Dupuytren's Contracture aka Viking Disease

Rasputin

Rasputin

New Member
Does anyone else here have this hand condition? Mine actually started several years ago in a benign way, but in the last 2 years has become an issue. My right pinky finger started drawing down toward my palm and the finger next to it started following. I went to a specialist and got injections into the hard lump that had formed in my palm just below those fingers. Then went back a couple days later and had the fingers pulled back into (nearly) normal position.

It was good for a while but, unfortunately, the fingers are drawing down again and now my index finger is as well. It really isn't painful and not a big problem, yet, but the condition keeps accelerating. It's an affliction that is more common to people of northern European descent, especially Scandinavia. At least it got me started researching it and discovering much more about the Viking culture, so it's not all bad.
 

I don't have it and don't know much about it, but I remember having once heard of it.

Did anyone else you know of, in your family have it?
What general age did you first become aware of having it? Does it effect much of what you can do with your hands?
 
I have it slightly, mostly in the form of hard knot in left palm but it seems much better since I've been massaging my achy shoulder (with my left hand) with a prescription ointment, Diclofenac Sodium Topical Gel. Coincidence or ???????? I don't know.

I have an acquaintance who has the same affliction and his affects not only his hand but another body part which I, being female, will not have to worry about.

My genetic make-up includes 25% Scandinavian
 

Yup, I've got it....2 fingers on each hand. Mine started perhaps 7 or 8 years ago. I checked in with the doctors/specialists 4 or 5 years ago, and there seems to be 2 options....Xiaflex injections, and surgery. The Xiaflex is Very expensive....my insurance claims they would cover most of the cost s....but, there is a very good chance that it can return, with these injections. Presently, it hasn't gotten any worse in the past 3 or 4 years, and I still have a good grip, etc.....just have to be careful washing my face, so I don't poke myself in the eyes. I've pretty much resigned myself to living with it, unless it gets much worse. With all my outdoor activities, I can ill afford to be without the use of even one hand for weeks/months of recovery. So long as I can still drive, run the mowers and grip the chainsaw successfully, I will put up with this "affliction".
 
I have it too. So does my dad. Mine is only in the right hand and only in the last year has the pinky curl gotten to the point where it starts getting in the way. If I don't make an effort it gets trapped in the curl when shaking hands etc. I also have the knots in my palm with the hard cord running up into the fingers. My hand doc said pretty much the same thing, injections can help but it's likely not permanent. He's reluctant to do surgery except in the most extreme cases. He says there are just too many little things in the palm/hand that are at risk when doing surgery.
 
Glad I'm not alone, although I really don't wish it on anyone else. It's probably more annoying than anything, and yes, Don M. you have to be careful not to poke yourself in the eye. It even makes washing your hands more difficult. The Xiaflex injection was what I had done and I can see now that it was pretty much a waste of time. I lucked out and got a grant from the "Wellness Foundation" to pay for my copay that was a whopping $1500. A friend of mine's wife had surgery on her to correct hers. It seems to have worked out pretty well, but there are no guarantees.

I'm not even thinking of surgery Dr. Jekyll, due to the the probability, as you mentioned of something worse occurring.
 
Kaila said:
I don't have it and don't know much about it, but I remember having once heard of it.

Did anyone else you know of, in your family have it?
What general age did you first become aware of having it? Does it effect much of what you can do with your hands?
Click to expand...
Kaila, I think my mother had it to a much lesser extent, but it was never diagnosed. I started noticing it at approximately age 60 with hard knots and dimples down into the skin in my palm, near the fingers. I still have plenty of strength in my fingers for grasping, but can only open my hand up about three fourths of the way. Don't know where it will end up, but it isn't something that's really worrisome yet, just annoying.
 
Thank you, @Rasputin
for your sharing about this , so that others and I, can learn about it too.

I hope it remains mild enough for you , and for the others who posted here, above in this thread,
and for any others of us who might find ourselves or someone else we know, with that.
 
One of the problems with Dupuytrens is that it's hard to find a doctor or hand surgeon that seems to know much about current treatments. It's really appalling. You need to take control of this yourself and do your own research. The most important thing you can do is to find a hand surgeon who specializes in Dupuytrens and find out what your options are from them. Two of the best from my experience are needle aponeurotomy to relieve the contracture and radiation therapy to prevent progression. Both worked for me.

Here's a great website with much information including a list of Dupuytrens specialists.

https://www.dupuytren-online.info
 
Yosh said:
One of the problems with Dupuytrens is that it's hard to find a doctor or hand surgeon that seems to know much about current treatments. It's really appalling. You need to take control of this yourself and do your own research. The most important thing you can do is to find a hand surgeon who specializes in Dupuytrens and find out what your options are from them. Two of the best from my experience are needle aponeurotomy to relieve the contracture and radiation therapy to prevent progression. Both worked for me.

Here's a great website with much information including a list of Dupuytrens specialists.

https://www.dupuytren-online.info
Click to expand...

That's great info. One thing I might ask about though, is the final $ cost of treatment to the individual. As medical insurance goes, even with (for instance) a quality Medicare Advantage Plan, what is the burden of payment going to end up being? Many of us, myself included, don't have thousands of dollars available for the remainder once the insurance has paid its part. It then, unfortunately, becomes a "need vs. dollars" issue.
 
Rasputin said:
That's great info. One thing I might ask about though, is the final $ cost of treatment to the individual. As medical insurance goes, even with (for instance) a quality Medicare Advantage Plan, what is the burden of payment going to end up being? Many of us, myself included, don't have thousands of dollars available for the remainder once the insurance has paid its part. It then, unfortunately, becomes a "need vs. dollars" issue.
Click to expand...

Nearly all of my costs were covered by my ACA health care plan and then after I turned 65 by my Medicare supplement. I'm in Minnesota which has good health care plans. The needle aponeurotomy is much, much cheaper than the Xiaflex procedure. It's about at 20 minute procedure. The radiation therapy (RT) was expensive, but insurance covered it all. The radiation therapy doctor at the University of Minnesota called the insurance company and made sure it was covered. I had a second RT procedure on my other hand when I was older and Medicare covered it.

I know some people have gone to Hamburg Germany for radiation therapy where it was first developed. The cost of the trip and treatment was less costly than treatment in the US. All this is on the web site I referenced above.

Good luck.
 


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