Hi Jennifer

I mostly discussed it with my wife and parents after reading as much as I could about all the Dupuytren's options. Possibly like yourself, I was just so relieved when I discovered there were alternatives to the NHS option of waiting for the hand to grow progressively worse then have surgery which could make things even worse again.

I decided that for me the advantages outweigh the risks. It helped when I spoke to the Prof also. He said radiotherapy had been used for decades in the countries behind the iron curtain to treat many things, including rheumatism and other muscular conditions. You certainly feel they are taking plenty of precautions in Essen - and it seems a routing procedure there.

Cheers

Nigel

You asked if we knew any physicians who had had radiation. I'm a 58 year old physician and I have had radiation to both hands and both feet.

I was back for a follow-up visit last month and my radiation oncologist thinks he's developing too and is considering radiation is the diagnosis is confirmed

Jennifer,

The disease can often take years to progress but some have had an aggressive progression where cords and contracture can develop within several months to a year. In my case, I have two brothers who have contracture of two fingers on each hand within two years. My first and only nodule developed about 7 months ago and is only just beginning to develop a cord and is only a few centimeters away from the core nodule. development is different for each person.

You should be able to read many different accounts from those have posted here. I too am looking into Radiotherapy and am hoping to find a doctor close to where I live who would be willing to do it. I am not planning on waiting long and wish I could have had it done yesterday.

Chris

I have just started radiotherapy treatment in Essen for the first set of 5 exposures. It became obvious after seeing the doctor that it is necessary to have someone with professional experience to properly palpate the hand and determine the extent to which the disease has progressed. In my case it was 500% worse than I could tell just by looking for obvious cords or bumps in the skin.

And as the radiotherapy is designed to stop the cells from progressing to the point where a cord is created or a contracture has resulted, it is pointless to go for radiotherapy in the later stages of the disease after the cells have "mutated" and the damage has been done. I would suggest that anyone who knows they have the disease seek radiotherapy at the earliest opportunity. It is really the only procedure currently available for halting the progression of the disease and not simply treating the symptoms either with surgerical procedures or enzyme injections (in the future).

I also learned that although many trials have been done with a 2 month interval between the 5 treatments, the doctor says it is best to have at least a 3 month interval. Important to know for planning your stays in Germany.

The treatment procedure as well as the diagnosis at the clinic in Essen shows the benefit of their having dealt with hundreds of patients over a period of many years. Had I gone to a radiotherapist in the USA they would not have known what area to treat with the radiation. Only someone who has hands on experience with Dupuytren's patients is going to be able to do this with accuracy. Otherwise diseased tissue could be missed and the radiotherapy treatment could fail.

Bruce

Hi Bruce

I agree. When Prof Seegenschmidt examined my palms it was immediately obvious he knew exactly what he was looking for. He diagnosed the suspected areas straight away. There's no substitue for experience in these things.

Nigel