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Originally Posted by Job13
Mark, can you be more specific? Which information is harmful misleading?  . |
Anastasia, that is a general statement about information on the internet. It was not specifically aimed at anything posted here. The patient community, like the medical community, continually discovers that what we thought we understood a year ago is not necessarily true. There is a steady stream of useful information that becomes misinformation as more knowledge is gained. There is also, flat out misinformation... sometimes mixed with good information... usually posted by people with good intentions. Often what one person considers to be harmful misinformation, another considers to be life-saving knowledge.
Quote:
Originally Posted by Job13
Do you disagree with a collapsed disc being a contraindication in the USA? (We know that anything goes in Germany).
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Yes, I disagree. As I understand it from working with many of the most experienced surgeons in the US and overseas, each case is different. I've seen many people with completely collapsed disc spaces that were still very easy to remobilize and ADR was implanted with great results. (me and my wife both fit this profile.) It's not about a demographic or a measurement... it's about your spine. It may be the case that with more total collapse, the risk of surgery induced leg pain may be greater... but there are so many factors in that, I don't think there is a hard and fast rule... and THE PATIENT gets to decide.
I don't agree that anything goes in Germany. Just as in the US, there are careful surgeons and less than careful surgeons. There are surgeons willing to take on the tough cases and push the envelope, and there are surgeons who will stop at every 'hard and fast' rule and never take on a tough case.
If someone with a totally collapsed disc gets ADR and fails, they may look at what I've written here as harmful misinformation. If that person has a wonderful result, they may view what you've posted in that way. This is why it is foolhardy to base a medical decision upon what is found on the internet. Hopefully, what we find will be useful information. Hopefully, it will cause us to ask more questions, seek more options and be very careful about our decisions.
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Originally Posted by Job13
It is impossible for the general public to be informed on this subject enough to make good decisions. We have met many ortho doctors who know basically nothing about ADR. They love to gawk at my xrays. Thus, if 5 surgeons will give you 8 answers as you say, then the ONLY thing you can trust is the trial data, FDA rules used on the trials, and common sense.
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I have discussed this at length with so many people (including Matt, and we don't agree on this.) Engineers and scientists tend to believe that the answer will be in the data. I disagree. I don't trust the data. On the last day of SAS in Miami, I was talking to Karin Buettner-Janz... she was seeking my input about the quality of the conference. As incoming president, she wants to make sure that SAS9 is even better than SAS8. I told her that I enjoy the presentations that present the clinical trial data less and less each year. (These are a huge percentage of the papers presented.) She asked me why. I told her, "Perhaps I'm becoming jaded. I just don't trust the data." Her reply was, "This is very wise."
So while some think that the answer will be in the data... I don't agree. Even if the answer is in the data... with success rates in the 80's, what does the data mean for the people who are on the wrong side of the equation? The useful information to glean from the data is the harsh reality of failed spine surgery. I believe that the success rates are overstated, that there are ways to manipulate the data, and that as long as the financial interests are so great, there will always be good reason to take it all with a grain of salt.
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Originally Posted by Job13
I have never seen a single web page that would show a failure case-all doctors, manufactures adverts are always showing only successes. (When I say "show", I mean to advertise on the first page).
Why not to advertise, lets say, 5 good outcomes and 5 bad to be fair? No one does it. Why? Because whoever advertising it has a financial interest in it. Everyone knows it but there are too many desperate people out there and they can swallow anything.
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Sadly, the only reason that we have access to any of this technology is because of the money that is made on it. I don't think we'll see companies advertising to discourage business. This is supposed to addressed with an informed consent process. Sadly, that part of the process is severely lacking. I have seen surgeons who go way out of their way to present the scary possibilities in very real terms. I believe that the problem is that patients think that 70, 80 or 90% is a slam dunk and the results are automatic. That is what I think the real value of these patient forums are... a place that may give patients the understanding that 80% is not a slam dunk. The potential poor outcome from ANY spine surgery is not something that belongs in the boilerplate on the informed consent document... it doesn't belong with all the 1/4 of 1% complications.
I'll hold a patient conference and look over a room with 70 spine patients in it and think that 80% success means that 14 people out of this small group will not be successful. This is why we must ask the questions, discover the options, do our homework and make informed decisions... our lives depend upon it. The patient ultimately chooses and the patient must deal with the outcome.