She's been reporting on this since the git go, very noncomittal either way, but her articles invariably lead to the drive by commentators which are then highlighted and used for future discussion, as if they represent the whole?
My neuro had no problem with it, I had no problem with my neuro, there are plenty of us both neuros, and patients, out there with similiar (if not better) stories, but that doesn't make good blog articles either, I wonder where she gets her information to arrive at such summations? From her own blog answers? From a questionnaire submitted to Dr's and patients? No, from answers on her own blog, which represent the smallest %'s of the whole, and I proffer, are not representative of the MS community to begin with.
Makes good blog, but not so good factual representation, if there can be such a thing when discussing patient/Dr. relationships.
My neuro took all my info, ran with the ball on his own, and as far as I know is staying on top of things, but I haven't seen him in so long it's hard to gauge, I will see him next month when my ins. comes back, and will predict right now, he will have the negative studies roll off the tongue in an instant, which is okay I suppose, but I'll be his own personal study, and I KNOW the very first question, which he asks every visit for the past 3 years, will be, "have you gone back to work yet?". He knows how difficult it was for me previously. Now, he will find out how incredibly well I am doing and on a consitent, day to day basis, week after week, month after month, and I will be happy to share this with him, as I've shared all my MRI's, MRV's, path reports, Dr. reports from Dake, etc etc. Maybe we'll do another EVP for kicks, so he can see if that is unchanged or better, the one post-op 6 months showed stable, and even that excited him. Since I've had no ON symptoms, no MS symptoms, and all that, it should show baseline or perhaps improvement. Def. no placebo involved in that test after all.
She's alright, but the noncomittal sideliners are also for the most part, out of touch with what is going on with the majority on a daily basis. She seriously, and I mean this with all sincerity, get off the blog and interact with real patients across the spectrum, and I mean specifically CCSVI patients, blog postings, internet ramblings, hardly a sturdy cross section.
She's heard from a "couple of neurologists?" I've talked to no less than 15 Dr's PERSONALLY since learning about this, just by word of mouth, friend of friend, you name it. Bloggers (and this is a blog people, not a medical advice column) exist to replicate themselves with audience participation schemes and questions that elicit answers, unfortunately, the negative experiences are sure to posted, with all the rest of us with not a lot of zing to report, aren't cruising the net looking for places to laud our experiences , it's just the nature of things.
Turning blogs into de facto thumbnail sketch scientific studies is a surefire way to get half the info, half right, half of the time, regardless of the original intentions, which with her, I am positive are nothing but pure.
RRMS Dx'd 2007, first episode 2004. Bilateral stent placement, 3 on left, 1 stent on right, at Stanford August 2009. Watch my operation video: http://www.youtube.com/watch?v=cwc6QlLVtko
, Virtually symptom free since, no relap