We do have a responsibility to each other. Whether they should or shouldn't, people are using information found here and on other sites to make major medical decisions and they are not doing it in conjunction with a local personal doctor.
It is why Joan has repeated her "Go Local" message, people can do with it as they like but it's an important message to get out there even when it's a painful message because there is no local option.
The worst outcomes have all involved stents.
I'm curious who these people are, have they come forward to say "I read a news article, read a few blogs and booked an appointment, had no idea of the warnings, though they be quite easily found in adequate proportions from one end of the internet to the other?
I'm sorry, maybe I give people too much credit for being intelligent human beings, whether or not they belong to this site?
The go local message is being replaced with one much more dangerous, "avoid stents, just do that, and you'll be safe". Don't worry about operator dependent variances, just keep away from stents and you'll be fine, is the end message. "Go local" gets lost in the noise. Don't stress patient education because there's too much work to be done scaring people away from stents.
Now, if you have a genius like our good Dr. S looking after you, who is constantly updating his knowledge base and improving his skill set, along with keeping in touch with fellow researchers, then there's not much more one can do in my opinion. Would that all our medical professionals be as tenacious and unrelenting in the pursuit of perfection.
Sadly, they are not, and while it may make some feel good to sound the clarion and sound it loud and frequently, there are MANY Dr's and clinics around the world, who will say, "ballooning special this Friday only".
That's the message that gets lost in all these faulty news articles and blogs, we've gone from talking about CCSVI in relation to MS, and changed it to "just keep away from stents", as if the rest just kinda works itself out. Where's all the plugged up jugular veins post angio minus stents that we hear so little about? Why don't those get headlines too? There's at least one on this very site.
I think the reason is, is it gives us something to clearly and definitively point the finger at. If someone has an issue and happened to have a stent, well there you go, stents are too risky, avoid at all costs, we have our "bad guy" if you will. Keep the lack of aftercare as a footnote, or even what patients SHOULD be asking themselves before considering such a creature. That part NEVER gets into the articles or diatribes. Do people even understand that just about any vessel you injure, be it angioplasty or stenting, should be (from what I understand) at a minimum treated with anti-coagulants and/or blood thinners, and those questions should be asked and satisfactory answers given before even considering a surgical intervention? That people vary significantly in their clotting factors, and that one size does not fit all when it comes to aftercare in this regards? IOW you may be fine, I may be not, I may clot at the slightest provocation or injury (such as what occurs during the expansion of any device in a vein, I'm sure we can all freely agree that endothelial lining is being torn using either method without much debate), point being that creating two diametric extremes is in my opinion, the worst possible thing for the neophyte, newbie, newly turned on to CCSVI, whatever you like to call them. "If not A, then B", each with a simplistic and underreaching definition, which makes for good soundbites I guess, but doesn't do much to effect stimulation of the "wait, I need to slow down, there's more here than meets the eye" part of the human brain.
So once again, I proffer that the media in all it's abilities to do good, does more harm, by presenting the juicy parts, and leaving out much of anything that could be truly helpful on a broad basis. They could end every one of those articles on our dear fallen Costa Rican tourist with say an interview with a real doctor, explaining specifically the hows and whys of the role blood thinners or lack thereof played a part, just for instance, not that I know anything about thinners or stents. They could do that, quite easily, I'm sure there are dozens of medical professionals that would jump at the chance.
In other words, a little balance, a little education, a little responsibility other than dire warnings, all fused together with other patients who *THINK?* something is amiss, but aren't sure and haven't been even looked at for follow up? Even conjecture now is news. Go figure.
It really has nothing to do with how nice we think media people are, or how kind of them to put this to the fore, if what you say is true, if you really believe that people do that, as a result of the media stories and a few message boards (which they were led to by the media in the first place), if that has really resulted in people jumping on planes to fly to foreign countries to be treated by God knows who for that much money, then I guess the media can help clean up some of the mess they created, sounds fair doesn't it?
I know they won't, as "10 things you should know before booking an overseas medical trip for CCSVI intervention" is not nearly as much a grabber as "man dies after experimental MS treatment".
They use people, and toss the leftovers out the window. They, the corporate media, the business, do NOT care about our health. At all. Only how much ratings it will generate.
There are no easy answers, but I'm sure that few of them will ever come from the media.
I'm personally disgusted that someone with the appropriate message (say um, Joan?) and balance wasn't thrust to the fore long ago.
I've said it before, loud and clear, and will say it again, don't trust the media, they have a distinctly divergent purpose from ours and it's not good health.