DUPUYTREN’S
CONTRACTURE
My experience with radiation treatment
I was first diagnosed with Dupuytren’s Contracture in my left hand in March, 2004. My doctor referred me to two different surgeons who both recommended surgery. After a lot of research, I decided surgery wasn’t for me, at least not yet. I spent a lot of time reading postings on the Dupuytren’s Forum and emailed a woman who reported great success with Acupuncture. I decided to try this to see if I could avoid surgery or at least delay the progression. Over the last six years, my Dupuytren’s has progressed very little (still in Stage N) although I’ve heard from others with better success and some with no success. As it was still progressing I decided to go with radiation treatments which seems to have about 84% success rate at completely stopping all further progression, IF, it’s caught at exactly the right stage.
I quickly learned that there is currently no doctor in Canada offering the treatment and the handful around the U.S. would cost me about $16,000 besides airfare, accommodation and meals. Most of the clinical trial and research literature I found in my web searches has been written and posted by the world authority on radiation treatment of Dupuytren’s, Professor Dr. M. Heinrich Seegenschmiedt in Hamburg, Germany. So around April 2010 I emailed the Professor to ask about the possibility of him treating me. We corresponded back and forth and I emailed him photos of my hand. He accepted me as a potential patient for an approximate total cost of about 1,200 Euros (approx. $1,800 dollars!!!) and I proceeded to book my flights and hotel in Hamburg, Germany for June 18, 2010.
My Air Canada flight from Toronto to Frankfurt was uneventful, other than leaving about 30 minutes late. This created a very tight connection in Frankfurt for my flight to Hamburg although I was assured that these flights are hourly through the day and if I missed it, they would undoubtedly get me a seat on a later flight.
My bags were checked through to Hamburg although you have to pass through what they call Passport Control in Frankfurt which is a long, slow line-up then through security again which of course is another long, slow line-up. Regardless of this slow process, with only 45 minutes connection time, I did make my flight.
When you first get off the plane there are monitors showing which of the two baggage pickup areas to go to for your flight. Make sure you check this or you might be waiting in the wrong room at the wrong end of the airport.
After picking up my suitcase I walked out the door into the taxi line-up and was immediately directed to one of the cabs. He loaded my bags and when I showed him the name and address of my hotel, the Courtyard Marriott Airport Hotel, he took my bags back out of the trunk and told me the hotel had a shuttle that I should call. Apparently he did not want to charge me for the short trip if I could get a free ride. The man directing people to taxis took the time to take me back inside the airport up to the courtesy phone at the transportation information desk and I called the hotel. You then go up one level and wait anywhere along the terminal 2 roadside for pickup. The van arrived in 5 minutes (easily identified with the green and orange Marriott colours and logo on the white van.
I told the driver I had an
appointment in 90 minutes and gave him the address, only about 2 or 3 km (1 ½
miles) from the hotel. I had planned to
walk but he wouldn’t hear of it, offering to drive me. Checked in, quick shower, shave and change of
clothes and off we went for the 5 minute drive.
There is a large reception desk as you walk in the front door of the clinic and when I introduced myself they could not find any appointment or record of my name. The girls spoke enough English to easily make myself understood and they directed me to a waiting room and gave me a short form to complete with my personal info. I had to wait over 30 minutes but then Prof. Dr. Seegenschmiedt himself entered the waiting room and led me to another private room for my assessment interview.
Prof. Dr. Seegenschmiedt speaks excellent English and is easy to talk to. He asked for my medical history, medications being used, history of my Dupuytren’s (when it started, first symptoms, what I did, progression details and recent changes). He examined both my hands and feet although I was only there for my left hand, he found early signs of Dupuytren’s in my right hand and Ledderhose in both of my feet. Only my left hand was advanced enough for treatment (stage N) and luckily not too advanced.
He used a permanent black marker to outline all the afflicted areas on my left hand and dotted lines around all the beginning areas on my other hand and both feet. He has a method of tracing my hand out on paper and photocopying this onto acetate then my hand with the markings onto that. This provides an overlay to direct the radiologist so I was allowed to wash off the marks. I had fully expected from knowledge of other people’s experience with radiation treatment that I would have to avoid getting my hand wet to keep the marks on for the week so I had come prepared with a couple of surgical gloves and rubber bands and water proof tape, to protect my hand when I bathed. So this was great news that I didn’t need that, meaning I could swim and wash with no worries.
So after about a 45 minute appointment, we then scheduled my first radiation appointment for Monday at 5pm and I walked back to the hotel. The following days I could just drop by the clinic at my convenience any time during their day for my short treatment.
It’s an easy 30 minute, 1.5 mile walk in a nice neighbourhood with good sidewalks (watch out for the bicycle path along the sidewalks), good crosswalks and pedestrian signals and traffic lights.
The Courtyard Marriott Airport Hotel is in a pretty good location; 1.46 miles to the clinic, 1 mile in the opposite direction to the little shopping area of Fuhlsbuttel (the neighbourhood we’re in) with banks, restaurants and all kinds of little specialty shops, and only three short blocks to the Fuhlsbuttel Norde Tube (subway train) station as well as a little cafe, and corner store and a GREAT Thai massage studio.
The hotel has a nice restaurant with a breakfast buffet (18 Euros), lunch as cheap as 9.90 Euros, and dinner from 20 to 30 Euros. There’s a nice bar between the lobby and the restaurant and bartenders Mustafa and Andreas both speak excellent English and are friendly and helpful. As I was on my own, I ate most of my dinners at the bar. Lunches I ate out or snacked on fruit and yogurt I picked up at the corner store.
The hotel also has a small fitness room, saunas and swimming pool. They advertise an Ayurveda spa on the premises but it’s actually just two treatment rooms and you have to book in advance at the front desk so they can call in a masseur. I strongly recommend checking out the Ploypailin Wellness and Massage which is just one block east of the hotel. Nuk, that owns and runs it, is Thai and she speaks German and English. Very reasonably priced and excellent massages!
Most of the front desk staff in the hotel speak excellent English and were really helpful at explaining what to do at the Tube, city tour information, etc. The Tube really is cheap and easy and I travelled around the city quite a bit this way in the week I was there.
I arrived at the clinic at 5pm on Monday for my first radiation appointment. I gave my name at the reception desk and they directed me to a small waiting room. Prof. Seegenschmiedt came for me in a few minutes and led me down two flights of stairs to the radiation treatment centre. There is a reception area here and the radiation tech was waiting for us. He took us into the radiation room and Prof. Seegenschmiedt and he set up the equipment and arranged the masking for the radiation to be properly directed onto just the affected area of my hand. After they had everything set up they left the room and the equipment turned on and radiated my hand for 30 seconds.
You could hear the equipment
humming loudly but there was no noticeable feeling. They came back into the room to release the
equipment from on top of my hand and I was told to come back each day for the
rest of the week. I could just drop in
at any time during business hours.
For the rest of the week, I dropped by the clinic each day at various times for my treatment. Each time I check in at the main reception desk and they ask you to wait in the waiting room. Early mornings seem to be slowest. You wait there until your name is called over a loudspeaker then you leave the room and walk down the stairs into the radiation reception area. The tech is usually waiting for you or you may have to sit for a couple minutes in a small cubicle until he calls you. Then you go in and the set up is routine now so the whole thing only takes a few minutes.
On the 2nd day Professor Seegenschmiedt gave me an invoice for my treatment so far. This included our initial discussions and diagnosis via email, my initial appointment and the radiation for the week. It came to 750 Euros. (They only accepted cash in June but when I went back in October they also took Visa and Mastercard) I brought the cash with me two days later and was led to an office to make the payment to a woman in charge of that.
At the end of the week they said good bye and I was done. No further instructions. A few weeks after I was back home I received a letter from Prof. Seegenschmiedt detailing my diagnosis, treatment so far and recommended second treatment and follow-ups throughout the following year. These can be done by email or phone he assured me.
Beginning one week after my last treatment, for about 12 weeks I noted any changes in my hand.
Week 1: Using Urea 20 moisturizer several times a day. Hand is slightly pink and there is a slight sunburn sensation when rubbing in moisturizer.
Week 2: Skin is noticeably drier, especially at base of fingers. Very slight signs of peeling beginning along rows of nodules below ring finger. Some slight sunburn sensation when moisturizing.
Week 3: No more peeling but the skin seems to feel like it is thickening, almost a bit leathery, especially at the base of my fingers. My palm is often a little itchy. Moisturizing about 6 times a day.
Week 4: Everything seems back to normal. Skin is very slightly drier than the other hand but colour and texture are the same.
Week 5: Colour is darker; looks tanned.
Week 6: Skin is definitely darker than the other hand, looks tanned and dry even though moisturizing regularly.
Week 7: Hand colour back to normal. Received a letter this week from Prof. Seegenschmiedt, confirming treatment to date and recommended followup and 2nd treatment in September.
Week 8 and thereafter: Hand colour, dryness and texture all normal. I continue to moisturize 2 or 3 times a day.
I emailed Prof. Seegenschmiedt near the end of August to schedule my second week of radiation for October 11 – 15, 2010. I received a reply in a few days with an appointment scheduled to see the Professor at noon on Monday, Oct. 11. I arranged flights this time using Aeroplan airmiles and arrived at the Hamburg airport at 8:40am on Saturday, Oct. 9. The shuttle arrived within 10 minutes of my call and five minutes later at the hotel I was able to check immediately into my room. As requested, I had the same room as last time which is a small suite at 138 Euros/night. I found it much more comfortable to have a little extra room with staying there for a whole week.
My wife came along on this trip so we explored the city more. The tube (train) station is just three blocks from the hotel. You buy your ticket from a machine in the station (which can be set to display in English) and just climb on board any train or city bus with this ticket. Nobody looks at it other than spot checks now and then. All the city guides have maps of the train routes and they are posted all over the stations. We normally bought a ticket good for all areas, train and bus, for the whole day for 5.40 Euros each. Each of these adult tickets also covers up to 3 kids with you.
We took the tube downtown and went to a Turkish Hamam. This is a Turkish steam bath and is a great experience including massage and I highly recommend it. We also explored the waterfront area, walked through the Reeperbahn red light district, the beautiful, historic city hall and the Europa Passage shopping mall and hundreds of other little shops and designer stores all over downtown. I recommend stopping in at one of the little bakery/coffee shops which are on virtually every corner of the city. McDonald’s and Starbucks is here too but we found it nice to go with the local flavour whenever possible.
You can catch tour buses at the Central Train Station for a wide variety of city tours which is a great way to get a feel for the city the first time. You can also tour the city by riverboat from downtown as well as the River Elbe. On another day we travelled by train for about ½ an hour to the Bergdorf district which had a nice, touristy shopping area all around the train station. From there, we caught bus #227 for about a 40 minute ride to KZ-Gedenkstatte Neuengamme concentration camp. This was a very interesting and moving experience. Allow at least 3 hours to walk through the area and view some of the exhibitions. We easily found our way back on the same bus and trains, just reversing our route there.
On another day we caught the tube to Hagenbeck Tierpark (zoo and aquarium). This was a great zoo and we enjoyed the day tremendously. Allow yourself at least 3 or 4 hours here or possibly the whole day if you’re here with kids.
I met with Prof. Seegenschmiedt at noon on Monday. He found no advancement of the Dupuytren’s in my untreated right hand or of the ledderhose in my feet. Examination of my treated left hand showed that one of the main nodules, at the base of my ring finger, had completely disappeared! I went in for my radiation treatment after our meeting which was very quick as they used the same masks and setup as previous. Tuesday through Thursday I dropped into the clinic at any time convenient to me and the procedure was the same as my first time here. On Thursday they gave me the bill for the week which came to only 433.75 Euros which I paid the next day by Visa (they take both Visa and Mastercard now). They scheduled me an appointment to meet with Professor Seegenschmiedt the next day on Friday at 10:30 am to discuss things following my final radiation treatment. At that meeting, he gave me a letter detailing my diagnosis, treatment completed and costs as well as copies of my hand photographs and diagrams along with instructions for examining the progress on my own. I will be emailing him (or attending the clinic if I happen to be in Hamburg) with my personal examination notes after three months, then annually for five years. He assured me that I did not have to return to Hamburg and he was very comfortable with all follow-ups being done through email.
I seem to be having some more immediate radiation side effects this time. I’ve had more fatigue than usual this week and reduced interest in food. I’m having a little trouble with mouth sores but bought some “Odol Plus” antibacterial mouthwash at a local drug store and that seems to be helping me quite a lot.
Some useful web sites and email addresses:
Professor Seegenschmiedt, Strahlenzentrum Hamburg
Courtyard Marriott Hamburg Airport Hotel (restaurant, bar, spa, pool, airport shuttle)
www.marriott.com/hotels/travel/hamcy-courtyard-hamburg-airport/
Germany Tourism (Hamburg)
http://www.germany-tourism.de/ENG/destination_germany/master_tlstadt-id1097.htm?cc_lang=US
Hamburg in Your Pocket City Guide
http://www.inyourpocket.com/germany/hamburg
Weather Underground (Hamburg)
http://www.wunderground.com/global/stations/10147.html
Hagenbeck Tierpark (zoo and aquarium)
KZ-Gedenkstatte Neuengamme concentration
camp
http://www.kz-gedenkstaette-neuengamme.de/index.php?id=20
Other nearby hotels:
Mercure Hamburg Airport Hotel (nearest the clinic. Restaurant, bar, airport shuttle)
Hotel Schumann (half way between the Marriott and the clinic. Restaurant for breakfast only)
http://www.hotel-schuemann.de/
meinHotel (around the corner from the Marriott. Restaurant for breakfast only)
KOCKS Hotel (next door to the Marriott. No restaurant)
http://www.kocks-hotel.de/en.html
Beginning on
October 22, 1 week after the end of my 2nd week of treatments, I
noted changes to my hand:
Week 1: Moisturizing several times a day with a Urea
20 moisturizer. Base of fingers is a
darker colour, a bit grey looking the the texture is
different, seems drier, almost thicker and not as supple. Skin tingles a little bit like a slight
sunburn sensation when rubbing in moisturizer.
Week 2: Palm seems a bit red and skin at base of
fingers is more leathery look and feel.
Week 3: Base of ring finger and little finger are red
and dry, kind of raw looking and close to cracking. Moisturizing frequently. Hand and fingers ache off and on and palm
stings like a sunburn.
Week 4: The redness and cracking have improved a
lot. I never did get any fully open
cracks.
Week 5: Skin is now peeling a little between my
fingers, at the base of my ring and middle fingers mostly. My hand is noticeably darker on the palm and
the back. My fingers are kind of grey in
colour and the back of my hand almost looks a bit green.
Week 6: My hand is still darker and discoloured but
the peeling has stopped. It was very
minor. I’ve been more diligent about
moisturizing several times a day and I think it may not have peeled at all if I
had always been this diligent.
Week 7: Hand colour is returning to normal. No peeling.
My palm has been a little puffy for the past few years and that seems to
be reducing. The nodules are less
pronounced and my hand seems to be able to open wider and lay flatter.
Week 8: Hand colouring very close to normal with only
a very slight green tint on the back, palm a touch red and base of fingers a
little grey.
Week 9, December
17, 2010: Hand colour is very close to
normal. My typing, which has
deteriorated badly over the past few years from the Dupuytren’s, is improving
again with my speed increased and typos greatly reduced. Measurements show that my hand opens much
wider and lays flatter than when I first saw Prof. Seegenschmiedt on June
18.
Roger Mirka