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What to do when NA doesn't work
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06/23/2013 19:32
Anne 
06/23/2013 19:32
Anne 
What to do when NA doesn't work

Hi, I have had Dupuytren's in my right hand for quite a few years now and my pinky is contracted severely. I had the NA procedure done a year ago and while the procedure straighten my pinky considerably it only lasted a few months. I talked with my surgeon (he is one of the best) he said that since it returned so aggressively, I was not a candidate for another NA procedure and said I should look into hand surgery... after reading up on the open hand surgery I am concerned about having it done... Is it worth the risk of the disease jumping to other areas? Am I hurting myself in the long run if I don't do anything else..... am I increasing the risk of losing my finger? Thanks in advance for your feedback... Anne

06/23/2013 22:38
callie 
06/23/2013 22:38
callie 
Re: What to do when NA doesn't work

I had surgery on my little finger 11 1/2 years ago. My finger had a 90 degree contracture. Now 11 1/2 years later my finger is still as good as before Dupuytren's (zero contracture). There has been no other contracture in the hand since the surgery. As everyone is aware, Dupuytren's is different for everyone. Because I had great success does not mean that everyone will (just like NA). I had RT on my other hand this year and the technician performing the RT showed me his hand. He had surgery on his little finger over 15 years ago and his hand showed no signs of contracture.

There was very little pain involved with my surgery. I just took Tylenol for the discomfort for a couple of days.

06/24/2013 00:43
zinkadoodle 
06/24/2013 00:43
zinkadoodle 
Re: What to do when NA doesn't work

I'm like Callie, except that I think I had some more post op pain than she experienced. I was eating Vicodins for about two weeks. I was in a lot of pain. But, like Callie, 14 years after surgery on my left hand ring finger and middle finger, and to release the tendon sheaths, I am better than I was before the surgery. I have some cords and nodules that developed right after the surgery, but they never contracted. My hand is great. But, as Callie said, we're all different. So, I'm not saying that if you have the surgery everything is going to be hunky dory, like it is for me. But, I really don't think that doing nothing is better than surgery. If your doc is recommending surgery, give it some careful consideration.

I just had Xiaflex injections into my palm and ring finger of my right hand about two months ago. My hand is not as good as my left hand, and the doc said it's really not going to get any better than it is right now. That's disappointing to me, but at 15 degrees of contracture, I can live with it. If it begins to contract more, I'm going for another dose of Xiaflex. I opted not to do the surgery because I could pick other procedures. When I had the left hand palmar fasciectomy 14 years ago, there were no other options. I opted for the Xiaflex because I've read that it doesn't have the recurrence rate that NA has, though some people will debate that. For me, the jury is still out. ~Diane

06/24/2013 16:45
Randy_H 
06/24/2013 16:45
Randy_H 

Re: What to do when NA doesn't work

NA is known to have higher rates of recurrences than Open Surgery. And sadly no one knows of a way to slow agressive disease it down. The advantage of OS is that the idea is to remove all the diseased tissue, somewhat like a cancer surgery. But even then, whatever the factors in you body were that started it in the first place are still there. Recurrence is still quite possible, especially if you have aggressive disease.

The #1 Dups stopper is OS with Skin Graft. While not fun, this is the Fire Stop court of last resort.

Personally I will never have standard OS again. The negative side effects for me are just not worth. I'd repeat NA every six months if I had to. But in the end, if I had to up the anti, I'd skip all the way to skin graft. If NA doesn't work why take half measures? If it's that agressive OS will likely fail as well. Get new skin on your palm is my advice.

I'd consult numerous surgeons for 2nd opinions abut this. Talk to those who do NA and Xiaflex. They will have broader experience to consider all your options.

06/24/2013 19:07
spanishbuddha 

Administrator

06/24/2013 19:07
spanishbuddha 

Administrator

Re: What to do when NA doesn't work

Randy_H:
And sadly no one knows of a way to slow agressive disease it down.
Just wondering if anyone knows the latest research on using tamoxifen pre or post surgery to slow down aggressive DD? This has been reported before as having promising results, in the 'the book' and a quick search throws upate Eaton considering more trials.

06/25/2013 05:58
wach 

Administrator

06/25/2013 05:58
wach 

Administrator

Re: What to do when NA doesn't work

Originally it was hoped that administration of tamoxifen would provide a long-term benefit in combination with segmental fasciectomy. In 2012 Ilse Degreef presented 2-years results at a symposium in Leuven and they were not very promising. The effect seems to vanish after 1-2 years, i.e. there seems to be no long term benefit of a tamoxifen treatment. Considering the side effects of tamoxifen it doesn't seem to be a good venue anymore.

Wolfgang

spanishbuddha:
Just wondering if anyone knows the latest research on using tamoxifen pre or post surgery to slow down aggressive DD? This has been reported before as having promising results, in the 'the book' and a quick search throws upate Eaton considering more trials.

06/25/2013 15:54
cokiwi 
06/25/2013 15:54
cokiwi 
Re: What to do when NA doesn't work

I just got back from a consultation with a hand surgeon who recommended surgery plus a skin graft to prevent recurrence. About 18 months ago I had N/A done on my little finger of my right hand as my PIP was at 90'. It had contracted to 90' very quickly. The N/A got the finger almost straight but within 3 months it was contracting again. A month or two ago I tried N/A again on the same finger, but the Dr. was unable to straighten the finger, telling me that the fibrous tissue was too deep to get to without damaging nerves etc. He recommended surgery. I had traveled to Arizona for the N/A as no one did it here in Colorado, but I will have the surgery done in CO.

The surgeon I saw today is not a fan of N/A but I don't have that option on this finger any more anyway. I will go ahead with the surgery, and probably the skin graft too as it seems to help prevent recurrence. He wanted to remove nodules in the palm as well, but I am opting just to remove the tissue in the finger itself as the MP joint is not involved. I will have my other little finger done next spring. It is at about 35' right now. I will continue to travel to get N/A as my other fingers contract because I believe in keeping it simple. Surgery should be a last resort, which it is on my pinkies.

06/25/2013 21:16
LubaM. 
06/25/2013 21:16
LubaM. 
Re: What to do when NA doesn't work

Cokiwi,
What you describe makes sense to me. I have both pinkies involved with DD and have had NA three times, twice on right hand and recently first time on left hand. I am like you, in that the right hand NA didn't last more than six months each time. I originally thought that changing doctors would make a difference, but for me it didn't, and even with the early recurrence in right pinkie, I have given it a try on the other hand, in the hopes that the left pinkie will have better results than the right one.

It has only been five weeks since the left hand NA, am doing hand therapy and wear a night brace, but I am still struggling with lots of swelling of the finger and PIP joint plus a cord-shaped "weird" swelling on the outer edge of the finger, that is painful and which the doctor called "unusual". I guess for me the next thing for the pinkies would be surgery with graft, but it would be the last resort....my plan is to leave it alone for now because I think any procedure can precipitate the progression and activate the disease.

Edited 06/26/13 00:18

06/25/2013 21:48
Randy_H 
06/25/2013 21:48
Randy_H 

Re: What to do when NA doesn't work

"I think any procedure can precipitate the progression and activate the disease."

That's why most of the time surgeons remove all the diseased tissue in a "Limited fasciectomy" procedure, which is what is referred to as Open Surgery (OS)

https://en.wikipedia.org/wiki/Dupuytren's_contracture#Limited_fasciectomy

However, Wikipedia is reporting twice the recurrence rate with NA Vs OS. That means that normal OS without skin graft will only be 50% better than NA. Considering all the issues with OS (read the above Wiki article) that 50% doesn't seem worth it unless you add a graft. Even then there is no guarantee. I don't know what the recurrence rate is with a graft. Does anyone here know the stats?

06/25/2013 22:06
LubaM. 
06/25/2013 22:06
LubaM. 
Re: What to do when NA doesn't work

Thanks Randy for the information... also, isn't it true that for NA of the PIP joint of pinkie finger there is only a 50% improvement possibilityexpectation? This is such a weird disease, no two people are alike !

Edited 06/26/13 01:59

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