What this disease needs is more exposure to the public ---like publicity in Parade Magazine or some mammoth million circulation magazine or TV network. I like thousands thought I had something else 4 years ago-nobody ever heard of Dupytrens. Even my local surgeon a few years ago wouldnt look into--now he gives Xiaflex injections. If it isnt killing people they wont do the research. What about genetic research--the medical community says its genetic - but where is the science?

Sorry-- but I'm Pis@#$%.

eastwind,

What kind of a surgeon did your surgery?

Hi eastwood, yes the test was EMG. You can test yourself by tapping on the Median Nerve on the inside of the wrist and a positive result is a shooting pain from the wrist to fingers or thumb. Also by bending the hand 60 degrees for an extended period and again severe pain. Type in carpal tunnel syndrome and do a web search. I might suggest after surgery make sure the hand which had surgery is positioned above the heart /resting on the shoulder to help reduce swelling etc. keep the fingers moving to pump the blood back . Regards.

Edited 05/29/12 08:53

For the Brits that are looking for Radiation treatment in UK here is a source from the British Dupuytrens Society

https://dupuytrens-society.org.uk/treatm...-organisations/

RichSF

Hi All,

Thought I’d write out a bit more on my Germany radiation experience while I’m waiting here in the Portland airport for my connecting flight to Medford. The weather was perfect when we arrived in Hamburg, so after all those hours of sitting on the plane, we were happy to find that our Hotel was within walking distance. When we came out of the airport, we turned left and walked over a bridge which crosses a major highway. We took a left turn at the first major intersection we came to and up ahead we saw the sign to the Mein Hotel. That’s where we had booked a room online beforehand – very small rooms, but very clean. There is a nicer hotel on the corner called KOCKS – it’s a good place to stop in to buy your Hamburg Card for the week. Since we’re vegan, we didn’t eat the hotel breakfast, but went to the grocery store just up the road a ways to pick up some wonderful German bread, fruit and nuts. The prices were amazingly low -huge loaves of whole grain bread for only one Euro!

My first appointment was at 11:00am on Monday morning. Apparently I wasn’t expected – took a bit for the girls to figure it out. I waited about an hour to see Prof. S. Meanwhile we had a nice visit with other patients in the waiting room. No surprises with the hand examination – I had pretty much figured it right as far as the number of cords and nodules I have. However, I was somewhat surprised to find out I had a nodule in each foot – nothing that I can feel when I walk, thankfully. Prof. S. is a genuine, caring, and compassionate person. I feel privileged to be his patient. He told me to come back at 6:00 in the evening for my first treatment. There were always about six people in the waiting room ahead of me no matter what time of day I arrived. My treatment field included my entire palm and up to the Pip joint, since my nodules are at the base of nearly every finger. I thought I felt a slight tingle with my first treatment, but thereafter nothing. I walked to my treatments and rode the bus back to the Hotel.

We found the best vegan food by taking the Sternschanze exit on the U3 line. We could get an excellent meal for just three or four Euro. Bought the English Marco Polo book at the airport bookstore and used that to find our way around. Hamburg is not very English friendly, but if you can snag a young person, they will usually know enough English to help you out. We visited Neuengamme Concentration Camp, Miniature Wonderland, Town Hall, St. Michael’s Church, and walked many, many miles just enjoying the sights. I’m looking forward to going back.

My current disease status is unchanged. Since my brain is very weary, I’m going to bring this to a close; it’s nearly 1:00am – German time.

Sharon