New dupuytrens patient Finland |
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06/17/2015 07:37
Stefan_K.
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06/17/2015 07:37
Stefan_K.
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Re: New dupuytrens patient Finland
Hello Aku.
I see no need in your case to even think about (invasive) surgery. That would be the ultimate step and based on your description you seem to be very far from that. You may one day, when you have contracture of a finger, be a candidate for NA, a very simple procedure unlike surgery, or RT. Meanwhile, I'd follow Prof. Seegenschmiedt's advice and keep monitoring your hands, perhaps taking notes and photos.
Opinions on the potential risks for targeted RT of hands vary. I was myself prepared to try it and have not yet made a decision because I am not sure it is the right moment and worth the cost and inconvenience. I have been thinking about going to Hamburg for several months because the contracture of my right hand pinky seemed to start again and nodules grow, but it has since receded and I would have falsely attributed improvement to RT had I done it. So I am still undecided myself, although I don't think that if done right as apparently in Hamburg there is significant health risk from RT to small areas of the hand.
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06/17/2015 08:53
newman
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06/17/2015 08:53
newman
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Re: New dupuytrens patient Finland
Hi Aku I would agree with Stefan. I was diagnosed around you age and did not undergo surgery until some 20 odd year later. Wait and see as the Prof has recommended. Take some photos as a record. It is difficult to self palpitate your own hand. Have your sister do it mark any nodules and photograph them. Professor Seegenschmiedt explained a simple method to palpatate the hand - imagine gently running you finger over the skin of a ripe peach and feeling any imperfection. Try this method. Regards.
Edited 06/17/15 19:36
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10/12/2015 16:59
Aku_
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10/12/2015 16:59
Aku_
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Re: New dupuytrens patient Finland
Hello again
And thank to Newman and Stefan. Sorry for not responding to your messages. At the time i was really stressed out on this(and still am) so kinda just ignored thinking about it or doing anything. Time for a new update. After my last message i did my best to ignore what was going on on my hand, i continued going to a massage therapist who did research to treat the nodules on my hand. I go there about once a month. The small nodules seemed to stay stable untill beginning of august when i noticed the one on my ring finger tendon had started to grow. About a month later it was definetly bigger and now two months later it is visible. Also, i think it may have a cord developing. I guess my question now is, am i experiencing a agressive version of DD? I have gone from no nodules(that i knew of) to two visible nodules with cords in less than 12months? Am i already too late for RT(bedause i have cords)? One thing i haven´t really found any info on is if it is a possible option to wait and not do RT untill after a surgery(if one is needed). My reasoning is that this way i could leave the RT option open so that if i ever need surgery and the DD flares i could still use RT in that situation to control it.
Again, really thankful of any input you might have.
BR
Aku
Edited 10/12/15 21:17
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10/12/2015 20:36
spanishbuddha Administrator
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10/12/2015 20:36
spanishbuddha Administrator
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Re: New dupuytrens patient Finland
Hi again
Are the newly developed cords hard or soft? If softish then it's still early and perhaps will go quiet again. But to answer one question you can have RT if you have cords and other symptoms that the disease is active, as long as the hand is quite flat (I had RT with cords that had not contracted).
Also people on here have had NA, Xiaflex and surgery to straighten a contracture then had RT when the disease flared again. So that is a possibility.
It's difficult to advise what to do. Perhaps consult and line up a radiologist, also the same with a surgeon who can do NA or Xiaflex. Then you are ready to decide almost at the last moment whether to get the RT before contracture, or wait and see how it progresses.
Best wishes
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10/13/2015 13:39
newman
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10/13/2015 13:39
newman
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Re: New dupuytrens patient Finland
Hi Aku Firstly I wouldn't stress too much over Dupuytrens ,cross your bridges when you come to them . I am in my 70's still have full function and strength in both hands having had surgery/skin grafts/Radiotherapy/PNF or NA as it is called in the states. I am still pretty fit and active. I am not sure if remedial massage will do much good I did all that, feels great at the time . You need to protect you hands ,when doing any physical work . These days there are really soft cotton working gloves on the market ,that have either rubber knobs on the surface or some silicone type product for grip. Should you choose the rough cheaper leather gloves for gardening , I would suggest using plenty of hand crème or Vasoline on you hands and then insert them into the gloves .(softens the leather as well as protecting you skin.) Don't use screw drivers, which put extreme pressure in the palm or power tools that cause vibration for any extend periods. Should you find that contraction is starting you might experiment by using a night splint ,which is a passive splint and does not exert any pressure on the finger to straighten it . Dr Meinel of Wuerzburg Germany has advocated the use of night splints for decades.
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10/13/2015 23:00
Rdevin
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10/13/2015 23:00
Rdevin
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Re: New dupuytrens patient Finland
Hi Aku
There are many treatments for various stages and one is surgery at the latter stages. I had surgery on the little finger and it took some 12 months to get it back to somewhere useful, weaker, but useable.
On the other hand I have 2 nodules and after reading many reports that Bio Oil helped, some say yes and some say no, I tried it and for 12 months used it daily on the 2 nodules. One has virtually gone and it was quite aggressive having already bent the tip of my finger over down and to the right. The second is holding its own and maybe getting smaller.
It also seemed to help on the scar from the surgery.
I am not suggesting this as a cure all but it is safe and you can use it at home daily (or 2 times) and it may help a little. It does take time and usually 3 months before a small result so you will have to maintain the treatment which is often difficult!!! Best RD
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10/14/2015 15:22
Aku_
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10/14/2015 15:22
Aku_
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Re: New dupuytrens patient Finland
Hello
Thanks again for your input. To SB, i think the cords are soft as i can lift my fingers off the table(the table top test). No contarction. I have visited the Hamburg clinic once last may for consultation. Oddly i havent received an answer from them to my emails in july and august. I guess ill have to try again or maybe call them up. I think i have my plans sorted if i need treatment, its NA -> xiaflex -> surgery i recon, in that order. Xiaflex is available here public healthcare, also NA but they dont do it much here so it might be best to travel to France. About RT im not so sure. In the mean time it seems to be the "only" action i could take in hopes of avoiding the more invasive alternatives in the future. Not sure about the benefits or long time affects but also at the same time worried about missing the buss by waiting too long. Not easy to decide.
Ill check out bio oil, guess at least it cant do any harm :) And will go see the surgeon to ask about night splinting. About massage, i dont think it does much to the nodules or cords. But since i started it, a small "pit" next to a nodule has dissapeared so it might help with skin involvement. BR
Aku
Edited 10/14/15 18:55
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10/14/2015 15:43
wach Administrator
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10/14/2015 15:43
wach Administrator
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Re: New dupuytrens patient Finland
Hi Aku,
just a little correction: there is a long-term study on the effect and benefit of RT for Dupuytren disease and that study includes an untreated control group. It's the first reference on http://www.dupuytren-online.info/radioth...literature.html. You can read the first few pages on http://link.springer.com/chapter/10.1007...-642-22697-7_44
Wolfgang
Aku_: ... About RT im not so sure. There is no real controlled study with reference groups and that is why its not available here in Finland. In the mean time it seems to be the "only" action i could take in hopes of avoiding the more invasive alternatives in the future. Not sure about the benefits or long time affects but also at the same time worried about missing the buss by waiting too long. Not easy to decide.
...
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10/14/2015 16:03
Aku_
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10/14/2015 16:03
Aku_
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Re: New dupuytrens patient Finland
Hello Wach
Ok, this comment i got from a friend of mine who is a MD but in a different field. I sent some of the links i have about RT on dupuytrens and asked for his oppinion on the "evidence". I sent a link to the dupuytren sosiciety page listing research(among others) but not the one direct link to the study you have here. I edited my post to remove my comment about the reference group. Don´t want anyone to have doubts based on my writings and will discuss it again with my friend after he reads the link submitted by you.
Thanks
Aku
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10/19/2015 14:29
staxman
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10/19/2015 14:29
staxman
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Re: New dupuytrens patient Finland
great thread.
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