| Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal? |
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07/12/2013 16:30
mbird 
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07/12/2013 16:30
mbird
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Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?
Hi, I'm new to this site:) I broke my wrist and several bones in my left hand 16months ago. I have had 3 surgeries on it. After 2nd surgery I developed Dupytrends on my left hand, during 3rd surgery the nodes were also removed. Now I have 4 new nodes on the left hand, plus 1 is growing on the right hand. Is there anything I can do to stop them from getting bigger? And is there anything I can do to stop them reforming after they have been surgically removed?....Thank you for taking the time to read this! M
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07/12/2013 16:57
callie 
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07/12/2013 16:57
callie
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Re: Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?
1) it is unusual to remove Dupuytren's nodules by surgery.
2) The normal recommended procedure during the formation of nodules and before significant contraction is irradiation. I did this about six months ago and so far it has been a great success. Dupuytren's treatments vary from person to person. Look above under "Treatments" to find out more. The sticky point with the irradiation is whether or not it will be covered by insurance. More and more the procedure is accepted by insurance companies. There is very good guidance on this forum so keep asking questions if you are concerned.
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07/12/2013 19:08
spanishbuddha  Administrator
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07/12/2013 19:08
spanishbuddha Administrator
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Re: Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?
Hi mbird
I agree with callie's answer. But, nodules may not lead to cords, or contracture, or at least not quickly. Often they stabilise of their own accord and go dormant for many years. It is a difficult judgment call as to whether radiation therapy is necessary or not. As an example, I developed a nodule spontaneously in Frebruary this year. It was quite sore. Then a cord developed from it, then another nodule. Without other symptoms my plan is 'wait and see'. Any hint of contracture or additional symptoms I may consider radiation treatment.
There are a number of risk factors, including trauma, injury (surgery), other conditions including ones related to lifestyle, all listed on this website. Check them out and see what you can do if any apply to you. There is also a predisposition (diathesis) in which case if this applies to you it adds weight to considering having radiotherapy rather than waiting.
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07/17/2013 12:27
mbird
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07/17/2013 12:27
mbird
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Re: Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?
Hi Callie, Thank you for your reply. I am trying to famializer myself with all the options that are available to me, besides surgery. I already have had 2 nodes removed surgically, so now what Im looking for is to keep the 4 new nodes small. All the nodes are in the palm of my left hand, but one has now started on the palm of my right hand. I will take any help or advise as I have a Drs appointment in about 2 weeks and need to be able to ask pertinent questions, Thanks mbird.
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07/17/2013 12:44
mbird
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07/17/2013 12:44
mbird
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Re: Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?
Hi Spanish Buddha, Thank you for your reply. Im a newbie to this site. Im trying to famialiarize myself with all options available to me. I have had 2 nodes removed surgicially, but as I now have 4 new nodes in the palm of my left hand and 1 on the palm of my right hand, Im looking for the best way to keep them as small as possible without surgery.
Your point about Insurance cover is also very valid and I hadn't given it too much thought until you raised the point. Now I will indeed be looking into my Insurance and what it covers. Im grateful for any help or advise you can give especially regarding RT. mbird
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07/17/2013 13:05
callie
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07/17/2013 13:05
callie
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Re: Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?
This is important. Often, people will get nodules and then Dupuytren's will go dormant for years, perhaps decades. Also, not all Dupuytren's leads to contracture. But, everyone is different. At this time irradiation is your only preventative choice at this time. I have had surgery 11 years ago on one hand (little finger, 90 degrees contracture) and RT on the other hand about 6 months ago. I would suggest that you seriously consider RT at this time.
The website below is the "hammer" that has had considerable influence when trying to convince an insurance company to cover RT. My RT ended up costing about $1,800 out of pocket after the insurance coverage.
http://www.aetna.com/cpb/medical/data/800_899/0800.html
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08/01/2013 20:22
pixi 
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08/01/2013 20:22
pixi
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Re: Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?
Callie, always good to see you here.
As I've mentioned in other posts, none of the specialists I've approached (in the UK and US) have wanted to do RT on me because of my age -- I'm 38 years old and still want to have children.
Would you mind telling us how old you were when you first underwent RT, and if you know anything about the age considerations?
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08/01/2013 21:42
callie
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08/01/2013 21:42
callie
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Re: Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?
pixi,
I was 66 years old for RT. There should be quality answers for your questions about age. I would guess that there would be very few problem at younger ages, but that question should be answered by someone more knowledgeable than me. The exposure is very small and skin deep.
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08/04/2013 04:54
wach Administrator
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08/04/2013 04:54
wach Administrator
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Re: Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?
Hi pixi,
generally the risk for developing cancer increases the younger you are (mainly because you have more life time to develop cancer but also because your cells are still more active). I had my first RT at the age of 35 (now I am 65). My doctor was not concerned about my age because it seems to be not very likely to develop cancer after RT for Dupuytren's http://www.dupuytren-online.de/downloads...20Dupuytren.htm. RT for Dupuytren's also would not affect your ability to have children or increase the risk for the child (provided proper shielding at time of irradiation). I would suggest to have RT before becoming pregnant, not while being pregnant.
Wolfgang
pixi:
Callie, always good to see you here.
As I've mentioned in other posts, none of the specialists I've approached (in the UK and US) have wanted to do RT on me because of my age -- I'm 38 years old and still want to have children.
Would you mind telling us how old you were when you first underwent RT, and if you know anything about the age considerations?
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08/08/2013 18:24
pixi
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08/08/2013 18:24
pixi
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Re: Hi, Does any1 know of a treatment to stop the hand nodes reforming after removal?
Thanks, both of you.
At present I do not have any chords, but two specialists have felt "pre chords" under the skin...
In the past week I've noticed new potential nodes unders the joint of two fingers, and increased stiffness in both hands. Also another node on my foot, but I've learned to just ignore those.
I'll be 39 later this year. I guess I can try to get yet another opinion from another RT specialist.
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