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NA for early-stage Dupuytren's?
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07/02/2010 23:42
tam1 
07/02/2010 23:42
tam1 
NA for early-stage Dupuytren's?

I was diagnosed with Dupuytren's last year and have cords in both palms, with no nodules or contractures so far. However, I have considerable discomfort in both hands at times, with tightness and aching. My palms are "cupped" in appearance, and the cords are not small. Has anyone on the forum had NA done on cords in the palm during the early stages of the disease? Could NA cause trauma to the palm and hasten the development of the disease? In other words, is it risky or inadvisable to do NA at this stage?

07/03/2010 01:54
flojo 
07/03/2010 01:54
flojo 
Re: NA for early-stage Dupuytren's?

My hand was at about the same stage as you describe - no contracture of fingers, tightness across the palm and some cupping, reduced span across palm from thumb to pinky, reduced span across the web from thumb to forefinger, some visible cords and some deep, itchy crawly feeling in the palm. I was always conscious of the weird stuff going on in my hand/palm.
I chose NA to flatten the palm. It was not a problem at all. I followed about 4 months later with RT. My radiologist said that getting NA first so the hand could lay flat was the thing to do. RT has stopped, or at least slowed the progression. No more itchy crawly feeling. Increased span beyond even what NA did.
My position was to NOT wait until I had folded up fingers. I'm glad I chose what I did, although I was uneasy at the time. I evaluated everything and made my decision based on all the info I could find. I'll do both again if the same thing occurs in my left hand.
Just read the info in links you can find in the menus on the left. Read people's experiences in this Forum, ask every question you think of. After you know all your options, you will be able to decide. Only you can know that because each person, each hand is different.

07/03/2010 04:02
tam1 
07/03/2010 04:02
tam1 
Re: NA for early-stage Dupuytren's?

Flojo, thank you for describing your condition before NA and the results you were able to get. I wonder how often people in the early stages choose to undergo NA and what the docs who do NA think of its use before contracture appears. Do you know if it is commonly done before the hand gets worse?

07/03/2010 21:02
flojo 
07/03/2010 21:02
flojo 
Re: NA for early-stage Dupuytren's?

@Tam1,
From what I have researched, but mostly from my experience and from experiences posted on this Forum, NA doesn't seem to be a trauma that triggers Dupuys, whereas surgery is a much more invasive process that may. I would agree. Others have attributed an injury or trauma to their hand as seeming to trigger or make their Dupuytren's worse. In my case, I had no trauma or injury, only 70 birthdays which you can say add up to something like trauma. (The first thing I ever read about DD was that it occurs mostly to people in their 6th or 7th decade. I loved that subtle way of saying, "You're old! I use it now, "I'm not old, just in my 7th decade.")
From the start I was aggressive in searching for alternative treatments to avoid ever having to have my hand drawn up into a claw or to ever need surgery, so I pursued NA for my early DD. I was not accepted for Xiaflex clinical trials because my hand wasn't contracted enough. My NA doctor, a hand specialist/surgeon used to do the full surgery for Dupuy's Contracture before he learned about NA. Now, he prefers to do the alternative treatment. Surgery seems to always be an option after NA, but sometimes NA isn't feasible after surgery is my understanding. (Others on the Forum, please correct me if I'm off base on this.)
Just my preference, but I did not want my DD to progress to severe contracture. If joints are too bent, it is much more difficult to release for various reasons.
My radiologist said the best sequence is NA first to release any contracture, then RT. I had cords in my palm and some contracture caused by those cords. I was and still am fortunate not to have contracture in the PIP and DIP joint. Even the metacarpal joints were affected very little, mostly in my thumb. DD was just busy doing it's thing in my palm.
If you don't have any contracture but active DD, RT will likely work to prevent contracture. RT helps with the nodules but it will not release cords that have already contracted. My intent with RT was to keep DD from progressing and I didn't expect or care if it made it better, however my RT did reduce the tightness in my palm but not completely. I took that as an unexpected bonus.
Not sure I answered your question. Feel free to ask me or others. This is a very helpful group of people.

07/05/2010 01:00
tam1 
07/05/2010 01:00
tam1 
Re: NA for early-stage Dupuytren's?

Flojo, thank you again for sharing your experience and knowledge. I developed DD soon after tearing ligaments in both wrists. Following those injuries, I went to hand therapy for over two months to address pain and swelling in my finger tendons and palms, and to restrengthen my wrists somewhat. I also had to undergo surgery for a trigger finger that developed in the same timeframe. My DD does sound similar to yours before you did NA. Again, I appreciate your taking the time to respond so generously to my question. I'll keep NA in mind, definitely!

07/05/2010 16:49
Larry 
07/05/2010 16:49
Larry 
Re: NA for early-stage Dupuytren's?

I think flojos suggestion with radiotherapy for the early stage is most interesting;
fo me it was the only causative treatment getting to the point where the disease
apperas to be active - NA or any type of surgery will not interfere with the bad
guys i.e. the growing fibroblasts (the mother cells of all fibrocytes) which produce
the nodules. Only radiotherpy can prevent these bad guys to continue with their
work ... its really convincing to me!

What shall a needle or knife care for these cells ? If you are lucky, they don't
recognize the trauma, but otherwise the may get wild and cause further growth.

07/06/2010 00:37
LubaM. 
07/06/2010 00:37
LubaM. 
Re: NA for early-stage Dupuytren's?

I was and still am fortunate not to have contracture in the PIP and DIP joint. Even the metacarpal joints were affected very little, mostly in my thumb. DD was just busy doing it's thing in my palm.
If you don't have any contracture but active DD, RT will likely work to prevent contracture. RT helps with the nodules but it will not release cords that have already contracted. My intent with RT was to keep DD from progressing and I didn't expect or care if it made it better, however my RT did reduce the tightness in my palm but not completely. I took that as an unexpected bonus.
Not sure I answered your question. Feel free to ask me or others. This is a very helpful group of people
.

Flojo has said it all....totally agree with her....From my own experience I believe that you should do all you can to avoid having the PIP and DIP joints involved. I had/have a very bent pinky finger on my right hand. The PIP joint was at 90 degrees, in addition the DIP joint of the same finger was also involved and was bent upwards. The finger looked like a reversed letter Z in what they call a boutonniere deformity. I have had 2 NA's on the same finger four years apart, the latest one in March of this year. Although at first successful, both times the contracture returned. Although the PIP joint is now at about 25-30 degrees, a great improvement from 90 degrees, I can see and feel it very slowly progressing. That is the "bummer" with a PIP deformity, especially in the pinky finger, a very stubborn one to correct.

On my left hand, I had multiple nodules, tightness, itching and burning. I had radiation in Nov. 09 both on my left hand and left foot (I have LD) and I believe it has stopped the progression of the disease. I wish I had known about radiation when I started to have problems with my right pinky, it would have saved me alot of aggravation.

Early intervention is the way to go with this "weird" disease.

07/06/2010 02:48
flojo 
07/06/2010 02:48
flojo 
Re: NA for early-stage Dupuytren's?

Luba,
So sorry the second NA isn't lasting. I'm glad that at least it's better.
There is no manual, no prescription, no prognosis, absolutely nothing that applies consistently to this disease other than it is weird. I'm glad that this site and the people on the Forum provide information about treatment options that others can use to make decisions about what to do. If it hadn't been for this Forum, I don't know what I would have done or how my hands would be by now. Thanks, Wolfgang and Dupuytren Society, for making this possible!!

07/06/2010 04:58
LubaM. 
07/06/2010 04:58
LubaM. 
Re: NA for early-stage Dupuytren's?

flojo:
Luba,
So sorry the second NA isn't lasting. I'm glad that at least it's better.
There is no manual, no prescription, no prognosis, absolutely nothing that applies consistently to this disease other than it is weird. I'm glad that this site and the people on the Forum provide information about treatment options that others can use to make decisions about what to do. If it hadn't been for this Forum, I don't know what I would have done or how my hands would be by now. Thanks, Wolfgang and Dupuytren Society, for making this possible!!
Thanks Flora...
I'm not sorry I did NA the second time. For me NA is the only option for a contracted finger....for now.... until I decide if I want to go the Xiaflex route. I waited more than six years between NAs and I'm hoping that it will take that long again until I have to do something again. In the next few years maybe something will come up. I know for sure I want to avoid surgery at all cost.

I am always so grateful to this Forum for all the wonderful information shared by all and I am happy that those of us with some experience/opinion can maybe help others who are looking for answers.

07/06/2010 11:26
patandpaula 
07/06/2010 11:26
patandpaula 
Re: NA for early-stage Dupuytren's?

Hi Luba,
I was wondering, you said the DIP and the Pip joint on your pinkie were both involved. Was that from a cord coming up from your palm or just from nodules? In my case, there are no cords coming from my palm, but the pinky has a large nodule that is causing it to bend at the PIP joint and possibly the top joint (is that the DIP?) seems to be bending also.
I can see it getting worse day by day.

Paula

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