Hi,

I just found your forum today and it looks like it will be very informative. I was diagnosed with Dupuytrens in October. At that time, I only had one bump which seemed to be affecting the ring finger on my right hand. Since then, it seems to have spread to my little finger and I also have some dimpling now.

I have tried to read what I could find out on Dupuytrens and have watched the NA surgery with much interest, but I get so confused about a few things. Why can't they do anything to prevent the contracture? Why do we have to wait for it to happen and then have to have the surgery to take care of it? I feel like I have to just sit, watch and wait for the contracture to take place and not do anything. One site I read said it was possible to over exercise or over stretch the cords. So what are we supposed to do???

The only risk factor I've been able to find is that I'm from northern European decent. I don't know anyone who has Dupuyrens and neither do my parents. I don't have diabetes, abuse alcolol or smoke, but one thing I have read on a couple of sites is that if you are being treated for epilepsy, that you also have a slightly higher chance of Dupuyrens. Although I don't have epilepsy, I do take a medication used to treat epilepsy. Has anyone ever heard of that?

I'm sorry to ask so many questions. It's just so nice to have someone to talk and ask questions to who understands. Thanks for reading.

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HI Snickers,

I'm sorry to hear about your diagnosis of Dupuytren's. I'd urge you to read over all the information on this website. There are a lot of people on this forum who are extremely experienced with Dupuytren's (meaning they've been dealing with it for a long time) and also very knowledgable about the disease. I would urge you to look over the section on radiation therapy. I was diagnosed with Dupuytren's last April and I just finished radiation therapy. Radiation seems to be the best way to halt the progression of the disease, and perhaps prevent the need for NA or surgery in the future. Radiation has to be done in the early stages (lumps) to be most effective. I also had some cortisone injections before the radiation, as my nodule is in the center of my hand and rather tender.

Don't worry about asking too many questions on this form....people are very helpful. Ask every question....someone will answer it for you, if they can! The reason they don't do surgery in the early stages is, as Callie mentioned, not everyone progresses to the state of having a contracture. Also, the trauma of surgery can, for some people, accelerate the progression of the disease. When I was diagnosed, I didn't want to sit around and wait to see whether mine progressed to the point of a contracture. I visited a doctor who specializes in this condition, and discussed treatment options with him, which is how I came to the decision that radiation was the best option for me. Unfortunately, many doctors and hand surgeons are not yet aware of radiation treatment for Dupuytren's.

May I ask how old you are? I was diagnosed when I was 48 and one of the reasons I sought out radiation therapy was my age...I figured I presumably had a lot of years for the disease to progress.

Megan L (Bellevue, Washington, U.S.)

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Edited 01/18/09 21:11

Hi Badchess,

I had my radiation at Mountain States Tumor Institute in Boise. I actually didn't see my doctor about it. What happened was I had a routine exam with my dermatologist for another matter and I asked her if she could take a look at my hand. My dermatologist told me she didn't know what it was and that I had to see a hand surgeon. After seeing two hand surgeons, I got on this website. I called Dr. Kline's office in Boise and talked to them. Jill, from Dr. Kline's office, told me radiation was available in Boise, but I needed to have a consultation with Dr. Kline to evaluate the situation and see if I was a good candidate for radiation. Dr. Kline referred me to Dr. Kuhn at Mountain States.

Megan L

Hi,
I have had surgery twice on my left hand (pinkie) and I was one of the unlucky ones. It seemed like the surgery aggravated the situation. Now I have nodules on both hands almost all fingers.
Questions for Megan--how long ago did you have radiation? How are your hands now? Have you heard about the clinical trials they did last year with collagen? Supposedly they had good results with these injections.
I was hoping to get those injections after they are approved--but I am wondering what would be better--collagen injections or radiation.

Thanks so much,
Bergie

Bergie, radiotherapy and collagenase are different treatments for different stages of the disease. Radiotherapy is a good choice when the disease just started and is still in the (small) nodule phase. Injection of collagenase makes sense when your finger is already contracted by 30+ degrees. But you don't need to wait for collagenase to be approved, NA basically does the same job. Have a look at our web site, not just the forum, and to get started read the pages "Dupuytren's disease", "Surgery", NA, "Radiation therapy", and http://www.dupuytren-online.info/dupuytren_collagenase.html . This will give you a quick overview of what therapies are available and their pros and cons. Tf you have any questions, don't hesitate to ask!

Wolfgang

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Hi,
I have had surgery twice on my left hand (pinkie) and I was one of the unlucky ones. It seemed like the surgery aggravated the situation. Now I have nodules on both hands almost all fingers.
Questions for Megan--how long ago did you have radiation? How are your hands now? Have you heard about the clinical trials they did last year with collagen? Supposedly they had good results with these injections.
I was hoping to get those injections after they are approved--but I am wondering what would be better--collagen injections or radiation.

Thanks so much,
Bergie

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