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ARTIST AND WRITER
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02/26/2007 00:30
Bob_Branstetter 
02/26/2007 00:30
Bob_Branstetter 
Re: ARTIST AND WRITER

Quote:



Hi Bob:

Thanks for your note.

I'm glad the Open Surgery has worked out for you.

My position is not that any one procedure is best for everyone.

As you correctly point out, there are pros & cons to both N.A. & traditional Open Surgery.

In my own case, I'm confident that I did the right thing by choosing N.A. over Open Surgery.

But, the main point is that we should all help other Dupuytren's sufferers learn from our own experiences. The only way to make an informed choice about what procedure is best is to learn about all available options.

Thanks again for posting your thoughts.

Mark


Hi Mark,
My purpose was to point out that there is a better surgical choice available than the traditional limited fasciectomy procedure that seldom gets mentioned. Unlike the traditional fasciectomy, Dermofasciectomy does something besides what I've heard jokingly referred to as" slice and dice surgery". It's uses full thickness skin grafts which act as a sort of firewall that keeps the diseased tissue from spreading. This is why the recurrence rate is so small.

It is really unfortunate that many people do not learn about the options available until it is too late. For instance in my case if I had not gone to an orthopedic (hand) group 5 years ago, where the company line was to do nothing until the disease had caused at least 30 degrees of contraction, I might have been able to avoid surgery of any kind by injections of Triamcinolone or one of the other drugs used to soften and flatten the cords. I have had three injections of Triamcinolone, a form of cortisone, in my left hand in which the disease fortunately has not progressed to the point of contraction. With luck and continuing self observation, I won't ever need to have open surgery or NA or any other corrective procedure on this hand. It would be a wonderful world if all people were educated about this disease and taught to recognize the symptoms in the early stage. Maybe, with more sites like this one, that will eventually happen.
Bob

02/26/2007 21:59
Randy_H 
02/26/2007 21:59
Randy_H 

My 2 Cents

Bob,

There is no question that many people do well with fasciectomy and Dermofasciectomy. Those are the people who are blessed with an easy full recovery form invasive hand surgery. So I think it's not the procedure itself so much but one's ability to recover. Not all do so well.

Proof of that is the *millions* are being spent on getting Collegenase through FDA approval. The expectation is that both surgeons and patients will want to give the noninvasive approach a go before going invasive. Yes, the rate of recurrence is higher with NA and Collegenase (the are almost identical). The assertion posed by Eaton and team at last year's meeting of the ASSH was that it was worth it, considering how noninvasive it is.

My direct question to Eaton: "What percent of new Dups patients will be able to use NA for the rest of their lives and avoid OS entirely"

Answer: "Something significantly over 50%"

So, NA is far more than a delaying tactic in the mind of the top expert in *both* NA and OS. But It all depends on the individual case. And Individual choice most always be respected. Congrats on your success with Dermofasciectomy!

And yes, the reason I'm involved here is that the BioS Forum did so much to educate our fellow patients. That work must go on. Thanks for being here.

02/27/2007 00:25
Bob_Branstetter 
02/27/2007 00:25
Bob_Branstetter 
Re: ARTIST AND WRITER

While I appreciate the enthusism for NA, one must also keep in mind that the long term track record for NA is very short compared to convenventional limited fasciectomy and even dermofasciectomy surgery. NA is surgery with a needle a needle to cut and anytime there is cutting, there is going to be scar tissue. With such a short track record, can anyone accurately predict what is going to happen to a hand that has had 5 or 10 NA procedures over the years? Dr. Eaton can say that over 50% of NA patents will be able to continue using NA for their lifetimes, but Dr. Eaton also states on his website that that the recurrence rate is higher for NA than conventional fasciectomy. That translates into a recurrence rate of nearly 50%. With this kind of recurrence rate, is it any wonder that insurance companies are slow to embrace it. Yes, you can keep going back for repeat procedures, but without insurance paying the bills, who can afford it long term.

Randy stated that "I think it's not the procedure itself so much but one's ability to recover. Not all do so well." While I agree to a certain extent, I also believe that the studies that show a recurrence rate of 8-11% for Dermofasciectomy took that into consideration with a sample size large enough to be statisticly significant.

I've seen the term "open surgery" used often on this and the old BioS Forum. Failure to point out the statistical difference in recurrence rates between the most commonly performed open surgery (limited fasciectomy) and Dermofasciectomy is my major criticism of this site. I'm all in favor of pointing out the advantages of NA, but not without pointing out that there is another open surgical option with far better odds for eliminating recurrence that any other currently out there.
Bob

02/27/2007 00:56
Randy_H 
02/27/2007 00:56
Randy_H 

Re: ARTIST AND WRITER

Bob,

I'd be *very* excited to see studies that showed an 8-11% recurrence rate for *any* Dups procedure. I assume the period studied is 5 years. That seems to be the Gold Standard here. When NA fails because of high recurrence, the skin grafting of Dermofasciectomy tends to be what both Eaton and Denkler advise. I didn't know the rate was as low as 11%. That is significant. Why isn't it used more often?

I don't think NA or Collegenase Vs some form of invasive open surgery should be looked at as an eithor/or proposition. It's a ladder of treatment from the less invasive to the more invasive. Side effects are always more probable the more invasive a treatment is, so a ladder of treatment is a common regimen. If an earlier attempt fails, up the ladder you go until something works.

As far as cost is concerned, if NA were widely available the cost is about $700 Vs at least $5,000 for OS. Presently, cost is only an issue when travel is included. Personally I'll go to Denkler if and when. The round day trip and auto rental will be an additional $170 or so from LA. Worth it to me. I'm not a good candidate for more OS so I don't really have a choice.

"can anyone accurately predict what is going to happen to a hand that has had 5 or 10 NA procedures over the years?"

Well, the French certainly, if you care to believe their data. Eaton does to some extent because everything else he learned from them turns out to be true. But no, we don't have even 5 years on US NA yet.

02/27/2007 01:24
Mark_D 
02/27/2007 01:24
Mark_D 
Re: ARTIST AND WRITER

Quote:



Quote:




Hi Bob:

Thanks for your note.

I'm glad the Open Surgery has worked out for you.

My position is not that any one procedure is best for everyone.

As you correctly point out, there are pros & cons to both N.A. & traditional Open Surgery.

In my own case, I'm confident that I did the right thing by choosing N.A. over Open Surgery.

But, the main point is that we should all help other Dupuytren's sufferers learn from our own experiences. The only way to make an informed choice about what procedure is best is to learn about all available options.

Thanks again for posting your thoughts.

Mark


Hi Mark,
My purpose was to point out that there is a better surgical choice available than the traditional limited fasciectomy procedure that seldom gets mentioned. Unlike the traditional fasciectomy, Dermofasciectomy does something besides what I've heard jokingly referred to as" slice and dice surgery". It's uses full thickness skin grafts which act as a sort of firewall that keeps the diseased tissue from spreading. This is why the recurrence rate is so small.

It is really unfortunate that many people do not learn about the options available until it is too late. For instance in my case if I had not gone to an orthopedic (hand) group 5 years ago, where the company line was to do nothing until the disease had caused at least 30 degrees of contraction, I might have been able to avoid surgery of any kind by injections of Triamcinolone or one of the other drugs used to soften and flatten the cords. I have had three injections of Triamcinolone, a form of cortisone, in my left hand in which the disease fortunately has not progressed to the point of contraction. With luck and continuing self observation, I won't ever need to have open surgery or NA or any other corrective procedure on this hand. It would be a wonderful world if all people were educated about this disease and taught to recognize the symptoms in the early stage. Maybe, with more sites like this one, that will eventually happen.
Bob





Hi Bob:

Thanks for the thoughtful reply.

Mark

02/27/2007 03:38
Bob_Branstetter 
02/27/2007 03:38
Bob_Branstetter 
Re: ARTIST AND WRITER

Hi Randy,

I don't know if this one will meet the "Gold Standard", but this 1999 article http://www.jbjs.org.uk/cgi/reprint/82-B/1/90.pdf from the British Journal of Bone & Joint Surgery Jorunal was one of the first I first saw the recurrence rates published. I've read others, but don't have them handy. (Is the 5 year Gold Standard because that is how long NA has been available in the US?)

From a quick Google search, I see that the first NA procedure as performed in France about 30 years ago. That is certainly longer than the 5 year history in the US, but still relatively short in terms of all the other accepted procedures for treating Dupuytren's.

If you include the extra expenses for required for out-of-towners desiring NA, you are looking at well in excess of $1,000 in out of pocket expense. With my Blue Cross supplement to Medicare, my total out of pocket expense for Dermofasciectomy was Zero. From what I've read, very few insurers are covering NA expenses in the US. If I were an insurance company, I too would stay away from NA until practitioners could prove that the recurrence rates were at least as low as that of traditional limited fasciectomy.

I total agree with you that the ladder of treatment should go from the less invasive to the more invasive. As I wrote previously, if caught soon enough, injections of Triamcinolone, other current drugs, as well as those now in clinical trials may eliminate the need for NA, or either of the TWO most common types of Open Surgery. NA would definitely qualify for the 2nd step of the ladder, but I personally don't see it as more than a one time procedure. If there is one recurrence, the odds are high that the 2nd won't be the final one either. Unfortunately the third rung of this ladder is broken - most orthopedic hand surgeons. Recommendations that patients do nothing until a significant degree of contraction has occurred should stop. I hate to think how many persons have accepted this recommendation as the final word on the subject and waited far too long for early treatments to work. Unfortunately, patients frequently will (blindly) trust that the surgeon will do what is best for them with limited fasciectomy and not take the time to investigate alternative especially if they get a second opinion from another orthopedic surgeon

I don't want to sound like a broken record, but I believe that this site has a duty to at least mention that Dermofasciectomy is an alternative that should be considered in addition to traditional fasciectomy when ever open surgery is included in the discussion.

Thanks for letting me stand on my soapbox.

Bob B

02/27/2007 07:14
wach 

Administrator

02/27/2007 07:14
wach 

Administrator

Dermofasciectomy

Bob, so far we refrained on our web site from discussing the various types of hand surgery because there are so many variants. But I guess you are right that we should at least mention the main categories and explain their pros and cons. Thank you for indicating that and thank you for pointing to dermofaciectomy in general. I am glad we are having this soapbox!

Wolfgang

Quote:



... I don't want to sound like a broken record, but I believe that this site has a duty to at least mention that Dermofasciectomy is an alternative that should be considered in addition to traditional fasciectomy when ever open surgery is included in the discussion.

Thanks for letting me stand on my soapbox.

Bob B


02/27/2007 07:52
Wolfgang

not registered

02/27/2007 07:52
Wolfgang

not registered

Recurrence

Just my personal opinion regarding recurrence:

The recurrence rate is, of course, a very important criterium but reliable data on recurrence are unfortunately scarce. I remember a general statement that everyone had recurrence if he/she lived long enough and that also illustrates the problem: recurrence data are usually collected at some point of time after treatment and from a usually quite limited set of patients. Differences in the personal history of the disease and in the personal consitution additionally skew the results.

The estimates on recurrence for "classical" hand surgery (limited fasciectomy) are as high as 66 percent (see e. g. below paper cited by Bob). But after what period of time? If you have a closer look on reported recurrence data you will also find that recurrence is not defined in a unique way. Does it mean that you needed another treatment or does it mean that the disease got just worse? Or does it mean that the disease got so much worse that you moved from one Tubiana grade to another? All these definitions are actually being used and obviously they affect the result.

Last not least: the low recurrence rate that Bob mentions and that is from below paper, it not for cords but for a more diffuse type of Dupuytren that is more rare. But NA is typically applied to explicit cords. I am not sure whether the recurrence rate from below paper for dermofasciectomy and the recurrence rate for NA can be compared at all. They seem to apply for different types of Dupuytren.

By the way: with my comment I don't at all want to downplay the role of dermofasciectomy. We just need understand what means what and we need to avoid misunderstandings.

Another comment: the effect of skin grafting might perhaps indicate that the skin and the tissue next to it are the origin of the Dupuytren tumor. It might confirm an earlier proposal that the sweat producing cells are related to growing Dupuytren and it might also explain the success of radiotherapy which primarily affects the skin. Many opportunities for further research ...

Wolfgang

Quote:



I don't know if this one will meet the "Gold Standard", but this 1999 article http://www.jbjs.org.uk/cgi/reprint/82-B/1/90.pdf from the British Journal of Bone & Joint Surgery Jorunal was one of the first I first saw the recurrence rates published. I've read others, but don't have them handy. ... Bob B

02/27/2007 15:00
Bob_Branstetter 
02/27/2007 15:00
Bob_Branstetter 
Re: ARTIST AND WRITER

Thanks to all of you for listening (i.e. reading) and responding. Most of the papers I have read on Dupuytren's Contracture and Dermofasciectomy in particular were found by Google internet searches and then following the trail of footnotes in cited articles. May I suggest that anyone interested in reading more about Dermofasciectomy and the recurrence rates in studies should use Google or one of the other good search engines and look for the key words "Hueston" and "Dermofasciectomy". The one constant I kept finding was the much lower recurrence rate for Dermosfasciectomy when ever compared to traditional surgery for the same circumstances.

In my opinion, it really doesn't matter if this particular surgery is not for everyone. The important thing is to spread the word that there is another (not as well known, but possibly better) option available.

I chose to write here because I quite frankly got tired of reading a constant barage of "NA is the best choice" and virtually no positive discussion of the other options. Recurrence rates need to be considered. When you have a disease that has no cure, some of us are looking for the most "permanent" procedure available even if it is not the least invasive.

02/27/2007 16:53
Randy_H 
02/27/2007 16:53
Randy_H 

"Gold Standard"

Bob,

The five year "Gold Standard" is an idea I got from my interview with Eaton. He said that his NA recurrence data was "unpublishable" because it contained nothing > 5 years. The journals would reject it and/or it would not be respected.. That's why he opted to present to the ASSH. He will publish once his data is older.

Most of the recurrence data I've seen *is* for five years, so at least we are comparing apples with other apples.

You are correct that in the early days the "debate" that ragged on the Bios Forum a few years ago the NA Vs OS issue was framed in black and white terms. That was unfortunate, but understandable since in those days no American CHS would even consider NA. The issue was polarized. Now that it is an accepted procedure and we are getting guidance from the CHS doing it in the US, it is clear that it 1) Isn't for everyone 2) Can't replace surgery for many, and is 3) Simply an entry level procedure, as is Collegenase.

But, for those who try NA/Collegenase first and need no other treatment NA/COL *is* "their best choice". I'm personally no fan of Limited Fasciectomy (one was enough, thanks) so going straight to Dermosfasciectomy makes sense if NA fails do to recurrence. That's my personal opinion from having both LF and NA plus discussions with Eaton/Denkler/Press. No, they aren't your normal CHS so I admit my bias.

It is important that we all know our options. Surgeons don't always tell us what they are but just do their normal one size fits all approach

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