50 yo musician with 6 month history of nodule and cord which have increased in size recently. No contractures yet. I want to get this treated with radiation ASAP.
Has anyone gone to Topeka, Kansas who can share their experience? What was cost(assume insurance in USA won't pay for this). Where did they stay for the 2 weeks?

Has anyone gone to Scripps in San Diego for RT - cost? experience?

Has anyone gone to Univ of San Francisco for this? What was cost? experience?

Has anyone gone to New York City for Dr. R at Cornell? What was the cost? How was it?

Has anyone gone to Essen Germany? What was the cost? How was the experience? Did the Professor speak English? I do not speak German. Would I get along OK in view of this? Where did you stay?

All help appreciated. I would like to get started within a week with treatment.

Hi Australia Calling,
I have been treated in Essen Germany by Prof Seegenschmiedt .He speaks excellent english and so does his secretary.I organized my appointments all by phone. I stayed in a hotel 5 minutes walking from the Alfred Krupp Hospital in Essen.( Hospital gave me the hotel name and they gave me a good deal ) On arrival I caught the ICE train at Frankfurt Airport direct to Essen. The hospital is 4 stops on the underground from the main Essen Station. Most people can help you with English in Germany. My experience was excellent. I also made my appointments the first thing in the morning so the rest of the time we travelled. I made arrangements to see the Prof.to examine me at the end of one week and had treatment the following week. We opted for 5 daily treatments of 3 Gy and returning 3 months later for the same treatment. There is another protocal of 7 treatments over 14 days of 3 Gy. Cost is dependant on the target areas . 1or 2 hands feet etc. I had the lot.A ball park figure would be about 500 to 600 euros of a target area.
Finally send an email to Isslieb she may help about the Insurance payment in the US . Regards

HI Fibroman,

I am a 48 year old musician...not exactly a happy day to get a diagnosis with Dupuytren's for anyone, especially a musician! I don't know where you live, but you might look into Boise as well. I saw Dr. David Kline in June, and he referred me to Dr. Tonya Kuhn for radiation. She is apparently experienced in treating Dupuytren's. Dr. Kline has his own clinic in Boise (see his website) and his assistant is Jill. She's very helpful and was really great about answering questions. Dr. Kuhn's assistant is Marcy (208-381-2751). When I saw Dr. Kline, I received some steroid injections (I have one nodule and cord); the nodule has almost dissapeared (although the cord is visible) and thankfully the wierd burning sensation has stopped. I cannot speak highly enough of Dr. Kline (you can go on YouTube and watch him performing NA and he is exactly as he is on the video...very personable.) I felt very comfortable with him and trust his recommendations completely. Dr. Kline has Dupuytren's himself, so he knows what this is like.

Although I have not yet met Dr. Kuhn (my radiation is delayed until September...due to my schedule, not theirs) but Marcy is also very nice and helpful. Both Dr. Kline and Marcy told me my insurance will cover this (I have Blue Cross Premera), although Dr. Kline said I may have a $1-2,000 co-pay. Marcy told me someone from St. Luke's (I think Mountain States is part of the St. Luke's network) works all this out with the insurance companies and makes sure they pay for this. I paid out of pocket for my office visit and steroid injections with Dr. Kline; this came to around $250.

I liked Boise; both Dr. Kline's office and Mountain States Tumour Institute (where I will receive the radiation treatment) are right in town, within walking distance of many hotels. Both the Marriot and the Safari Inn (where I stayed ) offered medical discounts. It's a very pleasant city; there's a large greenbelt that runs along the river, so although it doesn't offer a lot of cultural attractions, it's great if you are an outdoors person (I'm a birder so you know what I will be doing after my treatment each day). If I can answer any other questions, please let me know!

I didn't have any luck hearing back from the folks in La Jolla, but there are some other people on this forum who are being treated in Topeka.

Megan

Just got the information today. For the first half of my treatment the cost was $10,758. Blue Cross paid $4417.49 and the hospital wrote off $5,732.94 with $607.57 being my responsibility. I would assume that the second half might be a little less because they would already have the molds made for my hands, but who knows. I would suggest that you contact radiation at St. Francis, explain your particular situation and have them price it out for you. It can't hurt to ask up front. I can forward you my information if you'd like. And for whatever it is worth, I begin the second half of my treatment in early August, but I believe, and this is my perception only, I have no quantifiable meausurements, that these nodules are smaller. I am trying to be objective here and not simply what I wish, but I was commenting to my wife day before yesterday that I'm convinced that this is working at this point. If you do come to Topeka let me know and we'll do dinner or something. I'll be glad to help with reservations, etc.

Dale