Following inquiries from various countries we are now (again) listing several clinics in Germany which have confirmed that they a treating also patients from abroad. They are listed at the bottom of http://www.dupuytren-online.info/radiotherapy_clinics.html.
It is important to determine the exact scheduling of the treatments if you are traveling to Germany. In Essen, for example they were providing the XRT every other day and if they first examined your hands/feet on Monday the first treatment might be on Wednesday and 5 treatments would take 2 weeks and not 1 week as one might assume.
Best to email and get an exact time line of the days you will need to be at the clinic before making travel plans.
I received my first round of treatments on both hands in Essen in 2007 for a total cost of 400 Euros. My second round of treatments were in the USA as there was a problem with the machine at the clinic in Essen. The USA hospital charged over $8,000 of which I had to pay out of pocket of $2300 plus travel.
No doubt in my mind that Germany is the way to go. Dr Siegenschmiedt also has decades more experience than anyone in the USA and his diagnosis as to the extent of the area that should be treated is likely to be much more accurate which is also very important.
Bruce, just wanted to mention that for the time being Prof. Seegenschmiedt is on a sabbatical at University of Muenster and not treating patients. Of course, you still can get treatment at Essen but not from Heinrich Seegenschmiedt.
I am starting radiotherapy in Essen on 26 Oct '09. I had a choice of treatments which is 5 x 3 Gy from Monday to Friday and again 10-12 weeks later, or 7 x 3 Gy Monday to Tuesday next week and no further treatment. The first option gives a total dose of 30 Gy and the second a total of 21 Gy.
Apparently they are equally efficient but the second "with a little bit more possible acute reactions". I am going for the second option and it will be both hands. As I have DC in all fingers and both thumbs it will probably be most of each hand.
I don't know if the treatment will stop the pain or if it will allow me bend my fingers properly, my UK doctor thinks it won't help with either and that I shall need hand therapy.
Hi all I have contacted the clinic in Bayreuth about E-beam radiation therapy. I had a reply which gave me details of the dosages and a price estimate but also said the following:
"RT is only indicated for progressive nodules or cords, noticed during a follow up period of 3-6 months"
How do I get the records of my DD being progressive? (If it is) Do you ask your GP to measure the node and then return in 3 months?
I took a photo which is attached. I am just guessing but think it has progressed a bit since I first noticed it in February but I understand the need to prove this is the case.
Has anybody got any suggestions how to approach this?
nodules can stay stable for many years and if they do it doesn't make much sense to radiate them. RT is usually only applied to growing nodules. Obviously, when you come to Germany you can't stay there 3-6 months to decide whther your nodule is growing, so it's up to you to observe your nodule and find out whether it is growing. Questions that you can ask yourself could be:
- when did I first notice the nodule? - what was its size when I first noticed it? - how much has it grown since then? - did it grow at all over the last six months? How much?
If you conisder these questions and make estimates on sizes (e.g. diameter) at various times you can communicate this to Dr. Keilholz and ask him whether he would recommend and will do RT. I don't think you need a doctor to make those estimates, he probably can't do much more than you do. Of course there are means to measure more exactly but e.g. a MRI would be far too expensive.
I could tell that my Dups was active by the feeling in my hand (itchy, tingly in the palm tissue like something was moving around down in the tissue). My radiologist asked if it were active and how I knew. RT is effective on active Dups. More and more nodules were developing all the time. Tightness developed gradually, too, as nodules grew. Mine developed from noticing the first nodule to multiple nodules, maybe 8-10 in my palm and minimal contracture of the pinky and thumb. Looking back, I know now that my first symptom was stiffness in my thumb that I self-diagnosed as, "I'm getting arthritis in my thumb." It wasn't. It was Dups. I now have that same feeling in my left thumb, but I know to watch for nodules, tightness and beginning of cords. It doesn't tell you much but, from my experience, I could just tell.
Maybe others can describe their symptoms that might be different.
Hi Flojo Australia Calling, I've returned to OZ and the symptoms of the itcheness you describe( I called it a funny feeling under the skin) are exactly ,what I have experienced many times prior to my many surgeries. It is now 2 years since I had radiotherapy in Essen. No more funny feeling!!It is unfortunate that many of surgeons dont suffer from Morbus Dupuytren and have a first hand knowledge of what takes place. I believe Eaton in US knows only to well. Radiotherapy is best in the early stages. Regards
The itchiness of the active Dupuytren's also kept the unknowns of Dups constantly on my mind. Effective RT has removed Dupuytren's from the forefront of my mind. It helped my hand, reduced the nodules and got rid of the symptoms of active Dupuytren's. I really believe it has stopped the progression which was my goal. It's nice to no longer have active Dups looming in my mind, too.
I agree with "Guest" who said, "Please contribute to the Dupuytren Foundation and help find a cure. Don't take the chance that your kids will also have to deal with it! http://www.dupuytrenfoundation.org/-http://www.dupuytrenfoundation.org/" Every little bit that we can give will help the research to move forward to find a cure.
In the meantime, this website is critical to all who have this disease. I still check this website frequently and am so glad to see others finding the information they can't find anywhere else. This site is a "hand saver".
Thanks Wolfgang, I will monitor the node and measure it myself - I am thinking that maybe doing a hand print would be a good way to do this.
Thanks to other sufferers for your help too. I don't have the itchiness that you describe but do have stiffness in my thumb and certain fingers which may or may not be arthritis.
If I notice the node is growing over the next months I definitely want to go to the German clinic.
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