QUOTE (edlee @ Apr 29 2009, 01:02 PM)

sorry if I offended you by what I said, Jax. And no, I don't think you are being a dick for stating your opinion.
I admit that I haven't done the research that you seem to have done, and will further admit to ignorance in what any specific clinic or hospital may have in the way of equipment or expertise.
What you saw above is my knee jerk reaction to anyone who thinks spending a lot of money and traveling to other countries is going to give them a significantly better chance of a "cure",, or even of improvement.
I rank those chances at somewhere below those of making "$5000 a month, just using your own computer" as seen in any one of a hundred different info-mercials on television, any night of the week.
Do I think that either is possible,, disregarding the percentage of success???? Wellllll, it's possible. Would I reccomend, to anyone, spending any money on either one??? Wellll,,, not in this lifetime,, not if I was fond of them, anyway.
And yes,,, I do feel that we have in this country, the equipment, the experise, and the incentive, to do the same things that are being tried elsewhere. And I further believe that it is here, that the best chance for SAFE AND EFFECTIVE treatment for everyone, will be first implemented.
As much denigration as one hears , here , about the FDA,, they do their job,, which is, after all, to hold the "snake oil salesmen" in check.
Maybe I'm starting to show my age,,, It seems that the older I get, the less likely I am to believe anything. My experience has taught me that this old adage is true more often than not. " Don't believe anything you read,, and only half of what you see." While this is close to an absolute in dealing with politics, it is apt in the rest of life, as well.
I hope, Jax, that you will excuse my attempts to poke holes in opinions I doubt, as I will happily accept your doing the same.
The truth can take the poking,, and the false needs to be poked.
ed
It's interesting that the original post is from the wife of the man wanting to have the procedure, and she asks for advice and says she's "scared sick." Then you come in and start bashing her and bashing on anything that isn't done in the US. I believe I remember you saying in one other thread that
"Even if you are rich,,,,, if it isn't in the US or UK,,, I wouldn't reccomend it." That's a rather presumptuous statement, considering your lack of knowledge regarding the treatments and facilities elsewhere.
Some of the treatments done in other countries
are safe and effective. There are two treatments in particular that have gained quite a bit of ground over the past several years. I have personally seen some of the results of the implantation of adult autologous stem cells done in Russia. I assure you that the pictures and firsthand accounts have made me aware of the safety and effectiveness of that particular treatment. Dr. Carlos Lima (in Lisbon, Portugal) has been safely and effectively performing the Olfactory Mucosa Autograft since 2003 (Clinical study ran from 2001-2003.) The official clinical study report is available at
http://www.apssci.org/pdf/olfactory.pdf. You might want to take a look at it before you start mouthing about how ineffective the treatments are. The improvements are documented.
Don't get me wrong, there are some shady "doctors" out there (including right here in the US. I know. One of the shady doctors was my attending in "rehab."), and there are some who are trying to use the wrong methods for SCI (including this Kao). That doesn't mean that ALL of the doctors who are treating SCI are using methods that are unsafe or ineffective though.
As for disregarding the percentage of success: That's part of the problem. You disregard the percentage of success, which means you don't see just how successful these treatments are. Of course, you may define success as "walking out of the hospital a few hours post-op," but to most, I'm sure the definition is a bit different. It's not a slim chance at improvement, it's a really good chance of at least some functional and sensory recovery, even if not walking. Wouldn't you have loved to have normal (or at least better) bowel/bladder/sexual function back at some point since your injury? I know I would, and I'm sure I'm not the only one here who would like to do so. I've actually had some tell me that very thing.
To me, and to several others, it's not just about walking again (though that would be great), but the other things that are much more inconvenient than lack of leg use. One of the 2 people I met that have been to Russia is an incomplete quad several years out of injury, and is regaining hand function. Does that not count as improvement to you ed? I think most of the quads here would agree that better (or in some cases,
any) hand function would be a great improvement. Now, maybe I'm young and naive, but where I come from, regaining use of anything the injury took would be considered at least some improvement. A good bit of that improvement is coming from LOTS of other places, but not here.
In our country, we have NO chance of utilizing the already-proven, safe and effective treatments, unless of course, the major pharmaceutical companies are going to be assured of their incredibly high profit from them. That is why the FDA is here: to make sure that the major pharmaceutical companies make their hellacious profits. Hell, some of the stuff that IS FDA approved is nothing more than the "snake oil" as you call it. The FDA doesn't deserve credit for anything but being another part of the political profit wheel. I wonder how much kickback they're getting from big pharmaceutical companies for their recent ruling on autologous stem cells...
What you feel doesn't change facts. Just because you
feel that we have the best chance here for safe and effective treatments to be implemented, doesn't change the
fact that safe and effective treatments have already been implemented elsewhere. And having the
opinion that a treatment is ineffective and/or unsafe doesn't change the
fact that it is actually safe and effective. Again, fact holds more weight.
I hope that you will excuse my poking holes in opinions and feelings with facts. I understand that you haven't had the opportunity to meet someone or know somebody that has had returns from any of these procedures, and I get that you're skeptical (I was too until I started researching). What I don't get is how you can still think that the US is the only place that has a chance of doing something safely and effectively, when that something has
already been done safely and effectively in several other countries. Can you please fill me in as to where that conclusion comes from? Have you been under a rock for the last decade?
Our govt can't fund the research for treatments that are already proven. That wouldn't keep the researchers employed, and that wouldn't keep Pfizer happy. Instead, they throw a whole shitload of money at research that will lead nowhere to keep the researchers busy, the campaign financiers happy, and the public deceived into thinking our govt actually gives a shit about us and is doing the right thing. Some of us have really stuck to that old adage about politics, and do the research for ourselves to find out just how much our govt is lying to us, and just how far up shit creek we really are.