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Confession of an NA Zealot
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01/26/2013 19:06
Tusk 
01/26/2013 19:06
Tusk 
Re: Confession of an NA Zealot

a nice comparison by Dr. Eaton who has performed approx 9,000 NA's per the info at the bottom

http://www.handcenter.org/newfile20.htm

Xiaflex has some limitations with treatment time and if multiple fingers need work. But it's nice to have another option. I can see NA disappearing down the road. First, not that many hand doctors have acquired the training to do NA and with the ease of administering the collagenase it just seems like more of them won't ever try.

Edited 01/26/13 21:08

01/26/2013 23:06
flojo 
01/26/2013 23:06
flojo 
Re: Confession of an NA Zealot

Xiaflex or NA - it depends on the severity of contracture. I watched progression of my Dupuys like a hawk and got NA when contracture was 15-20%. Go visit Dr. Denkler, 20 minute procedure, drive back myself, and done. Add the night splint, might not have to even go back for NA. If it was progressing like it was at time of my first NA, I would seriously consider Xiaflex.

Now, I did have RT to stop the progression. For me, RT is my knight in shining armor to slay this Dupuytren's dragon!

01/29/2013 05:05
Randy_H 
01/29/2013 05:05
Randy_H 

Re: Confession of an NA Zealot

Tusk,

With the advent of Xiaflex there is no longer any motivation for CHS to get trained in NA. None. Well, that is not completely true from my perspective, but true from their perspective. They would have a more complete practice and a less expensive option, but even without Xiaflex on the scene it was near impossible to get them to consider NA for reasons that readers of this thread are now well versed.

So we have our 41 or so NA guys in the US. Employ them. Refer them and take full advantage. I predict that as they retire its back to France to get NA.

Strange World.

01/29/2013 15:32
zinkadoodle 
01/29/2013 15:32
zinkadoodle 
Re: Confession of an NA Zealot

callie:
"A study where patients were treated with these collagenase injections showed a recurrence rate of 67% in the MCP joint and 100% in the PIP joint."

That is where the money comes in. This account of the procedures (including Denkler's assessment) is interesting. Also, a nice reference for Wolfgang and the International Dupuytren Society.

http://en.wikipedia.org/wiki/Dupuytrens_Contracture

What is also interesting in this article is the stated recurrence rate for NA, which is 85% after 5 years. Given those return rates.... hmmmm........ 67% or 85%? Obviously, everyone responds differently. I had a left hand fasciectomy over ten years ago, and I have never had a recurrence on that hand. Except for the scar, my hand is perfect. That is not the case with others, who claim much higher rates of recurrence. And, it's not to say that I will never experience recurrence. My point is, if you're going to quote percentages in an article, I suggest you quote them both to make your point.

For what it's worth, I am going the Xiaflex route on my right hand. I've been accepted into the multi cord clinical trial, so money will be no object for me. As I've stated here before, if I was not accepted, either insurance would cover the cost and leave me with little out of pocket expense, or I was going for the NA. The driver for me is the money. Given the state of my disease, I think either Xiaflex or NA would do me just fine. At least, that's my hope. I go for the procedure either the end of Feb or into March. I'm not sure. I just want it to be over with.... behind me...... done!!! So now, just wish me luck. ~Diane

01/29/2013 16:14
callie 
01/29/2013 16:14
callie 
Re: Confession of an NA Zealot

Diane, I wish you a good result.

You said, "My point is, if you're going to quote percentages in an article, I suggest you quote them both to make your point".

I think you missed my point. The "point" I was making is that the money to be made with Xiaflex is the return procedures (as well as the first procedure). The Xiaflex costs are considerably more than with NA. A person could probably do four or five NA procedures for the price of a Xiaflex procedure.

You said, "What is also interesting in this article is the stated recurrence rate for NA, which is 85% after 5 years". I agree the recurrence is high.

You said, "I had a left hand fasciectomy over ten years ago, and I have never had a recurrence on that hand. Except for the scar, my hand is perfect". I also had a fasciectomy over ten years ago (11 years) with a perfect outcome. It is why I would have surgery instead of NA or Xiaflex if I needed a procedure on my other hand. I wouldn't wait as long next time, however.

01/29/2013 16:55
zinkadoodle 
01/29/2013 16:55
zinkadoodle 
Re: Confession of an NA Zealot

Callie, I'm sorry I missed the point of your comment. You're right, of course. The cost of Xiaflex for repeat procedures is ridiculous. I am really so tempted to go the surgery route again, given my success the first time around. However, I will try the Xiaflex. If it does recur, particularly relatively quickly, I will then insist on surgery and have them just remove the diseased tissue, rather than leaving injured diseased tissue behind to repair itself and regrow. Geez.... Why is regeneration so available for fascia, but not for other organs? A rhetorical question, of course. ~Diane

01/30/2013 07:50
Randy_H 
01/30/2013 07:50
Randy_H 

Re: Confessions of an NA Zealot

As I was reading these latest posts I was struck by how incredibly significant our past experiences effect our current personal biases. I am not a bit surprised that a few of or our contributors fancy OS because of their previous experience.

I, on "the other hand" have 2 hands treated for Dups. One, performed by the then head of the American Society of Surgery of the Hand (I don't say this to brag, but to say this guy was one of the best in the business), the other by Dr. Charles Eaton. The first was Open Surgery with the Mc Cash method, the other was NA. The first was 10 years ago, the NA was about 8.

I live with the profound differences of these two every day of my life and have no expectation of change. My left OS hand is in constant pain and stiffness. All the joints are enlarged, in pain, stiff and hard to move. I grind my teeth because of the pain. I've seen countless CHS to try to find a solution but they all all are far more interested in asking for permission to closely examine the scars left by the most famous CHS in practice. Yes, I say, he did the Mc Cash, but I'm told no longer due to the great increase of "flair reaction" in these patients.

"On the other hand", my Left is Night and Day different. Very straight, almost good as new, no recover time, no problem, no pain. No recurrence. Bang Zoom.

So I'd be crazy not to admit a bias. Knowing that I must look at the data from 1,000 hands, not just the two of mine. And this was an important aspect of this exchange between zinkadoodle and callie. Let's look at the "Data" and forget about our own personal experience. I agree. That's why I had to "give it up" for Xiaflex over NA. New data could change that, but for now Xiaflex has the edge (except for that pesky price issue. On "value" NA wins.)

But here's the bottom line. I'm glad two of our fellows had a great experience with OS. Many have. But I recommend all newbies steer clear. Yes, I'm biased. But I'm far from alone. So are most of the CHS who have done OS for years. Ask yourself this: Why on Earth do most of then now offer the non-invasive Xiaflex when we know scientifically that the rates of recurrence are greater than with OS? If you say it's because they want repeat business then we're done talking. You are out of anyone's reach to save you from paranoia. These guys are often overly self assured, but intentionally profiteering from your misery as a whole group of professionals. Really? Please. Who is making the money is BioSpecifics and Auxilium, not the CHS. But it's the CHS who are following in droves.

But if you finally reach the conclusion that they are tired of seeing the long term carnage of too may OS patients and would rather try the non-invasive approach first, then you know you should too. It's not OS to start. That's the End Game. (zinkadoodle, if that's where you wind up, my empathy is with you. Might as well go skin graft as that is the final fire break. Too many OS and you wind up like me.)

But then, you know I'm biased.......and why.

Continued Confessions of a NA Zealot.

Edited 01/30/13 10:02

01/30/2013 12:39
zinkadoodle 
01/30/2013 12:39
zinkadoodle 
Re: Confession of an NA Zealot

Thanks Randy. Even though my experience with OS was somewhat stellar in the big scheme of things, I do know that the unintended consequences, the side effects, and iatrogenic issues are always higher with OS than with less invasive procedures. I think it's foolish to think that OS is OK as a first choice. When I had it done, it was the ONLY choice. I just got very lucky. Surgery should always be a last resort for any problem always. Of that I am convinced.

Xiaflex, here I come!!!!

01/30/2013 15:17
callie 
01/30/2013 15:17
callie 
Re: Confession of an NA Zealot

Randy, you asked a good question.

You asked, "Why on Earth do most of then now offer the non-invasive Xiaflex when we know scientifically that the rates of recurrence are greater than with OS?"

My surgeon offers Xiaflex as well as surgery. I think it is to give people, such as yourself, a choice. But, differently from your opinion, he also said that he had very few patients who returned, or complained, following his surgery. I have had similar responses from several people who I know that had surgery for Dupuytren's. I have not known any (about 10-12 people) who have had complications from the surgery. As recently as two weeks ago, the person who did my RT showed me his little finger that had been operated on 20 years ago. The finger was perfect and zero contraction.

Keep in mind that the data for surgery includes all of those people who have surgery very late in the disease cycle. These are often "last resort" people. Surgery that late in the game will naturally be much more difficult. My finger was close to that stage and my surgeon remarked that if I would have waited much longer he would have had to perform the surgery in two different operations just to gain access to all of the palm/finger. As it happened, he did the surgery once and my finger has been as good as before Dupuytren's for the last eleven years.

If surgery (which is the most prevalent procedure) were not so successful, there would be hundreds on this forum complaining about the surgery. There are very few on this forum complaining about surgery. Additionally there have been many who visit here saying that there surgery "was not a big deal" and successful and then they are gone and we don't hear from them again.

01/30/2013 22:57
Randy_H 
01/30/2013 22:57
Randy_H 

Re: Confessions of an NA Zealot

callie,

I've admitted to Bias, Zealotry and so I might as well through in Jealousy!

Yep, I'm the one who took the bullet. However, the data indicate that I'm not as alone as you are suggesting:

http://dupuytrens.org/Complications-of-Treatment.html

http://www.ncbi.nlm.nih.gov/pubmed/3944435?dopt=Abstract

http://dupuytrens.org/Post-Surgical.html

The bottom line is as Eaton says "Complications from open surgery are much more common than with NA or Xiaflex."

http://www.handcenter.org/newfile20.htm

I think Eaton's exact meaning for "much more common" here is, well, Much More Common

The same "last resort people" will always be there. They are still out there. They simply will now have much fewer complications from a far less invasive procedure.

Each of us comprise a sample size of 1 so I'm not saying my experience alone applies to anyone else, other than the fact that with OS my experience is "much more common than with NA or Xiaflex."

Edited 01/31/13 08:46

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