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Aggressive Dupuytren's ??
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11/17/12 16:06
JNeel 
11/17/12 16:06
JNeel 
Aggressive Dupuytren's ??

I am a 68 year old white male, heritage is 1/2 Italian and the other half mixed Irish, Scotch, Welsh and ??. My mother was diagnosed with Dupuytren's Contracture at age 83, although she believes it was just a trigger finger.

I first noticed a nodule on the cord to my left ring finger 3 1/2 weeks ago. It has been diagnosed as Dupuytren's Contracture. I have not seen a specialist yet. Today it looks as if another nodule is forming on the same cord. From what I have read, forming a second nodule so quickly is an aggressive case. I have the following questions:

Is this evidence of an aggressive case?

Is this the time when RT would be most helpful?

I am located for the next 9 1/2 months in South Africa. Does anyone know of a doctor doing RT in South Africa?

If I have to return to the U.S. for treatment, does anyone know of a doctor doing RT in Atlanta?

Is this a case of the sooner the better or will waiting another 9 1/2 months be a mistake?

Does anyone know the % of patients who experience dry skin following RT?

Thanks for any help.

11/17/12 18:44
Tusk 
11/17/12 18:44
Tusk 
Re: Aggressive Dupuytren's ??

Aggressive? Maybe not.

A "diathesis" presentation is usually considered more aggressive Dupuytren's biology which includes a higher rate of recurrence among other things.

Some of the diathesis indicators are:
- immediate family with disease
- early age onset
- bilateral (both hands)
- more fingers involved
- disease on radial side of hand (index finger and thumb)
- other presentations of similar disease (feet, knuckles, shoulder, etc.)
- higher degree of nodularity
- rapid progression of disease

Edited 11/17/12 18:46

11/25/12 16:45
pia2some 
11/25/12 16:45
pia2some 
Re: Aggressive Dupuytren's ??

JNeel, I live about an 1.5 hours northwest of Atlanta. I have not found anyone in the Atlanta area who does NA. I really wish someone here did it. At this time I'm unable to travel anywhere for treatment. There is a good doctor in metro Atlanta who was involved in the trial phases of Xiaflex. He does many, many injections each week. I saw Dr. Costas last spring and had one injection of Xiaflex. But as far as NA, there doesn't seem to be anyone in Georgia that is doing it.

~ dawn

11/28/12 20:07
RetiredTeacher 
11/28/12 20:07
RetiredTeacher 
Re: Aggressive Dupuytren's ??

I think the question to ask right now is do you have any contracture? If the nodes are only growing, but there is no contracture, then I would think you have time to wait for treatment. But if your fingers start contracting, then I would think it is time to do something quickly, NA first to straighten the fingers and then RT to stop the progression. The faster your fingers are contracting, the sooner I would have treatment.

11/28/12 20:22
Tami1962 
11/28/12 20:22
Tami1962 
Re: Aggressive Dupuytren's ??

Tusk:
Aggressive? Maybe not.

A "diathesis" presentation is usually considered more aggressive Dupuytren's biology which includes a higher rate of recurrence among other things.

Some of the diathesis indicators are:
- immediate family with disease
- early age onset
- bilateral (both hands)
- more fingers involved
- disease on radial side of hand (index finger and thumb)
- other presentations of similar disease (feet, knuckles, shoulder, etc.)
- higher degree of nodularity
- rapid progression of disease
I have a check mark on all of these. What does aggressive mean as far as prognosis?

11/28/12 22:58
Seph 
11/28/12 22:58
Seph 

Re: Aggressive Dupuytren's ??

Tami1962, I also tick all those boxes although the rapid progression of disease is only from time to time. If it was rapid all the time i would be unable to function.

I don't think anyone knows what the prognosis is as I suspect there aren't that many of us. I know a number of people that have DD but I am the only one that has DD and LD both bilateral. In fact I don't know anyone outside this web site and my family with LD. I have also had frozen shoulder - both shoulders at the same time which was a real challenge.

Missing from the list is diabetes. I do not have this yet but I view it as inevitable. My aggressive gym program is an attempt to hold this off.

Biggest issue for me at the moment is the growth of nodules with no cord on my thumb through to index finger on my left hand. Also LD currently growing on the pad of my left foot just behind the toes. This growth is already starting to cause issues when I walk a lot. I am currently in Paris where walking long distances is a way of life and I am developing blisters around the new growth.

In the end though no big deal. I am 58 and have had this disease since my early teens.

I guess you can look forward to an a attack of frozen shoulder at some time and start checking for diabetes if you don't already have it.

I am a big fan of NA as it can be done again and again. Just had my third NA procedure on my right hand and will have my second NA procedure on my left hand Friday week.

11/29/12 00:45
Tami1962 
11/29/12 00:45
Tami1962 
Re: Aggressive Dupuytren's ??

Seph:
Tami1962, I also tick all those boxes although the rapid progression of disease is only from time to time. If it was rapid all the time i would be unable to function.

I don't think anyone knows what the prognosis is as I suspect there aren't that many of us. I know a number of people that have DD but I am the only one that has DD and LD both bilateral. In fact I don't know anyone outside this web site and my family with LD. I have also had frozen shoulder - both shoulders at the same time which was a real challenge.

Missing from the list is diabetes. I do not have this yet but I view it as inevitable. My aggressive gym program is an attempt to hold this off.

Biggest issue for me at the moment is the growth of nodules with no cord on my thumb through to index finger on my left hand. Also LD currently growing on the pad of my left foot just behind the toes. This growth is already starting to cause issues when I walk a lot. I am currently in Paris where walking long distances is a way of life and I am developing blisters around the new growth.

In the end though no big deal. I am 58 and have had this disease since my early teens.

I guess you can look forward to an a attack of frozen shoulder at some time and start checking for diabetes if you don't already have it.

I am a big fan of NA as it can be done again and again. Just had my third NA procedure on my right hand and will have my second NA procedure on my left hand Friday week.

Yieks I don't plan on the diabetes, but whatever. I am 50, had my 1st N/A at 43. Had surgery a few years before the N/A but it grew back quickly. Have bilateral N/A's scheduled on the 14th followed by a series of radiation. My LD started in my late 20's and is in both feet. I don't even want to get started on that. I play a lot of tennis and this stuff is really starting to affect my game. Well at least that's my excuse anyway. Thanks for the info.

11/29/12 06:19
pia2some 
11/29/12 06:19
pia2some 
Re: Aggressive Dupuytren's ??

Seph:
Tami1962, I also tick all those boxes although the rapid progression of disease is only from time to time. If it was rapid all the time i would be unable to function.

I don't think anyone knows what the prognosis is as I suspect there aren't that many of us. I know a number of people that have DD but I am the only one that has DD and LD both bilateral. In fact I don't know anyone outside this web site and my family with LD. I have also had frozen shoulder - both shoulders at the same time which was a real challenge.

Missing from the list is diabetes. I do not have this yet but I view it as inevitable. My aggressive gym program is an attempt to hold this off.

Biggest issue for me at the moment is the growth of nodules with no cord on my thumb through to index finger on my left hand. Also LD currently growing on the pad of my left foot just behind the toes. This growth is already starting to cause issues when I walk a lot. I am currently in Paris where walking long distances is a way of life and I am developing blisters around the new growth.

In the end though no big deal. I am 58 and have had this disease since my early teens.

I guess you can look forward to an a attack of frozen shoulder at some time and start checking for diabetes if you don't already have it.

I am a big fan of NA as it can be done again and again. Just had my third NA procedure on my right hand and will have my second NA procedure on my left hand Friday week.

I can check off everything on that list. Both of my hands are currently a mess. I've had a frozen shoulder that required me to go under anesthesia so the surgeon could manipulate it and free it up. I also have diabetes and lupus. I don't have any problems in my feet and I certainly hope it stays that way.

~ dawn

Edited 11/29/12 07:03

11/29/12 16:23
Tusk 
11/29/12 16:23
Tusk 
Re: Aggressive Dupuytren's ??

Dawn,

There are a number of doctors in Atlanta who do NA. In fact one trained under Dr. Eaton. She is very familiar with Dupuytren's. I've read online about some of her work.

http://www.handcenter.org/Kirkpatrick_K.htm
http://www.resurgens.com/staff/physician...irkpatrick,_M.D.

11/29/12 16:43
JNeel 
11/29/12 16:43
JNeel 
Re: Aggressive Dupuytren's ??

Thank you to all who have responded so far. I must say hearing what some of you have makes what I have so far seem pretty minor. I guess it starts small for all of us. Part of my original question was did anyone know a doctor in the Atlanta area doing RT? No one has responded to that yet.

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