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A New Boy on the DD Block .... with yet more questions ...
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03/22/2016 16:26
wach 

Administrator

03/22/2016 16:26
wach 

Administrator

Re: A New Boy on the DD Block .... with yet more questions ...

I agree, not much to see on your hand. You should be aware that by far the most people with signs of DD never need any treatment in their whole life. If you have no active, quickly growing nodules and no pain, you are in my view not really a candidate for radiotherapy. You might also have a look at "Who should be treated?" on http://www.dupuytren-online.info/radiation_therapy.html .

Wolfgang

03/22/2016 16:39
Stefan_K. 
03/22/2016 16:39
Stefan_K. 

Re: A New Boy on the DD Block .... with yet more questions ...

And: without cord no contracture

03/23/2016 08:02
meunier 
03/23/2016 08:02
meunier 
Re: A New Boy on the DD Block .... with yet more questions ...

Dear Wolfgang and Stefan,

Thanks so - as ever - for yours. The reassurance comes with much concrete relief. Bless you.

Can I just ask - so I best understand - when you say 'pain': - Where would one most readily experience it? Would it most like be associated with a cord? Where might it most likely be centred? Around a nodule. Is a cord a series of nodules in a strand? (So sorry to sound simplistic here. I am, proudly, a layman in this regard after all.) I only ask this in light of when best to consider getting RT ... the ball now having been bounced onto my side.

Last Friday I thought I noticed some pain in the fat side of my left hand palm when pressing down on the flat in front of the keyboard. Still, that could well be anxiety. It has not reoccurred and was but momentary at the time. Earlier this week too I thought I felt a stressful tension further up in my forearm on the right side; but again that pain was not severe - was certainly not what I would call cramp - but a tightness - and, of course, too may well have been actioned merely through the suggestion of distress.

Forgive me if this sounds pedantic. I realise it most likely is. It is only that I certainly do not know ... and perhaps what frightens me more than anything else is the fact that the good doctors themselves don't appear to really understand ... (i) what causes DD (so much for a cure until they do) and (b) even WHY the radiation appears to work in halting this condition for some people which it apparently does.

As ever, bless you for ALL.

03/23/2016 09:21
Stefan_K. 
03/23/2016 09:21
Stefan_K. 

Re: A New Boy on the DD Block .... with yet more questions ...

Meunier, regading the question of nodules vs. cords, I quote from one of the excellent texts on this very website at http://www.dupuytren-online.info/dupuytr...ntracture.html:

"Dupuytren's contracture, or rather Dupuytren's disease, typically starts on the palm of the hand with a small nodule or several nodules that can be felt (palpated) and are initially not very hard. There is indication that the disease actually starts earlier with changes in the tissue underlying the skin. Because those changes are on a microscopic level, they generally are not detected and nodules are typically the first indication of Dupuytren disease.

The next stage is the development of cords along tendons. In most cases the fourth or fifth finger is affected first but nodules can also appear throughout the palm, sometimes in the digits, and in rare cases even elsewhere. Typically Dupuytren's disease tends to stabilize temporarily, but the nodules and cords start growing again by degrees over several years. Eventually, as the cords thicken, the contractive forces increase and bend the affected fingers towards the palm (there is actually some indication that there is no real contraction but that the relaxed, bent finger position is fixed by the cord and thus creates an extension deficit. The effect is the same: the finger can't be stretched anymore, resulting in Dupuytren's contracture). A more detailed description of the growth process and the related pathophysiology of Dupuytren's contracture can be found in e-medicine-Revis."

I wouldn't base the decision for radiotherapy on pain, but on the state and evolution of nodules, cords and contracture. that would be for a competent specialist to determine. From my experience, as a patient and otherwise layman, pain typically occurs when you press too strongly on a hard nodule, or when you overextend a tight cord.

Yes, the comprehension of what causes DD in certain individuals and determines its evolution is still incomplete and progressing. It seems that in individuals with an (inherited) predisposition strain and injury can trigger the formation of collagen nodules and cords. Radiotherapy has been shown to slow down, stop or shrink these, or even make the small ones go away. It is not an exact science (yet), though, and the medical community and we as patients are still learning. I can see two of probably many more reasons, including genetic difference, why radiotherapy isn't necessarily an actual, definitive cure: a) It is more effective in some stages of the disease than others, and b) new injuries may restart the process.

03/23/2016 22:04
meunier 
03/23/2016 22:04
meunier 
Re: A New Boy on the DD Block .... with yet more questions ...

Thanks so, Stefan. Your response gives so many answers in the clearest format I have seen thus far.

I have one nodule above the skin on the left hand and it is soft and of the 'tomato/fleshly coloured variety' that they seem to feel is most positive in terms of RT response. Certainly I now have the puckered (dimpled? Not certain) skin that I've read about and a somewhat leathery effect overall which too I've read is a symptom. Outside of that everything works thus far. I am scheduled - at this point in time - for RT commencing 4th April. I just pray that my fingers stay rightfully stretched until that time. (Otherwise Easter will have much to answer for.) I am hopeful. It says that it takes months if not years ... and I only found the little nodule which is even now soft in last month. I so pray - at least for this period of time - that I am in league with the 85% crowd. I keep telling myself that THOSE odds - unlike some others - are in my favour.

Question - Do you always see the cords? I mean you would would'nt you? You would have to I should think. They can't just be buried beneath the puckered skin can they? Invisible to human sight and touch. Or can they? Feeling along the tendon line of my ring finger it still feels quite slim fit at the moment. It is tender at the place of the nodule and just beneath but not otherwise around. There would have to be some obvious thickening in that area if there were to be a cord right? At least there seems to be in goodly number of photos I've now seen of cords.

Bless you ALL for your support.

03/23/2016 23:40
dawnemsw 
03/23/2016 23:40
dawnemsw 
Re: A New Boy on the DD Block .... with yet more questions ...

It's been nice to read this back and forth between you more seasoned folks. I am new to this DD world (last 6 months) with 2 nodules and one palpable chord on my left hand. it's very early so I'm interested in hitting this hard in order to get rid of it while it's still new. Can anyone comment on radiotherapy? I've seen it on the internet but have not heard a lot of chatter about its efficacy.
I've begun using the vitamins on this site as well as the Vit. E and DMSO external stuff (have for about 3 weeks) with no obvious result. I know that's early for much, but I was hoping for something more spectacular. Any thoughts?
Thanks, Dawne
Whoops...just saw that you had made some comments about radiotherapy. Have you done it yourself or just reporting what others have noted?

Edited 03/24/16 02:06

03/24/2016 05:13
wach 

Administrator

03/24/2016 05:13
wach 

Administrator

Re: A New Boy on the DD Block .... with yet more questions ...

Hi Dawne,

you will find personal stories, including radiotherapy, on http://www.dupuytren-online.info/dupuytr...xperiences.html. I myself had 8 nodules treated and RT worked for 7 of them, meaning it put them to rest and some even vanished. The 8th unfortunately kept growing. I was probably too late with treating that one.

"I've begun using the vitamins on this site" - that might have been be a different site. This site does not recommend taking vitamins or other supplements for treating Dupuytren's http://www.dupuytren-online.info/dupuytren_anecdotal.html . If someone reports that vitamins helped then we respect this personal experience and don't delete this post from the forum but in general vitamins are useless for Dupuytren's.

Wolfgang

dawnemsw:
It's been nice to read this back and forth between you more seasoned folks. I am new to this DD world (last 6 months) with 2 nodules and one palpable chord on my left hand. it's very early so I'm interested in hitting this hard in order to get rid of it while it's still new. Can anyone comment on radiotherapy? I've seen it on the internet but have not heard a lot of chatter about its efficacy.
I've begun using the vitamins on this site as well as the Vit. E and DMSO external stuff (have for about 3 weeks) with no obvious result. I know that's early for much, but I was hoping for something more spectacular. Any thoughts?
Thanks, Dawne
Whoops...just saw that you had made some comments about radiotherapy. Have you done it yourself or just reporting what others have noted?

03/24/2016 05:17
wach 

Administrator

03/24/2016 05:17
wach 

Administrator

Re: A New Boy on the DD Block .... with yet more questions ...

They can, for sure. You might just see a nodule and the cord might be thin and is buried deeper.

meunier:
...
Question - Do you always see the cords? I mean you would would'nt you? You would have to I should think. They can't just be buried beneath the puckered skin can they? Invisible to human sight and touch. Or can they? ...

03/24/2016 05:49
meunier 
03/24/2016 05:49
meunier 
Re: A New Boy on the DD Block .... with yet more questions ...

wach:
They can, for sure. You might just see a nodule and the cord might be thin and is buried deeper.

meunier:
...
Question - Do you always see the cords? I mean you would would'nt you? You would have to I should think. They can't just be buried beneath the puckered skin can they? Invisible to human sight and touch. Or can they? ...



Thanks so for letting me know this, Wolfgang. I am so grateful for your honesty. This, I fear, somewhat petrifies me.

I know that everyone is different of course, but I wondered in the case where the RT did not work for your good self, how long had you had the nodule when you had treatment? What do you think separated that one from the seven successful others? Had they been at a much earlier state of development? Did you have a cord you could see with that nodule? I wonder - given this possibility - would that not make the 'wait and see' risk considerably more risky? How I wonder do they then come up with the 85% who never will need treatment? I ask this only as a person who has 12 days to wait until he has RT on his left hand with its one nodule which - at least by my measurement - has not continued to grow - well, certainly not substantially that's for sure - and if anything it has slightly flattened but that may just be my imagination - nonetheless it is still soft - certainly it is above the skin level mark. I am ONLY waiting because I HAVE TO due to these Easter holidays which encroach on two calendar weeks making the Monday to Friday schedule otherwise impossible. I selfishly would easily forgo Easter this year - as I fear I am one who will only be progressively and genuinely more and more concerned about any 'buried truths' during this interim.

I cannot thank you enough for your support, Wolfgang.

Edited 03/24/16 08:32

03/24/2016 07:20
wach 

Administrator

03/24/2016 07:20
wach 

Administrator

Re: A New Boy on the DD Block .... with yet more questions ...

Hi meunier,

no need to worry about a couple of weeks or months. Those won't make a difference but a couple of years might make a difference in some cases. Have a look at "Radiotherapy - when to apply best?" on http://www.dupuytren-online.info/radiation_therapy.html . If RT is applied 2 years after you first observed the nodule the probability that it regresses after RT is already fairly low and the probability that the nodule progresses has increased strongly. But a few weeks won't matter.

Wolfgang

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