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10/29/2008 23:26
jimh 
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10/29/2008 23:26
jimh
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Re: no more surgery
I had a nerve completely severed during conventional surgery by an experienced hand surgeon. When I woke up, the surgeon felt compelled to tell me he'd already called his lawyer. How nice of him to share that news! He'd patched up the nerve as well as he could and over the course of a couple of years, about half of the sensation returned.
The plain fact is that many of not most hand surgeons just don't know much about NA and jump to the conclusion that it's 'alternative medicine' being sold by practitioners who lack the necessary skill and knowledge. They're not just protecting their income, they want to protect patients from quackery - but they're wrong.
This picture is changing fast.
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10/29/2008 23:54
Randy_H 
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10/29/2008 23:54
Randy_H
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Re: no more surgery
Jim, I'm not so easy on them.
Eaton and his team presented their data on NA to the ASSH, the most prestigious society in this specialty. The meeting was well attended. I contend that the majority of CHS know what Eaton is doing. Granted, many may have not have even bothered look at his data. Still, no excuse. Meanwhile they are all hopeful about Collegenase. They know they need a noninvasive option. It's right under their noses. So where are their collective noses?
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10/30/2008 11:06
TrevB
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10/30/2008 11:06
TrevB
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Re: no more surgery
Quote:
because he says NA goes in blindly and can cause nerve damage...not true, since NA procedure relies on patient input and sensation during procedure...I just think most surgeons are just from the "old school" and cannot accept changes....besides with all the possible side effects of OS, including nerve damage, how can they say that? (I know someone that this happened to with OS).
I was more interested in his opposition to radiotherapy. I've a consultation in 2 1/2 weeks to see if this would be good for me but I'm less than confident about it myself (despite asking to go) and that's not really the best frame of mind to go in, especially when you know that the guy your seeing is very busy dealing with seriously unwell people.I don't want to be one of them by choosing that option? Do I bottle it and hope that NA might be all I need? Do I wait and hope that colloganese works and is approved quickly in the UK. So many decisions 
Cambidgeshire, UK.
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10/30/2008 17:31
Randy_H
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10/30/2008 17:31
Randy_H
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Re: no more surgery
TrevB,
The possible emergence of Collegenase should have little to do with you decision to push for radiotherapy. Collegenase simply does biochemically what NA does mechanically. It has yet to be shown that Collegenase is any more effective than NA. Some argue that Collegenase may be a bit less invasive than NA and thereby slightly less prone to recurrence, but there is no data on that as yet.
Depending on the aggressiveness of your disease and your age, NA/Collegenase may in fact be all you ever need. Taking all cases combined, Eaton's guess is that these noninvasive approaches will allow 50% of Dups patients to avoid OS entirely.
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10/30/2008 20:25
jimh
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10/30/2008 20:25
jimh
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Re: no more surgery
Randy_h, my impression is that the medical industry recognizes 2 categories of treatment: "drugs" and "surgery". Anything else is "alternative medicine". For the MDs this is a conceptual thing, but for the insurance industry it's a major distinction because "alternative" treatment is much harder to defend against litigation.
MDs are receptive to Xiaflex because it's a drug - a product, marketed to them through normal channels, vetted by the FDA.
Consider my anecdote about the surgeon rushing to the phone to tell his lawyer he'd just severed a nerve. Now imagine he did this while performing an "unrecognized, alternative procedure". This is what goes through the mind of a surgeon when he first hears about NA, even if its from Dr. Eaton.
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10/30/2008 20:29
TrevB
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10/30/2008 20:29
TrevB
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Re: no more surgery
Quote:
Depending on the aggressiveness of your disease and your age, NA/Collegenase may in fact be all you ever need. Taking all cases combined, Eaton's guess is that these noninvasive approaches will allow 50% of Dups patients to avoid OS entirely.
That's my conundrum though RandyH. I see radiotherapy as a risk (through some ignorance perhaps) and I'm not bright enough to ask the right questions during a quick appointment with a consultant at the hospital. I don't think this post below helped:
Quote:
Hi, I thought I would just add a note of caution to this. Radiotherapy is not a benign treatment. I have seen a couple of patients with post radiotherapy recurrence and I can tell you that there is a lot more diffuse scarring after the treatment which makes any subsequent treatment very difficult and the skin is of a different texture again adding to the difficulty of surgery.
Radiotherapy used to be used for all sorts of things in this country and we gradually removed it because of the dangers. So while one shot may not be too dangerous, several will. Radiotherapy of all sorts is designed to kill things, which is why we use it for Cancer.
In addition on a personal note why go for a dangerous treatment which takes a week against NA at a single visit with less risks?
Rather than those points though, my main concern would be secondary cancer. I know we're told the risk is negligible, but compared to or with what? As it says, if your disease can be managed by non invasive methods then do you need to do this?
Cambidgeshire, UK.
Edited 10/30/08 22:44
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10/30/2008 22:39
Randy_H
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10/30/2008 22:39
Randy_H
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The Game Has Changed
Jim,
You points are well taken, however...........
I think the game changed when Eaton was allowed to present NA to the ASSH. Prior to that point he was unable to teach the procedure for insurance reasons. However, after the ASSH presentation it was in fact "recognized" by the ASSH and Eaton was free to do so. There is a medical billing code for it, and has been from the get go. Numerous web sites now list NA as a viable option.
I appreciate your take on this but I still see it as willful blindness on the part of CHS. As an example (and as you may know), I presented the facts about Eaton to a highly regarded former head of the ASSH. Beyond that, I returned to his office just to show him Eaton's work on a hand I would not let him operate on. Based on that I cajoled him to attend Eaton's presentation, which he did. What was the outcome? He still refuses to do NA. It's OS all the way baby.
What can explain this intransigence? My guess is that at the end of the day he has been doing OS for so long, has patients lining up for his revered OS, and has *zero* professional or personal motivation to change. You and I both know that his patients are the losers, but somehow he has managed not to see it that way. I think his is still the predominant reaction to the facts.
My opinion is also informed from talking at length with numerous NA practitioners that have come over from the Dark Side :-) Most are less generous with their own unrepentant fellows than you have been :-)
What will change this is the shocking realization by CHS that they are loosing business to those doing NA. And increasingly, they indeed are. Time is on our side unless Collegenase derails NA's growth.
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10/31/2008 05:49
Wolfgangnot registered
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10/31/2008 05:49
Wolfgangnot registered
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Re: no more surgery
TrevB, if you don't want to have radiotherpay your don't need to and you don't need to feel guilty about not having it! We all need to make our own decisions and the Dupuytrens web site can only provide information. The decision is yours.
Wolfgang
Quote:
....
Rather than those points though, my main concern would be secondary cancer. I know we're told the risk is negligible, but compared to or with what? As it says, if your disease can be managed by non invasive methods then do you need to do this?
Cambidgeshire, UK.
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10/31/2008 11:20
Linda Bnot registered
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10/31/2008 11:20
Linda Bnot registered
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Re: no more surgery
Needless expensive and dangerous Open Surgery of the hand without a first attempt at NA must stop. I did not say Open Surgery must stop, just the presumptuous assertion that OS remains the only option.
Amen to that !!!
I now take a couple of copies of this information about this forum to all doctors that I see..Some are interested.. Some are not..I am going to post all names from now on..These doctors need to wake up and do the most for their patients that they can..I also include before and after pictures of each procedure...I am looking forward to seeing Dr. Dinkler in Dec. and am not afraid at all because I saw De. Eaton in 04 and was amazed at the results..
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10/31/2008 21:23
jimh
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10/31/2008 21:23
jimh
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Re: no more surgery
Randy_h, your information is much more up-to-date than mine and you are no doubt right. The resistance today is probably a mixture of "not invented here" syndrome, and lack of interest in learning a new technique. Many of these MDs probably understand what Eaton is presenting, but aren't personally interested in traveling to Europe, as Eaton did, to study the procedure without seeing clearly how it will increase their income.
Let's say a surgeon here in the US hears an NA presentation and wants to start doing it. What's his path to acquiring the technique? He can't just watch a video, I assume he has to spend his own time and money to learn it from an expert in another city, or country. Not many surgeons would have the motivation to do that. The one that worked on me, for example, gave an impression of being booked solid and practically running from one surgery to the next.
Auxilium will spend money to familiarize doctors with the application of their product. They'll fly people around to make presentations, and the emphasis will be on how Xiaflex injections are simpler and less risky than NA, and just as profitable for the MD.
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