Hello, I am new to the Forum and have a question on RT which I hope somebody can help me with but first a brief history of my DD.

My father had Dupuytrens and my uncle had Dupuytrens and Ledderhose.

I first noticed a lump in my right hand below my ring finger in my early 20's (I am now 43) and knew it was Dupuytrens and had it confirmed at the Doctors. Several years later having worked as a builder (can there be a worse profession for someone with Dupuytrens) I developed Garrods Pads through general knocking and banging of my hands, although I was not sure what they were at the time.

I then noticed a lump in the arch of my left foot in my late 20's. I went to the Doctors and was told it was nothing and it would probably disappear on its own. In 2005 I had an arthroscopy of my left knee and had the lump removed from my foot at the same time. After approx 18 months I went to the Doctors because the lump had reappeared. Having seen a different Doctor he wondered if the lump on the foot and the Dupuytrens were linked. I came home, researched on the internet and voila, I found that Dupuytrens, Garrods Pads and Ledderhose were all linked.

About six years ago I fell off my bike and landed heavily on my right hand. The Dupuytrens felt like it had torn inside the palm and that is when it started to progress more rapidly, giving me another nodule and causing a cord to run up my little finger and across the top of my palm. Over time this started to contract but was told by a surgeon to leave it until the contracture became quite pronounced.

In 2009 I had a second operation to remove two lumps from my left foot which had re-grown.

Now I have Ledderhose in both feet and am sitting here having just had surgery on my right hand for contracture and cord removal and two lumps removed from my right foot. I have also got five to six nodules developing quickly in my left hand.

I have been reading about Dupuytrens for three solid days and have come to the conclusion RT is the only real viable option for me to continue with a decent standard of life and keep my job as a Firefighter.

So having read most of the Forum here are my views. I know I can probably get RT done on the NHS. I don't know how long it will take to get done and how much experience they will have dealing with it. Will I be able to get it done at my hospital, now NICE have given the okay to use it, or will I have to use one of the others, ie. Poole or Exeter, if I can get in. Am I better going with Dr Shaffer privately and how much would it cost or am I better going to Germany to see someone, probably Dr Seegerschmied, because they have been doing it for such a long time. I have also looked into the risks of radiation and although they vary slightly, it still seems a low risk to give me a better standard of life without the worry of progression or further surgery.

Although I have read several threads on the Forum on RT I would appreciate anyone's help in making this decision.

Many thanks.

Hello Daylor,
Welcome to this most informative forum. First, I had RT done in Germany with Prof. S on both hands. Seems you are getting new nodules, that is the time to zap. I can talk about hands. My last RT was early December last year and the progression of DD has so far stopped in both hands. My right hand already started to contract a bit and the Prof. gave me a 70% chance that RT will work. My left hand had 5 nodules popping up one after another, RT has stopped them cold. Those were in the beginning stages.

Nodules need to be active. As you know things can change very quickly, at least it did in my hand, so it needs to be done soon.

Feet should have RT 3 month after Operation, from what I read, so nodules would not re-grow.

You might consider going to Germany. Prof. S has so much experience with this nasty disease. It's not the radiation itself that is problematic, it knowing "what" to radiate. Some people here in the States had RT done and then went to Prof. S to have it re-done, the margins of radiation were off.

Hope that helps a bit.

Good Luck!

Christl

Daylor:

---

Thanks for getting back to me with your replies so soon, it certainly helps knowing there are more people out there with the condition than you originally thought and there is somebody to talk to. I have certainly found my Doctors have not really had a great deal of experience and knowledge on the condition and I have had to find out most of the information myself. The surgeons I have had dealings with like to leave the condition until contracture occurs and becomes a problem for you before they are willing to do anything about it. This seems to be a common theme after reading several threads on the Forum. Like most other people on here have said it certainly seems to be that we need to educate them of other options which are open to us.

Edited 04/23/12 19:37

I agree with the others, get RT as quickly as you can arrange it. Go for it!

Just so you know, when I had RT almost 3 years ago, this website was the only place I could find information about alternatives to surgery. We've been working together via this Forum to educate doctors and to find more doctors who will do RT, NA, and now Xiaflex. Those radiologists who are willing to help us are the best I think. They are willing to step out somewhat against traditional medicine and do RT.

I had RT done on my right hand at Scripps in San Diego. It was successful. My whole palm and all joints connecting my fingers to my palm (MCP) were included in the field. The nodules stopped forming and although my palm looks like bubble wrap, no new nodules have formed in the radiated area. Now, almost 3 years later, a nodule formed in the middle finger, but it is like a free moving BB shot and causing no problem. Just yesterday, I felt a slight soreness in my thumb almost at the tip. It's suspect and I think a nodule is forming. That's new disease. I repeat, RT worked for me. Almost 3 years later nodules forming outside the radiated area tells me that it is this stupid disease trying it's best to get the best of me.

If NICE will do RT and it will work for you, it will help others with what process to use. If you can and you decide to go to Germany, Dr. S in renown. Radiologists who do RT and other hand specialists who do NA and Xiaflex are interested in working with Dupuytren's and seem to have a passion for it. Actually, it's a fascinating disease.

Just curious, is your surgeon a hand surgeon, or what? My surgeon does surgery on the hand and nothing above the wrist. He also does Xiaflex now. When I had my surgery 10 years ago, he considered trying to get me signed up for the trials at Stanford. In my case, I'm glad I didn't do that. Your situation does sound worse than most. The results from Ledderhose surgery do not seem promising. It seems that that surgery often causes more problems and many have decided it is not worth it.

Edited 04/23/12 22:15