Hello Everyone,

I am hoping for some guidance as I’m feeling overwhelmed and confused. I was diagnosed with Dupuytren’s just three days ago and have spent every minute reading everything I can find. I have gone through much of the forums, which have been very helpful, but also have me unsure as to how I should proceed at this moment.

I had noticed a cord on my hand quite awhile ago. I assumed it was nothing. Two weeks ago I felt a very small bump in my palm and made an appointment with a hand surgeon. (I assumed it was a cyst, as they run in my family.) The surgeon looked at my hand for several seconds, told me I have DC, and that there was nothing I could do until my finger started to bend and then he would operate.

Over the past several days, my lump has grown larger and is sensitive. I am eager to do something as soon as possible if there is a way to slow down the progression. After reading on these forums about RT and about Dr. Seegenschmiedt in Germany, I’m fairly certain that I would like to take such a course of action.

I am confused about whether it is too early to consider travelling to Germany (I am in Connecticut, US) to have RT. If I am in the early stages, do I wait to see whether the DC continues to progress? Can it stay dormant for years? I also don’t understand about the need for DC to be in an “active” phase to have RT. How long does that phase last? It seems I’m active now. I just don’t know what I’m supposed to do next…

Everyone here seems to be so generous with information--what an incredible resource. Truly appreciate any information from those of you with experience!!

Thanks so much!
Amy

Hi Amy,

flojo already said the important things (and said them better than I could do), so just one comment on travelling to Germany: some German clinics have long experience in treating Dupuytren's with radiotherapy, they are very good in it, and they are cheaper than the typical US clinic. But the radiotherapy technique itself is not very difficult and there is a variety of US based clinics offering RT of Dupuytren's http://www.dupuytren-online.info/radiotherapy_clinics.html . Ihat I want to say is if at some point of time you need radiotherapy and you health insurance won't pay for it germany is a good option. Also if you want to visit Germany anyway then it might be a good option but you don't have to, there are many clinics in the USA, too.

You digged through lots of forums and I hesitate to recommend reading even more but maybe it would be interesting to also read a few pages of this web site, e.g. (for a start ...)
http://www.dupuytren-online.info/dupuytrens_contracture.html (disease overview)
http://www.dupuytren-online.info/dupuytr..._therapies.html (therapy options and which is best when)
http://www.dupuytren-online.info/radiation_therapy.html (overview of radiotherapy)
http://www.dupuytren-online.info/radioth...de_effects.html (side effects of radiotherapy. RT, as any treatment has side effects and you ought to be aware of them)

And finally, welcome to our forum! This is a great place to find help and connect to people in the same situation as you are.

Wolfgang

Amy,

Flojo was correct that this is an interesting disease. My right hand was active fifteen years ago and then the disease went totally dormant. Now 15 years later is has become active again with a new nodule and the start of a cord. I am in the process of checking on RT at this time to see how much insurance will pay. If the insurance company will not pay then I will just wait and then have surgery when the fingers contract about 25-40 degrees (which might not ever happen).

Don't get too "freaked out" about this. Many (perhaps most) people go through life with this never developing to a stage that causes many problems. There are many more diseases that are considerably more serious than Dupuytren's.

Hi Amy,

You know when I think back on my decision as to when to have RT, I had no doubt my DD was active. Tingly feelings and pain in my hand kept me up at night Mine did start with a nodule and then a cord became noticable. I took photos of my hand on a weekly basis and could see the changes. I knew it was active. As to when to have RT? I did not want to wait until contracture occured. I could feel the beginning of a tightening in my plam and a slight pulling down of my middle finger. My skin began to pucker between the middle and index finger. Since my hand was changing every week, I did not want to miss the opportunity to have RT. I knew from reading here that RT was best at treating nodules. I felt that if RT did not stop the progression, I could always go to plan B, which was NA or xiaflex.

Treating DD is like learning to swim. You just have to jump in. There are no right or wrong decisions. Every hand is different and DD seem to progress at different rates. I understand the feeling of panic. I felt my hand was out of control, had a life of it's own and I was powerless to stop the changes. What is so difficult is that there is no standard "prescription" for teatment. Each of us has had to look at the research, look at our finances, make a judgement as to: is it acitive, how fast is my hand changing, should I wait or should I treat, is now better than later? Once again, there is no wrong or right decision, the right decision for you is your decision.

From reading other peoples threads that have gone to see Dr. S. (I refer to him as "The wizard" easier than saying his name). Dr. S. found many more nodules in their hands or feet than they could feel.

I found Dr. Crirmaldi who treated mine by calling every oncology and RT center until I found one who would treat DD. It took hours, and weeks for me to find him. He had treated DD in the past and followed the German protocol. If you talk to the doctors who do radiation in your area, you might find someone who can treat DD.

Keep us posted as to your thoughts, and don't hesitate to ask questions. This forum knows I have certainly asked my share.

Lori

Amy,
You wrote:

Quote:

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Over the next three weeks, I have appointments with a NA/hand specialist and a Radiologist. Educating myself is my first step. Like they say--knowledge is power.