vertebral artery insufficiency - that was mentioned at ISET too
Dr Dake referred to venoplasty as the "tarnished gold standard" (here here), one reason being the variance with position respiration, and muscle contraction.
Dr. Cumming was just posting ivus images illustrating this:www.thisisms.com/ftopicp-164981.html#164981
wish I was there
Went to bed at 11 pm last night, up at 6, out the door with suit and tie at 6:30, drove 102 miles, got there 8ish, did the conference, went to my brother's house nearby, then we went to a casino, then back to his house (500 bucks richer which paid for the books/weekend/gas!), then another 100 miles home. It's really REALLY nice having fixed veins. Like to give my own birdseye view while it's all still fresh.
I can't wait for you guys to get the Hubbard videos, Devon and this other guy were doing the taping on a very nice looking camera so the shots should come out better than a handheld. I'll try to get you zeroed in on some of the good stuff when it gets posted.
First of all, I really and truly hope that each and every one of you comes to some realization, that all this talk about money this and conflict of interest that sounds good on internet message board posts, but does not even skim the surface of what is really going on.
What is really going on, from my assessment and my looking people in the eye and talking to them personally, from Sandy Mcdonald to Kirsty Duncan, to Eric Feigenbutz from AZ doppler, to every one of the Hubbards, is thus:
1. You cannot fake passion. There was enough of it going around in that room to make Fabio himself blush. (bad analogy?
2. For those who have not had the pleasure of meeting all those Dr's, representatives, authors, family members etc. , well, I can tell you this with the utmost assurance, these people are FIGHTING for you all, the untreated, those with little hope of any other avenue of redress r.e. their disease. They are on fire and it's a raging inferno. THAT cannot be faked.
While some (Dr. Burks for instance) are demanding a certain level of scientific proof (fair enough), the direction is still forward, and it's a call to charge into the fray, not spectate from the sidelines hoping someone will take care of things eventually, for instance, at the end in the hallway over snacks and drinks I finally got to talk to Arlene and her daughter Alexandra, at which point ingressed Eric from AZ doppler, who then got to talking with Alexandra for the first time, and they were instantly huddling over how to get funding, and how to get Siemens on board with the "we're using your machines but there's these other guys over here" angle, and just like that they developed a brilliant plan to get something moving in that direction. That Alexandra is one smart cookie. The Hubbards need funding, it costs a substantial sum of money to keep a 3T machine going all month long. They would LOVE to have a study and scan/treat patients for free and/or have insurance pay for it all. Sadly, that is not the case, and they've put a lot on the line to get things where they are right now. It's the scanning that's the tough part insurance wise, the Haacke protocol is 3.5k and they offer a stripped down version for 2.5k. I know we'd all love to just do a quickie ultrasound and go straight to the op room, but that's the program for now. Doppler UT machines aren't cheap. MRV's for as much as they are maligned on the internet, seemed to be not quite as much so in this group, overall from what I heard from the various speakers, it's just a tool, nothing more, nothing less.
I talked to the Hubbards and anyone else that would listen about my Dr's assistant, who I had the pleasure of meeting on Friday (finally!). Doc had told me about her, as her daughter has MS and he's been funneling my info/results/video and all the papers and info I give him to her, and his colleagues. What an incredible lady, she's well into her 80's, helps the Dr. out with billing and such, and has (get this), twin 60 year old daughters, both with MS for about the past 15 years. Problem is, they don't have insurance, but I'm thinking if I can raise enough money somehow or somehow get them at least scanned, UT or whatever, what Dr. wouldn't jump at the chance to check this out? From what the Mom was telling me, they seem to have all the classic CCSVI/MS stuff going on. So that's how I got the pricing on the scans, AZ doppler does it for 540.00. Sigh. So much need out there. What to do?
As far as the presentations go, got 5 pages of notes and hated to write those because things moved so fast I had to pick what I wanted to miss out on as I wrote. I’ll come back tomorrow and refer to my notes but it’s just some highlights, many of the presentations plain old skipped over the boilerplate stuff, which 2 years ago would have everyone on seat’s edge, whoda thunk it?
I will mention that Dr. Burks presentation was buffeted a wee bit by Sandy Mcdonald, and that’s one part of the video you do not want to miss, as Dr. Burks couldn’t pass up talking about the Costa Rica event which has been covered quite thoroughly before, except the problem was, he was using internet generated references and news article reporting to illustrate his point, Sandy however raised his hand and asked how he knew that was true, whether he knew the family, or the treating Dr’s in Canada etc etc., because he (Sandy) did, and had spoken personally with the affected parties, and proceeded to , shall we say, “set the record straight”. Mind you, at the time, I had no idea whatsoever who this firey , passionate man was that had popped his hand up for the Q&A portion of Dr. Burks presentation, so afterwards I walked over and thanked him for setting the record straight, and he insisted it was about reporting the facts from a standpoint of having investigated thoroughly, instead of repeating things others said on the internet. He really did take Dr. Burks to task. When I asked his name, then it was like, ‘NO WAY’! lol. You mean THE Sandy Mcdonald? Sorry, I don’t know all these people by sight, but sure as heck know the names. We need to replicate people like him big time.
Funny aside: I had planned on getting 10 copies of Marie's book, as it would be easier than ordering online and all that. I took five at the beginning, but Marie could only carry so many on the plane and I was hesitant to snap up copies that other's there would want to walk out with, so at the end of the night it seemed everyone that wanted one had one so I got the last 4 copies from her and was bouncing around talking to all these brilliant minds, but then one guy (a patient) walked up to Marie to get a copy so I sold him one of mine (haha), so now I had 3, then in the course of talking to Dr. Mcdonald and Dr. Bill Code (another brilliant man), turns out they wanted copies too, so I sold them 2 out of my 3 lol. It was comical, I didn't have change for Sandy, so Bill worked it out so he owed Sandy and gave me the rest. Dr. Code asked some great questions during the sessions too. Needless to say, I sold almost as many copies as Marie did haha. I showed her my lone book at the end and told her I sold the other 3 for 50 bucks a pop and made a profit. (jk of course).
Yeah the vertebral artery insufficiency was just mentioned as part of explaining why some neuros may be a bit leery of "oh now it's the veins huh?" Doesn't excuse some of the dismissive hand waves coming from that sector, as Dr. Burks stated, the crowd there today was easy to deal with compared with what he faces talking to his Neuro peers. I don't envy his position at all.
There was plenty of "we need more studies" talk, a lot of stuff it just felt like the same rehash since 2009. While those on the board here may think we've got all the cutting edge stuff going on 24/7, the fact is the rest of the world doesn't, and we aren't much further than we were in 2009, sure with brilliant minds like Dr. S at the helm and Dr. Cummings and Dr. Dake and the rest of them, it's going in the right direction, but this leviathan called the Medical Establishment does NOT pivot on a dime, and all the bluster and protests and initial findings and imaging studies in the world cannot surmount the fact that we are still, 2 years later, so lacking in critical double blinded placebo controlled, meaty and weighty treatment studies that will put some serious scientific teeth into this thing and get it the airplay it deserves besides the Globe and Mail propaganda which passes for rigorous reporting.
Luckily, at least for now, the patient in need still has options, they may not be palatable nor optimal, but there's something somewhere that can be done. It really comes down to "what are your resources?". I'm an expert on not having any of those, trust me, been there, done that and only with the help of others did I even have a chance of getting to Palo Alto in 8/09. I don't have a bully pulpit, or following, or vast resources, or much time, but want to keep learning and do what I can to pay it backwards. Hopefully others have the same thought that have been "liberated" from their MS prisons, come alongside others, be their cane or walker or mouthpiece , wheelchair or friend, do what you can, however you can do it, that level of Multiplication will overcome any attempts by others to Divide and conquer. Don't ever assume billion dollar companies have your best interests at heart, or charities for that matter, make them prove it. Don't trust any of them as far as you can throw them, they don't give refunds when 500k worth of drugs later, you are immobile and stuck in a bed....