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New here. Learning a lot.
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08/19/2013 22:34
Neshobe 
08/19/2013 22:34
Neshobe 
New here. Learning a lot.

Who I am: Female, older. Ok, I'm 70. I've known I've had something wrong with hands for some time, but passed it off on other things. I live in Vermont.

My youngest brother (10 years younger) and I used to compare knuckle pads. We're not close, but have contact from time to time. Over time, he developed Duputren's contractures. Last year when I saw him, his contractures were very severe, as bad as any of the photos I've seen. He explained what he had and that surgery could help but that there was no cure. He told me he hadn't decided about surgery yet.

I began researching DD to understand what he was dealing with, and it didn't take long for me to recognize that I had early stage of disease: some lumps and small cords, stiffness in fingers. I recalled times when hands would hurt a lot, then pain would go away, leaving additional stiffness and lumps and cords. Both hands, right one worse. Heat helped. I'd been doing heat on my hands for years. My fingers have always hyperextended and my left hand still does. Right doesn't, and the middle finger has slight curvature and is stiff. I drop things or don't quite grasp them. Awkward.

A couple months ago, I thought I'd somehow sprained my right ring finger. Very painful, along with palm of hand. Swelling in palm and a "drawing" sensation. After a few days, pain and swelling went down. But now nodules very noticable and I have new cord (small) into base of ring finger, extending past middle joint. This one looks like it is going to first joint of finger. Both middle fingers stiff.

Positive family history: we were able to identify several people who almost certainly had DD, including father, a great-aunt (my father's aunt), her daughter, probably one of my daughter's as well. Two other brothers are no longer living, but we're pretty sure they did not have DD. Am doing additional search for others in family, and am pretty sure I'll find some.

There is no question in my mind that I have DD. My pcp dismisses; thinks DD= bent finger (mine is only slightly curved), refused to discuss. Bet you can guess what I think of that. My other dr recognized early symptoms right away, though he is a specialist in another field.

So more research online, found Duputren Foundation and this forum. Yay.

Now looking for dr to do evaluation. I am probably N/1 going on N now, but need dr evaluation so I know what is going on and anticipate options. Do not want to get much worse. Hoping I can get treatment on Medicare. I am an active person, my favorite activities involve my hands: spinning, weaving, gardening, writing, art. Oddly, the DD does not hinder spinning at all, but it does get in the way of weaving, writing and cooking (I drop or knock over things a lot). Pulling weeds and mowing are difficult already, because of the stress on my fingers. Also, many of the things I don't like to do, like housework. So I figure Medicare can pay for NA or hire me a housekeeper.

This is long, but it took me longer to type than it should. Right ring finger still sore and getting stiffer. I do exercises to loosen hands up every morning.

Thanks to all of you for sharing your stories. I need to share this with other people who understand. Looking forward to getting to know you, and learning from you.

Edited 08/20/13 02:00

08/19/2013 23:51
callie 
08/19/2013 23:51
callie 
Re: New here. Learning a lot.

Welcome !! There is a considerable amount of information on this site. Ask questions and you will get answers. Everyone's condition seems to have their own characteristics, and that is important to take into consideration. Generally the later in life you are affected, the less serious the disease. Some people just deal with it for the rest of their lives. Sometimes Dupuytren's stabilizes, while other times it gets worse.

08/20/2013 00:21
Neshobe 
08/20/2013 00:21
Neshobe 
Re: New here. Learning a lot.

Thanks, Carrie. For quite a while, this was just something that was there and didn't get in the way xcept for flareups now and again. I ascribed it to another health condition I had (which may indeed have been a precipitating factor).

But recently it seems to have wakened and become active, with rapid changes. I'm hoping it just settles down again. I want to establish a functional base line for where I am right now. They used to wait until the disease had progressed a fair amount before treatment, but I notice there seems to be a move toward treating earlier. Perhaps because less invasive treatments are available now. If my situation continues to be active, then I want a plan in place for addressing it.

Looking at the active research trials, the ones that seem most applicable to me are in Denmark. And I like Denmark. Oh, well.

08/27/2013 13:00
mcdog 
08/27/2013 13:00
mcdog 
Re: New here. Learning a lot.

Hi, also living in Vermont. have had 5 or 6 surgeries on right hand over the past 15? years. none for 7 or 8, but am thinking will need to have something done again soon. hope to avoid surgery, as each one seemed to take me one step ahead and two back. am hoping to find someone in Vt or nearby to do non-invasive treatment. have just started looking, and stumbled onto this forum. will post anything i find that may be of interest to you, or any physicians that i may consider.
i also have plantar fibromatosis in one foot, but have not had any treatment for that.

08/27/2013 13:25
callie 
08/27/2013 13:25
callie 
Re: New here. Learning a lot.

What do you mean, "non-invasive treatment"? What is the condition of your hand right now? Have all of the surgeries been for Dupuytren's?

08/27/2013 16:15
mcdog 
08/27/2013 16:15
mcdog 
Re: New here. Learning a lot.

i'm hoping i can have the NA done or some other non-surgical procedure. My first operation by an orthopaedic surgeon was to try to regain full use of my ring finger- right hand about a year after i broke it. at that time, the DR. told me i had dupuytrens and suggested a "release" as long as he was working on my finger anyway. at that time, i had only small lumps on my palm which i thought were callouses. they didnt hurt or bother me in anyway, and my fingers were not curled. After this "release", they then started to curl. over the next 6 or 7 years i had 4 or 5 more operations by a different surgeon, 2 or three (its been a while, cant remember specifics), for releases and one or two to undo problems caused by scar tissue due to the operations.
i have come up the name of a doctor in Montpelier Vt: Dr. Christian HG Bean and may schedule an appointment to see what he has to say. Needless to say, my experience with the "release" operations in the past has been less than positive.

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