Just thought I would update you all on the response I have received from the hand surgeon re RT. He says:
"there is no hard scientific evidence that the treatments you quote prevent the onset of Dupuytren's. Everything have been tried in Dupuytren's and there are many anecdotal reports of benefit, but scientific studies have really not shown any treatment that will prevent this problem. It is obviously sensible to keep the hand as mobile as possible. There is no inevitability regards the progression of this problem. It can take many years for bands to progress. I do not wish to dampen your enthusiasm for trying any particular treatment. I am aware of all the various claims, but I cannot personally support these ideas". So where now!!!

Vanessa,

Thanks for updating us. As I said in reply to your previous post it is unlikely that a UK hand surgeon is going to be positive about RT, at least he wrote back to you fairly quickly. The information he provided on the lack of scientific evidence for RT is not true.

I guess the next question that you need to decide is what to do next? In my personal opinion (and I am not a medical professional) you need to monitor whether your DD is progressing, if its stable then you probably don't need to do anything but if its progressing rapidly then you could consider RT or other treatment options (NA).

If you do decide to go for RT we can try and help you to find a clinic in West Yorkshire to provide the treatment; I am UK based, and was treated successfully with RT 10 years ago in Germany and would like to see wider availability of the treatment in the UK, hence we have been working with NICE to get the treatment formally approved.

In terms of checking for progression there are several things you can do:
1. Take a photo of your hand once a month, for comparative purposes
2. Check how far back you can bend your fingers, DD is generally classified on this basis – something called staging, this website contains a description http://www.dupuytren-online.info/dupuytr..._therapies.html - generally RT is best at stage N or N/1, RT is less effective from stage 1 and above
3. If you hand is itchy, aches a bit, has a creeping feeling, symptoms often described by patients on this forum, your DD is probably active and progressing
4. Feel your hands carefully for chords, which generally form through the palm in-line with the fingers

Out of interest, roughly how old are you (the aggressiveness of progression is generally worse the younger you are) and do you do any manual work or leisure activity which impacts your hands?

Clearly RT is not right for everyone and you need to make your own decision.

Philip

I agree with Phillip to a certain point. My husband is from the U.K. and all of his family still live over there. So the point i want to make U.K. and their medical is horrible. I wouldn't take my pet to any of their doctors. The medical profession is so far behind the times compared to the states. My sister-in-law did some checking for me months ago about treatment over there for D.D. She is a nurse and can find things out the a regular person could not. The word is they offer nothing until fingers contract and then surgery. The treatment over there is physical therapy. Now i ask you what can that do for you?

I would say that MOST doctors in the US, including hand surgeons, are behind. They simply are not educated about anything other than "surgery after you hand is contracted severely." An orthepedic surgeon, my dermatologist, my GP all diagnosed it in a flash as soon as I showed them my hand. The above treatment is all they knew at the time. Now, my GP and dermatologist are very enthusiastic about having something else to tell their Dupuytren's patients. I had NA then RT. Both were effective for me. No progression in the area radiated over a year ago. My other recent posts tell about RT again, but on the area outside the previously radiated part of my hand.

A year and a half ago, even on this website, there were very few docs offering to do either NA or RT. We're the ones, with the availability of posting on this website that is doing a lot to get the word out and educate the medical community.

Thanks to this website, we all have much more information. Keep researching and doing what you can to find out what is best for you. Get a second opinion from some of the docs listed in the menu on the left under RT or NA. Do watch if and how your disease progresses so you will know what it it doing.

Vanessa,

From your current description of your symptoms I don't think there is any hurry for RT treatment. It doesn't sound as though you have any contractures/chords at the moment (I guess your GP/surgeon) might have told you? Although everyone is different, your age suggests progression may not be too fast, if you had said you were 30 years old then more monitoring might have been required. My suggestion is to monitor the situation and get back to us on the forum (or send me a message direct) if more nodules appear or you can feel a chord forming/you can't bend your fingers back. The itching you are feeling could well be an indication of active Dupuytren's contracture, but I guess we all get paranoid post our initial diagnosis!

I used to use a keyboard all day and found it seemed to help with my DD as it improved mobility of the hands. Gentle rubbing of the hand occasionally should not cause any harm although neither of the treatments you have mentioned have been proven to be clinically effective. If you do any activity which causes impact to the hands (sport, cycling, gardening etc.) I suggest you find yourself a good pair of gel cycling mitts to reduce the impact on your palm.

At the moment there are only 2 or 3 clinics offering RT treatment in the UK (Wimbledon, Exeter & possibly Poole) i.e. nowhere near West Yorkshire and given each treatment requires about 2 to 3 minutes of treatment for 5 days in a row it would be better if we could help you find a local clinic. This should be easier once the NICE approval process is ratified for this treatment, which should be before the end of this year. In terms of finding a local clinic for you, once the NICE approval goes through we will try to make use of our contacts to try and find a more clinics around the UK who are prepared to provide the RT treatment.

If you have any other questions, or need further advice, please get back in contact?

Philip