Wonderful post from Arlene Hubbard on the conference...NOTE: cortical blood flow normalizes after angioplasty. This is the key. Read note on gray matter to learn more. Thank you Hubbards, thank you to all of the doctors looking at CCSVI. To see all the videos for yourself----
http://www.youtube.com/watch?v=DhsuEoG5TJQ&feature=relatedHubbard Foundation First Annual CCSVI conference 5/14/11 Yesterday was an extraordinary experience for the entire Hubbard clan. Besides loving my family unconditionally I also admire and respect each member individually. I would like to thank my son,Devin, for his continued support and commitment to putting the pieces of this puzzle together. In addition he and Phil Carlson, our office manager and "second son", video taped the event and uploaded it to you tube. I can't say enough about my husband,David, my hero who has taken a concept which made him initially skeptical and has now embraced it as his cause. His ability to teach,sometimes very difficult science truly amazes me. Last but not least, the star of this event, Alexandra(Lexi), my daughter whose tireless efforts created a phenomenal event. Lexi did EVERYTHING....all communications with the speakers, creating handouts, arranging the facility, web site information, requesting Gluten/Dairy free breakfast and lunch, introducing all the speakers, managing all the millions of details that occur last minute which is part of creating a successful conference. The more I know my family the more I like them! I would also like to thank Selena and Laura for volunteering to man the registration desk. It was so hectic initially I was amazed they were able to make everything go smoothly! I want to also thank,Ann Boroch naturopath extrodinaire, who brought signed copies of the new edition of her book Healing Multiple Sclerosis(it now discusses a completely gluten free diet) and her book The Candida Cure. Marie Rhodes brought what I consider the CCSVI bible...a must read for every one with MS and their families and friends...was at the event with signed copies of CCSVI as the Cause of Multiple. Sclerosis. She is an inspiration to us all. Thank you to all our presenters, Kirsty Duncan,Jack Burks MD, Donald Ponec MD, Michael Dake MD, Mark Haacke PhD, Justin Gooding MD, Richard Saxon MD, Giedrius Buracas MD, David Hubbard MD. And thank you to all the pw MS and their family and friends who attended and who keep us motivated to do a better job each and every day. Our endeavors are for you and of course, my son ,dear friends. So keep challenging us...you are our best teachers. Thank you all! Now to the event! First let me give you a piece of interesting information. We invited EVERY neurologist in San Diego. Our conference information was in the journal Neurology. Besides my husband and Dr Burks NO NEUROLOGIST attended. Oh....I made a mistake...a neurologist did show up, peeked his head in the door, told one of our participants tell Dr Hubbard I was here but did not attend! This goes on the heals of Dr Burks presentation of a Neuro review where he explained the neurologists point of view. He suggested we need data to prove CCSVI and we need more studies. He also said he wished more neurologists would show an interest. Well.....not one neuro showed an interest in gaining more information by attending our conference which was created by a neurologist....David Hubbard! Need I say more. I have energy for challenges but I do not have energy for apathetic individuals who keep asking us for more but won't make any attempts to learn. The next day Dr Burks told me neuros don't want to learn more they want us to prove more! Gotta love the politics! No w on to the rest of the event! Kirsty Duncan is an amazing woman and the most devoted advocate for MSers, especially in Canada. It's difficult to not want to get up and cheer when she presents an impassioned plea for her citizens. She discussed the Willful Blindness of the political and neurological community in Canada and the absolute need for testing, and treatment and at the very least...follow up care for individuals receiving venous angioplasty elsewhere. Jack Burks,neurologist! What a gutsy guy. He was brave, walking in to an audience of people like me(not sure about why neuros are so resistant to CCSVI theory and treatment). He attempted to explain about past hopes in the MS community with regard to treatments that did not pan out. He did say it was more difficult speaking with neurologists than with IR's about CCSVI(I wonder why!). He discussed Dr Zamboni's pilot study results with some skepticism but thought it was encouraging and further research is needed. He did say when he sees a pwMS who wants venoplasty he doesn't "fire" them (like other neuros have done) he wishes them good luck and tells them he will continue to be their doc. I thought this was important. Skepticism is one thing. "Firing" a patient because they are not taking your advice is something else. How many patients would be fired by their docs if they were told to stop smoking and didn't ;or told to lose weight and didn't? Don Ponec Efficacy of venoplasty in MS(our study)... He presented the Hubbard Institute data on 265 patients. Clinical improvement at 1 and 6 months after treatment were statistically significant at the p < 0.01 level. 36.1% were markedly improved ,40.5% improved, 13.9%unchanged,8.2 % worse 1.3%markedly worse. Level of disability, MS subcategories, age and gender were not predictors of success. Michael Dake was our Key note speaker...CCSVIand MS where do we go from here? He presented the vascular theory of MS and emphasized that FLOW MATTERS as disturbed flow promotes inflammation. He recommends looking at flow through MR (we are in the process of getting ready to test Dr Dake's flow test at our facility). He encourages us to move forward with more studies. He also discussed the difficulty IR's will have in standardizing treatment as there are numerous variations in vein architecture.(this was discussed throughout the conference). Dr Haacke MS as a vascular disease current evidence for CCSVI The next area to study is perfusion and blood volume. There is less oxygen utilized in white matter when under MS stress. Justin Gooding...CCSVI venography and intervention He discussed the history of CCSVI and the pathophysiology...delayed perfusion, inflammation, iron deposition. He uses the MRV flow data as a map to localize where he is going during the venoplasty. This was discussed by others as being essential. Sometimes the IR cannot detect a problem but the MR flow data is showing a problem the IR will follow the map of the flow and treat an area not detected with venography. Richard Saxon...Catheter approaches Dr Saxon discussed treatment options for the IR but emphasized "first do no harm". He talked about difficulty of standardization. Most restenosis happens in the internal jugulars. He discussed looking at using longer balloons. He discussed fibrin/scarring of veins after venoplasty. Like Dr Gooding he discussed using the MR flow data for guidance. He criticized people claiming that they had 100% success with no restenosis and medical tourism. Giedrius Buracas...Recovery of BOLD responses in MS after angioplasty...This is our fMRI study. Hmmm? How do I summarize? Every MS patient tested pre and post angioplasty on David's tell time test had significant improvement in cortical blood flow after the procedure. Theer cortical blood flow NORMALIZED after venoplasty. When Giedrius, a neuroscientist at UcSD was asked(by Dr Hubbard) if this could possibly be placebo.....he unequivocally said NO!!!!! David Hubbard Neurovenous hypothesis and care...Dr Hubbard compared the the autoimmune theory( says it is not true) to Dr Zamboni's theory of red blood cells leaving the venules and causing and immune response and his theory of the oligodenricytes dying first causing local macrophages to scavenge, the myelin unraveling, and the immune system activation after inflammation occurs. He reviewed studies that damage to the oligodenricytes might be caused by poor perfusion and diffusion. David reviewed an article about the effects of zonulin on both the gut and BBB endothelium and said everyone should be on a gluten free diet. He mentioned an article in Lancet recommending that pwMS should be taking 5,000iu-10,000 iu of vitamin D3 daily. There was a question and answer period followed by wine and appetizers. It was a very informative day and I had wonderful interactions with so many people! I loved meeting people with whom I've been facebooking and e-mailing for months. You are all so dear to me. Next year I hope to see more of you in San Diego! Hugs, Arlene There was a question and answer period and glu