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Finally a controlled study!
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08/28/2006 23:05
Randy H.

not registered

08/28/2006 23:05
Randy H.

not registered

NA long term effects

Francis, you should be ashamed of yourself too. That outburst was *totally* uncalled for, *completely* unbecoming of a long-time poster like yourself. You'll loose your razor thin reputation around here :-)

(Even *larger* Grin)

Randy H.

08/29/2006 23:19
Donald 
08/29/2006 23:19
Donald 
NA long term effects

No Name,
It sounds like you have a different opinion from the one expressed by Randy on NA's long term effects I would love to hear what your thoughts are.
Donald

09/01/2006 23:24
Donald 
09/01/2006 23:24
Donald 
alternatives

Steve,
I sympathize with your predicament.
My advice would be to make sure that your surgery is with a top hand surgeon, not just any hand surgeon. Even though this would not guarantee success, at least you would increase its probability. I would also not go into surgery without having had a second opinion from another surgeon. You could check out whether his/her approach to surgery (assuming he recommends surgery) is similar to what your first surgeon said and also what the next step would be if there was recurrence. Good luck.

09/01/2006 23:16
Wolfgang

not registered

09/01/2006 23:16
Wolfgang

not registered

alternatives

Steve, you might apply for the collagenase trial but I don't know how easy it is to get onto and you need to be clode to the hospital because of the frequent post-injection checks. Another alternative to slow down progression might be radiaition therapy. At least it does not trigger recurrence/extensions. It worked for me when I developed very fast growing nodules immediately after a surgery. The issue with radiotherapy is that it is hardly available in the US and you might have to take a long vacation in Germany.

You find an overview on therapies on www.dupuytren-online.info.

Wolfgang

09/01/2006 23:01
BobN 
09/01/2006 23:01
BobN 
recurrance

Hi all,

First, I'd like to express my thanks to all contributors: articulate and to the point like Randy, Francis and Wolfgang; and the rebellious nature of the Sean/Gary posts and everyone else that just needs help - like me.

I've come to regard Sean/Gary as someone who articulates the steadfast limited thinking of the CHS community that only knows OS. If you're open minded, Sean/Gary's thoughts help you understand why they think OS is better (or just as good as NA).

But when you follow this forum at the higher meaning level, after a while it becomes obvious that NA will win over OS as the first option each of us should consider. One size does not fit all, so some of those less fortunate will/must resort to OS - but only after considering NA.

Recurrence is difficult for me to define. When I had OS on my foot and diseased tissue was removed, theoretically, no disease remained. When the nodules came back was ir recurrence or just another manifestation of a disease prone foot? In other words, if the first nodules did not occur, would the "recurrent" nodules have been the first occurance?
You see where this is going...

Since NA does not remove tissuem, does any time the disease occurs after NA mean recurrence or just occurence? The same question holds for after OS I suppose.

This is really thinking out loud, but I welcome any thoughts...

Bob

09/03/2006 23:49
Wolfgang

not registered

09/03/2006 23:49
Wolfgang

not registered

re: recurrance

Hi BobN,

it might help discussions if we distinguish between "recurrance" (= re-appearing at the treated joint or area) and "extension" (new nodules/cords elsewhere). This terminology is not my own invention but I think it's useful because it helps to better understand a difference between surgery and NA.

Recurrance occasionally happens after surgery but if the surgery is done well and the diseased tissue is fully removed it is rare and, at least, takes a while, i.e. years or forever until it appears again in the same area. (side comment: if you talk to good hand surgeons they sometimes complain about having to reoperate on alread operated hands because the originaly surgeon did not do a good job in removing the deseased tissue. That's another aspect of recurrance after surgery). I myself had surgery on my left hand six years ago and the fairly large operated area (ring finger from PIP joint down via MCP joint through most of the palm) is still without new disease. I would consider this is a good success (knowing that we can only delay the disease, not cure it).

NA does not remove the cord, therefore "recurrance" here might be a misleading term because the cord is not removed anyway. Recurrance for NA might thus be defined as a new or increased contraction of the treated joint. For some of us it seems to take years until contraction demands another NA, for others only months, the majority probably taking several year (let's wait for Charles Eaton's data).

The picture is quite different for extension: as we all know trauma/surgery can foster growth of new nodules/cords in other, not operated areas. Because it is difficult to judge what would have happened without the surgery, this effect is not researched and documented very well but I can assure from personal experience that it exists (and several others have described in this forum). Maybe the new nodules had been in a "sleeping" mode prior to surgery and surgery just triggered their growth or maybe surgery really initiated the new nodules. I myself had a single cord growing over maybe 10 years or so, I had it operated and within just a month I could feel six new nodules growing in previously not affected areas. This does not happen to all patients, I guess it is rather the exception, but it is worth considering. As NA does much, much less damage to the hand I would not expect it to trigger extension to other areas and so far no one reported that.

Finally, as sort of advocatus diaboli, I want to mention an argument that is occasionally raised against NA: because NA allows the cords to grow, the cord might eventually become so big that it is either very difficult to operate on or that even the finger has to be amputated. I personally believe that this is exaggerated and I don't know of any documented such case. But it is still worth considering and possibly the basis of Keith Denkler's suggestion to use radiotherapy after NA to stop/slow down further growth.

Finally, is NA better than surgery? I am tempted to use a frequent answer of an Italian friend of mine: "Yes and No". It is just two different approaches with different effects.

Wolfgang

09/03/2006 23:54
Sean 
09/03/2006 23:54
Sean 
BOBn

Obviously, you have not read my posts very well. I have always said that it was good to have more options, than a limited fasciectomy. That each person with Dupuytren's can have a different set of circumstances. For me, surgery was the best option. I have 0 degrees contraction (from 85 degrees)and very little scarring. If someone would rather do NA, that is fine. I have had no recurrence in any part of my hand after almost 5 years. I don't care what you do with your hand. Your situation is different. There have been very few complaints about results from limited fasciectomies on this forum, considering the thousands of procedures done every year around the world and the U.S. On this forum it is the same people complaining over and over, about their poor results. That is not unusual with any surgery.

09/03/2006 23:37
Donald 
09/03/2006 23:37
Donald 
Recurrence

Wolfgang,
Thanks for the great write-up on recurrence/extension. It certainly clarified things for me. What we need now is some NA long term data on "new or increased contraction of the treated joint."

09/03/2006 23:24
Randy H.

not registered

09/03/2006 23:24
Randy H.

not registered

It all comes down to Recurrence

In summary of where we are in this thread:

Given the fact that in Sean's particular case NA could easily have been the *wrong* decision, it's an open mind that goes on to say "it is good to have more options than a limited fasciectomy."

However, at issue is the fact that 95% of those in need don't *have* an option because there aren't give one by their CHS. Limited Fasciectomy is the accepted standard while NA has been *highly* criticized for two reasons: (1) Never Damage (2) Unacceptable rates of recurrence.

Now that the danger of Nerve Damage is being shown to be the exact *opposite* of typical CHS-Think (LF having a statistically higher risk than NA), the focus has turned to, and will remain on, #2: RECURRENCE.

While I think Wolfgang's Recurrence/Extension distinction is correct and quite helpful to the discussion, I'm afraid slam dunk data answering this long standing criticism of NA is years away. By Slam Dunk, I mean knowing the actual statistical oods of Recurrence/Extension for NA Vs OS. That is going to be a tall order, but in the minds of CHS, NA's viability as a legitimate option is going to ride on the answer.

Eaton/Denkler no doubt have a strong preliminary opinion which will be presented this month to the ASSH. Hopefully the Forum will get some feedback. There is no more important an issue for the Forum's #1 topic.

09/03/2006 23:43
toM

not registered

09/03/2006 23:43
toM

not registered

French Data

For those of you new to this forum, I'd like to post a little info about 'Sean'. 'Sean' has posted under other ids including the most frequent one of 'Gary'. While posting as Gary he repeatedly belittled NA and viciously attacked and insulted anybody that dared disagree with him. If you take the time to read the threads that go back to 2001+ you'll find proof of this for yourself.

I've followed this forum since 2002 and am sick of seeing this individual attempt to portray himself as reasonable and unbiased.

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