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NA success rate
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05/06/2008 17:30
Randy_H 
05/06/2008 17:30
Randy_H 

Re: NA success rate

Luba,

Obviously as the originator of NA Dr. L has the most experience of anyone in the world. However, that said, there is *nothing* in the procedure itself that can effect recurrence. While having performed less procedures, Dr. Denkler is a full hand surgeon by training and more aggressive than the French. He is perhaps the most progressive of the American NA practitioners, having actually cut through old OS scar tissue to perform NA. He remains the only one who will attempt that.

For someone with aggressive disease NA and Collegenase are similar and only buy time. The #1 most effective fire break is OS with skin graft. Not pretty but the best shot at not loosing use of a finger.

Bottom Line: you loose nothing gong to Denkler again until Collegenase is available as it *may* have lower rates of recurrence.

05/06/2008 19:06
callie 
05/06/2008 19:06
callie 
Re: NA success rate

Luba,
There is hope with surgery (fasciectomy). It has been six years since my surgery. My little finger was at 90 degrees contracture. Following surgery I have had 0 degrees contracture and there is no difference than other hand in strength, or appearance.

05/08/2008 01:53
Luba

not registered

05/08/2008 01:53
Luba

not registered

Re: NA success rate

Thanks Randy and Callie for your comments.

I am almost sure I will try a second NA (probably I will go back to Dr. Denkler for it) before I consider surgery...because...

I have consulted with a well-known Hand Surgeon in the Los Angeles area, and he said ,that according to his own statistics on OS , on PIP joint of small finger, the recurrence rate is above 90%. In view of this, why go through all the pain of surgery? I rather repeat the NA's as long as feasible or until Xiaflex is available. The surgeon actually encouraged me to try NA a second time.

I also believe that I didn't wear the night brace long enough after my first NA. (I have read somewhere on this forum that it should be worn for a long time, I think I wore mine only a few months). At first I did therapy with an OT, and wore the brace all the time, but then I got involved with other medical problems with my feet and ankle and was not consistent with therapy or the brace for my finger.

I would like to hear from others about this subject. thanks.

05/08/2008 03:29
callie 
05/08/2008 03:29
callie 
Re: NA success rate

Luba,
It surely is your decision. I am surprised that the surgeon you consulted stated the 90 percent (in what timeframe?). I would agree with him that Dupuytren's is never "cured". That is why my situation is so interesting to me. I was expecting some sign of recurrence by now and there is none whatsoever (after 6 1/2 years). The Dupuytren's was in the PIP joint in my finger, also. In my case what was important was that the involvement was on the palmer side of the joint. It is considerably more significant if the involvement is also on the dorsal aspect of the joint.

05/08/2008 03:50
diane s

not registered

05/08/2008 03:50
diane s

not registered

Re: NA success rate

Luba

I really believe using the night splint is important. I used it a few months after open surgery on both the pip and distal pinkie joints but had about 50 % recurrence after a year. then I had NA (Dr. Denkler) and used the night splint for much longer - perhaps 6 months. Its now two years after that NA and i have only had a very slight recurrence - perhaps a degree or two. I had resolved to wear the night splint pretty much forever and only quit when it broke. Keep meaning to get a new one. But meanwhile I have trained myself to sleep with my hand flat. I used to always sleep with my hands curled up like infants do and I suspect lots of folks do that. After my first surgery , I swear I could feel the tissue growing at night and my finger bending. It may be that fingers are moving all the time during waking hours and only when still for long periods can the nasty tissue re-grow. I know part of the reason for using the splint after NA it to keep the stuff from reconnecting. Any way, thats my story and I'm sticking too it. I do have a new nodule down in the palm so the disease has not stopped, but I'd rather it was there than in the pip joint. I first got this disease in 1999 and had a pretty good bend in the distal within a year followed by bend in the pip. 8 years later after two surgeries and NA I have a straight distal and an 18 degree pip bend in a pinkie that works pretty well. So i remain optimistic that i can keep my hands going for quite some time.

05/08/2008 05:46
Wolfgang

not registered

05/08/2008 05:46
Wolfgang

not registered

night splint

Diane, there is a theory that Dupuytren's contracture, at least to a large extent, is not really a contracture but the fixing of the finger in its relaxed, bent position. This happens mostly at night. There is no general agreement in the scientific community about this aspect of Dupuytren's but what you write seems to confirm this theory.

BTW: When you consider buying a new night splint you might have a look at http://www.dupuytren-online.info/dupuytr...techniques.html . This splint might be a little more expensive (I don't know for how much it sells in the US) but is comfortable and designed for longer use.

Wolfgang

Edited at 05/08/08 10:28

05/08/2008 06:37
Luba

not registered

05/08/2008 06:37
Luba

not registered

Re: NA success rate

Callie,

the 90 % recurrence the Hand Surgeon talked about is at 5 yrs. post- surgery (that is his own data). I too was shocked by such a high number and appreciative of his honesty. This is what is making me think I should try NA a second time. There is always time for OS.

Actually, I had seen a partner of this surgeon, in the same office, one year before, who after looking at my hand for about 5 minutes , scheduled a surgery for the following month saying only that there is a "chance of recurrence" without giving me a specific percentage. Not feeling too confident with him, I started to research NA on the internet, came across this forum, and wound up having my first NA with Dr. Denkler.
That was in the summer of 2006.

I have spent alot of time reading posts on this forum, and am coming to the realization that no two cases are alike, there are so many variables i.e. degree of contracture, what joint is involved, how aggressive your disease is, where the cords are located, etc. so its almost impossible to predict outcome or make comparisons between two people and decide OS vs. NA, but its great to have that choice and my personal opinion is to try the less invasive procedure first.

I am grateful to all who contribute to this forum.

05/08/2008 12:14
TrevB 
05/08/2008 12:14
TrevB 

Re: NA success rate

Quote:




Actually, I had seen a partner of this surgeon, in the same office, one year before, who after looking at my hand for about 5 minutes , scheduled a surgery for the following month saying only that there is a "chance of recurrence" without giving me a specific percentage. Not feeling too confident with him, I started to research NA on the internet, came across this forum, and wound up having my first NA with Dr. Denkler.
That was in the summer of 2006.




Although unconnected with Dups (which I have in my right hand BTW) but as an example of they don't always know what's best. I had a displaced break of the clavicle (collar bone) last August and in my follow up appointment from A&E the registrar took one look at the x-ray and said that it required surgery. The consultant was called because that is not really what I wanted and it was decided to leave it to see how things went. It's now 9 months down the line and despite having an obvious break on my shoulder (which is not a problem) I'm glad that we agreed not to follow the normal surgical route. I'm not sure how to go with my Dups yet but that break was a useful experience in that respect.

05/08/2008 13:52
wach 

Administrator

05/08/2008 13:52
wach 

Administrator

Re: NA success rate

To TrevB: I broke my collarbone many years ago, as a kid. At that time nobody cared about surgery and it stayed split. I got completely used to it and never had any problem with it. Actually I only remembered it when I read your post. I don't think you need to worry about it. Maybe having surgery would have pushed your Dupuytren's ...

Wolfgang

Quote:



I had a displaced break of the clavicle (collar bone) last August and in my follow up appointment from A&E the registrar took one look at the x-ray and said that it required surgery. The consultant was called because that is not really what I wanted and it was decided to leave it to see how things went. It's now 9 months down the line and despite having an obvious break on my shoulder (which is not a problem) I'm glad that we agreed not to follow the normal surgical route. I'm not sure how to go with my Dups yet but that break was a useful experience in that respect.





Edited at 05/08/08 16:53

05/08/2008 14:05
wach 

Administrator

05/08/2008 14:05
wach 

Administrator

Purchasing the FixxGlove night splint

Hi Don, Dupuytren Society is not involved in selling any products, we like to stay independent. We show this splint because it is designed specifically for Dupuytren's and it is good to wear. But for purchasing I need to refer you elsewhere.

I think the US marketing of FixxGlove is still being established. But I guess you can already buy it in Germany via the Internet. To my understanding Stefan from Hanover took over Internet marketing. I forwarded your post to him and I guess he will past soon how you can purchase it. I think you need to measure your hand size and Internet purchasing will require cash upfront.

Wolfgang

Quote:



Wolfgang, where can I purchase a glove lokr the one you posted a link to above?




Edited at 05/08/08 17:06

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