Radiation Therapy for Dupuytren's Disease in Hamburg Germany


Summary

In 2016, I developed Dupuytren’s Disease in both of my hands. It progressed in two months to stage N in my right hand. I decided to get radiation therapy in the hope of preventing further progression of the disease. My Medicare insurance plan did not cover this treatment at the clinic/hospital nearest to where I live, and the out-of-pocket expense would have been out of the question for my resources.

With due diligence, I learned of the research and treatment program spearheaded by Prof. Dr. Seegenschmiedt in Hamburg, Germany, where they have treated approximately 300 DD patients/year since the 1980s. The cost, even with travel and lodging expenses was very reasonable. So I contacted the clinic in March, 2016, and made arrangements to go. It is now October, 2016, and I have made two trips to Germany, receiving there two series of treatments to my right hand. The total cost, including the treatments, airfare, lodging, and meals was a little over $5,000.


Information: Clinic, Treatments, Nearby Lodging and Meals

I was treated by Prof. Dr. Seegenschmiedt at The RadiationOncology Clinic, Strahlenzentrum Hamburg, located at Langenhorner Chaussee 369, 22419-Hamburg, Germany. The phone number is +49 40-244 245 81 20. To contact the clinic use this general information email address. Or you can contact Prof. Seegenschmiedt directly at his personal email address.

If you decide you want to consider treatment, he will send you a questionnaire and ask you to send him some photos of your hand. From these, he will determine if you are a likely candidate for treatment. I know of one person who was deemed "likely," but when she got there, he told her it was too early. Apparently there is a window of opportunity for radiation therapy... the disease must be in an active phase, but not have gone too far. I have small nodules and cords in my left hand, but he would only treat my right hand, saying that the disease had not progressed sufficiently to warrant treatment for the left hand. Thus you should be mentally prepared for the slight chance you would get there and be refused treatment.

The radiation oncology clinic (not a hospital) is located quite near the Hamburg airport, accessible directly from the airport by bus (#292 going in the direction of Ochsenzoll, and it's about half a dozen stops to Oehleckerring, the stop nearest the clinic). There are 5 or 6 motels/hotels along the way, with prices ranging from 50 to 90 Euros/night for one person. Being on a strict budget, I decided to stay in a Pension, located just 2 blocks walking distance from the clinic, the PensionLangenhorn on Oehleckerring 6. The cost at the pension for 1 person is 29 Euro/night. It has no amenities, no breakfast, but there is a refrigerator in the room, and it feels safe enough. I liked that it's easy walking distance from the clinic.

There is an International Restaurant across the street from the clinic, where I enjoyed decent meals for a reasonable price. Also, there is a bakery a few doors toward the airport from the clinic, where I bought a breakfast sandwich and coffee most mornings.

The clinic will schedule your appointments starting Monday afternoon, which allows you to travel to Germany Monday morning. You will be finished before noon on Friday. Therefore, you would only need lodging for 4 nights. The treatments, after the initial visit with Prof. Seegenschmiedt, are un-scheduled, meaning you can come to the clinic at any time. I generally went soon after they opened at 8 AM, so that I could have the remainder of the day free to explore the area. The wait-time at the clinic can be a half hour or so, but the actual time for treatment is only a minute or two. Most of the clerks and technicians speak English well enough to help with everything you might need.

The radiation had no obvious affects on me during the days I was there. Thus I had energy to take the S-Bahn from the airport into the city center for visits to museums and general explorations after my morning treatments.

Originally I was told that the clinic accepts credit cards, including Visa. But when I arrived (both times), I was told I needed to pay with Euros. It was no problem. I walked to the Langenhorn shopping center, about 1k toward the airport, and found a bank with a machine where I could use my credit card to get cash.

I hope this is helpful information for you. For some photos and more information, please see my blog post here.

Robin Atkins
October, 2016

Dupuytrens contracture disease, radiation therapy, Hamburg, Germany

Dupuytrens contracture disease, radiation therapy, Hamburg, Germany



4 comments:

  1. Good to hear radiotherapy in Hamburg went well for you, too. I had my right hand treated by Professor Seegenschmiedt in the same place a year ago and then again in January and paid with my Visa card both times. May it last a long time for both of us. I have the impression I am developing a knuckle pad outside of the treated area but in terms of contracture I am fine with a night splint glove for the finger that had previously bent before NA.

    Stef

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    Replies
    1. Hi Stef, I've not had NA and don't wear a splint, but have been wondering if I should. There's nobody near where I live to consult about this. Yes, may it last a long time for both of us! Thanks for commenting :)

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    2. Hi robin. Thanks so much for this really useful blog. I was told by a hand surgeon that he would wait until my hands got worse and operate.. I was so distraught and did an extensive research excercises online. Found out about radiotherapy as an option and about Prof S and then found your blog and it's given me so much more confidence to go along this route. There is nothing in the UK. So I am hoping he will be able to help me. I have a nodule on both hands so want to see him as soon as possible. I am a dentist and a jeweller so manual dexterity is important. I see you are an avid beader. Beautiful work. Thank you so much for creating the blog
      Menna

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