatmnet is vital. He has three IR's working in conjunction with the Hubbard Foundation and has done 209 patients so far. His clinic is actively involved now in following up with these patients at 1, 3, 6, and 12 months post treatment. His findings on the first 150 show 76% of patients improved.

I feel Dr. Hubbard addressed Steve Morgan's question, so I didn't ask it again. Steve's question was: "Being a fan of science, I know the placebo effect is real and powerful. In order to get the entire medical community on board, we need to have a double blinded study proving that these improvements are not placebo. Knowing just how good this procedure can be, what is the smallest number of shame procedures we need to preform to accomplish this? I'm thinking 10 sham,10 real." Dr. Hubbard said doctors write off subjective reports of improvement, like brain fog and fatigue, as placebo effects all the time with MS. He said neurologists didn't believe brain fog existed for years because it didn't fit their autoimmune model of MS -- there are no lesions causing brain fog that neurologists had found, therefore, it must be all in the patient's head. He said MS is unique among neurological diseases in that improvements are often written off as placebo, even though they don't know what many of the lesions are doing in terms of symptoms. He feels a randomly controlled, double blind study is a drug model and does not yet apply to CCSVI. He said you cannot sham treat a patient nor keep the interventionalist blind to whether they are treating, the requirements of such a study. He feels one day they could sham treat using different types of balloons or other nuances of treatment. For example, a treatment of a specific type and location of stenosis using only certain sizes of balloons could be compared with those using different sizes. He feels this will be in the future of CCSVI research.

The Q&A followed -- let me know if there was something you didn't hear clearly! This evening was jam packed from start to finish. Thanks to all the organizers (I only know of Danielle and Kathleen, but I know Pam Wood and many others were there helping too), the Pink Door (yumm), and all the doctors who so generously gave us their time and expertise. Thanks Dr. Hewett for staying up so late afterwards back at the hotel and answering all our questions.

~Sandra  http://www.facebook.com/note.php?note_id=493966917733&id=182832983940