Choosing ADR or fusion

[Job13]

RIP Freedom of Speech

[mmglobal]

I think that everyone understands that the info presented here is good for what it's worth... stuff posted on the internet. Some items are absolute nuggets of gold, and some are harmful misinformation. It's up to the reader to look at the information available and take what good they can... and hopefully contribute in a manner that will benefit the community. That's the internet at it's best. I credit the braintalk forum with saving my life... had I not found them I would have had a 2-level BAK fusion with no posterior instrumentation. Because of the info I discovered there, I came to understand that I was responsible for learning what I could to make informed decisions about my care.

This is a great discussion and I'm glad we are having it because it's a microcosm of what we face as patients... go to 5 doctors and get 8 different opinions. All are experts... how do we decide? Unfortunately, too many of us are naive about the situation and often are on the wrong side of failed spine surgery before we understand that we need to take responsibility for our care, be good consumers and make informed decisions. We grew up in a world in which we... get sick... go to the doctor... do what he says... and we expect to get better.

I've seen too many people who are abandoned by their health care providers and told that they have no options other than chronic pain and disability... only to discover that they do have options. Some will try those options and fail, but many will also succeed. However, when we are empowered to ask the right questions and seek the right information... WE get to make the decisions. WE get to take the risk.

To some people, this will sound like doctor shopping and recognize that in some situations, patients are looking for a doctor that will tell them what they want to hear... and that may be the worst possible scenario... going until you find a doctor who is willing to do something that all the other doctors know is out of bounds. In other cases it results in finding a doctor willing to take on the difficult cases who actually knows that the patient who looks out of bounds stands a reasonable chance of success. If the patient is successful, the doctor is a genius. If not, the doctor doesn't look so hot. Look at the flute players case... www.fluteguy.com and on the GPN story page (BradleyL). He's more than 2 years out now, having a normal life. (Unfortunately, the trip to Miami made it so I couldn't attend the release party for his new CD. He's doing great.) His case was way out of bounds and he went to many doctors and got many opinions. All were against the surgery that was ultimately performed... except one. The point is that the PATIENT gets to decide. They get to take the risks. They have to live with the results.

Get multiple opinions. Don't take anything at face value. Find a way to separate the marketing spin and competing interests from the information that is really relevant to your decision. In many cases, this is an impossible task. Even though it's overwhelming and we may ultimately have to make a decision realizing that certain knowledge of the best course is not something we can achieve... we still have to try... because we take the risk... we have to live with the results. We also must understand that even if we do have certain knowledge of the best course to take... we still may fail.

Some rules are there to protect the patients from surgeons of less than average ability, yet they keep others from getting the best care from better surgeons. Some rules are there to protect the manufacturer from liability. It's a shame that spine surgery isn't automatic and that there is so much that is poorly understood, but it is. Do your homework... make informed decisions.

Mark

[ans]

It is confusing!

Reminds me of the movie "Rashomon" re: differing viewpoints.

Thus, if I have less than 5mm disc space, ADR is contradicted. I've never read this before - thanks.

[Job13]

RIP Freedom of Speech

[dshobbies]

Job13,

If anything, our medical community is known for it's secrecy. Finding a doctor today that is more concerned with a patient's welfare instead of their own self serving needs is rare today, especially for specialties.

I was amazed that my neuro, knowing that other procedures existed, failed to tell me about them because he didn't perform them and because it had not yet passed FDA trials, was not legally bound. However, he was more than happy to perform another diso/lami knowing, yet failing to tell me, that the success rate was drastically reduced and would more than likely lead to further DDD. This is only 1 example of why it is so necessary for patients to become educated, not to believe everything they're told, and get more than 1opinion.

Even on this forum, some sing the praises of doctors with whom others have had negative experiences. Even medications, designed to help have been known to kill and only after the fact does the truth come out that these dangers were known all along. Manufacturing warnings are meant more to protect the manufacturer than the public. In today's day, legalities and rightousness have little to do with each other.

Bottom line, read, learn, ask questions, make up your own mind. It's your body, your suffering and your possible relief.

[Diane]

One of the interesting exchanges I observed at SAS in Miami was during a Q&A panel discussion after one of the lumbar ADR session. A surgeon came up to the microphone and while framing a question about retrograde ejaculation said something like, "What do you tell your patients regarding retrograde ejaculation? Do you have them use a sperm bank? My experience is that if you tell them a 2% chance exists, they will NOT believe it can happen to them. I tell them, 'What if you are in the 2%'?" This was more of a lesson for the audience than a question. He was trying to let everyone know that they should actively try to get males who may want children in the future, to take seriously the risk of RE and use a sperm bank. 2% is not never.

Risks can be small, but they can still happen to you. As a nurse, working on a busy surgical floor for many years, I've seen many post-op complications - some small, some major - and NOT always in the patients with the highest risk factors. We wish we never had to have surgery, but sometimes it's necessary, in spite of the risks that we must accept.

Diane

[WayDownInCoCrMo]

Quite a confusing conversation. Especially if your a suffering patient just looking for clues on what is better: fusion/ADR ... and in what cases.

What I read here: Do your homework, read, learn, question ... and simultaneously ... do not trust published data (i.e., what you read), do not trust your surgeon's answers to your questions, and much of what you learn (especially on the internet ...like on forums) is apparently garbage or dangerously misleading. One person says - decide on your procedure, then find a doctor who agrees. In other words, you must be smarter and more knowledgeable than the surgeons themselves. How can you do this? Attend conferences? No, of course not. You can barely move. Ask multiple doctors? Of course not ... again, you can barely breath, much less sit for hours in a waiting room. Send email? Forget it. No doctor is going to give medical advice except in person. Count the happy people vs. sad people post surgery on forums? Not after seeing the misrepresentation, defamation, censorship and banning of failure case we see on sites like ADRsupport. In any case, we can easily see in the member lists that the successful people's posts of 'encouragement' outnumber the failure warnings 1000 to 1.

Believe it or not, I studied like mad (on ADR) before leading my wife into this hell. EVERYTHING said ADR was supperior in every respect. Now, I feel like a Joseph Fritzl ... going to work, stores, sleeping free of pain ... while my wife is facing FIFTY years at least of hell. A destroyed leg, and the consequences of a late lateral explantation of a Prodisc. Hard to believe this was my wife only 3 years ago ... before we were tricked into 'volunteering' for someone's sick experiment ... for data that no one believes.


So, as Mark said on ADRsupport long ago: "This is a dangerous landscape. We can't trust the studies... we can't trust the statistics... we can't trust the anectodal evidence... we can't trust the doctors to always know what's right, or to always tell us the truth... and on and on."

I doubt you will be able to find that quote on ADRsupport ... as H has locked the doors, so to speak. By invitation only.

So, this begs the question: Who/What do you trust? Obviously, the first to exclude are those who have a financial conflict of interest. Next would be data which is not double-blind class I controlled (i.e., basically everything from Europe is self-monitored). Third would be, anyone who suggests that a selected set of success stories from forum members is justification for ignoring the generally accepted practices (rules).

Some of those people, even have the audacity to suggest that facet arthrosis is not a contraindication ... and then kick everyone who dissents off their board.

Question (back to Sharman's original question - regarding 'fit'): Does anyone know what the minimum height of the Prodisc-L is, and resultingly, what is then the minimum height of a person's natural disc?


Question 2: What grade of facet arthrosis is a contraindication to ADR?

Yours,
Matt

[mmglobal]

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.

Originally Posted by Job13

Do you disagree with a collapsed disc being a contraindication in the USA? (We know that anything goes in Germany).

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.

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.

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.

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.

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.