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.
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.
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
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.
ReplyDeleteStef
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 :)
DeleteHi 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
DeleteMenna