First Consultation with Prof Seegenschmiedt via emailI emailed an enquiry to Prof Seegenschmiedt at prof.seegenschmiedt @ googlemail.com (remove spaces if emailing)
His email address was listed on the International Dupuytren Society website. I attached the images below so that Prof Seegenschmiedt could see what my hands looked like.
(Photos of hands in clinic, caption text and email answers from Prof MH Seegenschmiedt.)
Prof Seegenschmiedt referred to nodules changing through various states starting off soft like a "tomato" through to hardened like a "coconut".
The blackened area above is of the "coconut" category and less likely to be helped by radiation therapy.
He said that the hands need to be in a state of change from soft "tomato" to hard "coconut" in order for radiation therapy to be effective.
The image above was taken putting my hand on an HP computer scanner.
We emailed backwards and forwards a few times and he encouraged me to visit Hamburg, having established that I had Dupuytrens and that my hand was at a treatable stage. He quoted 500-600 Euros per site for a series of treatments. Although I had emailed pictures of my worse hand I thought it likely that he would suggest doing the other hand as well which had not started to lose range of movement. The only finger which has difficulty straightening on its own is my left little (pinky) finger or as Prof Seegenschmiedt refers to it as "D5".
The treatment was likely to come to a maximum of 2,400 Euros for two hands, visiting Hamburg for two separate weeks, spaced 3 months apart. This equated to 1,920 GBP at the current exchange rate. Two centres in the South of England are charging the same price as each other at 3,500 GBP, including consultation and treatment.
Officially doctors in the UK have only been allowed to perform this treatment for Dupuytrens since 2010, so the experience base is quite different compared to in Germany where this treatment has been available since the 1980s.
Although the final invoice will vary from case to case, the total cost for "week 1" was 991 Euros for consultations over email, consultations at Strahlenzentrum and actual treatment.
At the current exchange rate this was 792 GBP, under half the price of the UK centres who have had less than 2 years experience since "NICE" (UK National Institute for Health and Clinical Excellence) authorised the treatment in November 2010.
Payment was taken during the week with a VISA card.
Decision Factors in choosing Radiotherapy in HamburgMy father had gone through four hand surgery operations and these seemed to take some time to repair. The most recent operation for one finger with a very experienced surgeon in 2012 cost 3,000 GBP. The result was from 90 degrees back to flat again. Not all of the fingers have had the same success.
If there was any way in which surgery might be avoided that would be preferable. I looked at the youtube presentation of the International Duputrens Miami Symposium 2010 in which Prof Seegenschmiedt presented his findings having worked with early stage Duputrens since 1987.
It seemed that a number of patients have travelled around the world to be treated by him. As the journey from where I live only involves a flight of just over an hour and as the Strahlenzentrum is close to Hamburg airport, it was a going to be a simple trip.
It really helped reading the reports of other people who had done the same trip. Although I didn't read the forum in a lot of detail it was clear there is a steady flow of people going to Hamburg for treatment. Seeing the youtube presentation of one of the other doctors (a hand surgeon) at the Miami 2010 symposium made me decide. "No, if possible I don't want my hands cut up". The objective of radiation therapy is to stop the disease progressing further.
Studies in Germany show about 85% success rate for radiotherapy treatment in meeting this objective.
The Strahlenzentrum is a very popular centre attracting international patients for various radiotherapy needs from Russia, Italy, USA, Canada, Australia, United Kingdom. There is a spirit of friendliness and good will and the patients say "hello" when a new face arrives in the waiting room. The reception staff are very friendly and helpful.
On each visit to the Strahlenzentrum it is important to "check in" at reception otherwise you will never be called.
Waiting times can vary from what seems just a few minutes to quite a long wait. Bringing a good book "in case" softens the wait.
Keeping an ear out your name will be called over the tannoy in the waiting room. This is the cue to walk down the stairs to the treatment areas. Once called there is no hurry because as soon as you have got down the stairs you are either shown a seat to sit on, or in the case of my first visit a cubicile to sit in. The wait from the point of getting down the stairs is about 5 minutes. Some of the other patients are not at all well and they would probably need a fair bit of that 5 minutes to get down to the treatment area.
On the first treatment they take a photo of the hand position under the lead cut out. I'd bought a camera with me and the technician did not mind taking a photo with my camera as well as shown above. Prof S provides a photo of the hands marked up at consultation time but if you want a picture of the hand under the lead cut out bring your own camera.
Once the photos were taken the technician left the room and then pressed the button to start the radiation. The red light on the wall was on for 44 seconds for each hand. You can not feel the radiation either during the treatment or afterwards.
The technicians are getting a continuous flow of dupuytrens patients throughout the year and it comes across that they do a lot of hands, so they are very familiar with the set up and the procedure. Having said that there is a note below about double checking the hand position yourself, which only takes a few seconds.
The appointment times are set up so that if there are other dupuytrens travellers on the same week they'll meet in the waiting room. In the past apparently there have been enough dupuytrens patients for a "group photo". I found it helpful talking face to face with other patients as it gave further insights into the disease.
The Thursday of the treatment week is payment day, so it is worth being prepared. You are taken up the stairs to the credit card machine. They accepted VISA.
Langenhorner Chaussee 369, 22419 Hamburg
Strahlenzentrum Philips E-Beam Radiation TherapyThe consultations and the treatment are all in one Radiation Therapy dedicated building.
Ofcourse Prof S's diagnosis and understanding of Dupuytrens is excellent, but added to that the Strahlenzentrum organisation and equipment is also very good. If I had unrelated radiation needs I'd definitely consider going to Hamburg than the UK, because of cost, expertise and the Strahlenzentrum set up itself.
Strahlenzentrum videoThe first 60 seconds of this 4 minute video gives a good general impression of the Strahlenzentrum reception and building.
Strahlenzentrum Cyberknife video
Cyberknife is another of Prof Seegenschmiedt's specialialities (the Cyberknife robotic equipment is not relevant for the Dupuytren's treatment).
The idea of putting this link in is just to show the building and Prof Seegenschmiedt.
The reception area shown 17 seconds into the video is where I checked in each day.
The consulting room shown 33 seconds into the video is where I had my meetings with Prof Seegenschmiedt.
One of the technicians who treated me on my visits makes an appearance 45 seconds into the video.
Although Prof Seegenschmiedt speaks German in this video, his English is fluent as shown in the Dupuytrens 2010 Symposium conference video.
First Consultation with Prof Seegenschmiedt at the Strahlenzentrum, HamburgAt first he was a bit surprised at my little finger, it was worse than he thought based on our email discussions. My photos that I had sent and especially the HP scanner image, in which I pressed down my fingers, did not show the fingers side on. He said that due to the bottom third being at the hardened and scarred stage, radiotherapy might not help it. It dawned on me that in retrospect I had left it a bit late for my left hand. Prof Seegenschmiedt checked my feet for Ledderhose and found one small nodule on the right foot but too small to require treatment.
He then examined my hands and it became clear why I had come to Hamburg.
His 25 years experience allows him to identify in detail where the nodules and cords are in the hands. He refers to his technique as "palpation" of the hands, identifying early stage small soft cords beneath the surface of the skin.
He marked up my hands:
The circles indicate NODULES, double lines indicate CORDS, the outer line demonstrates the radiotherapy portal outline.(Ref MHS)
The purpose of this mark up is to make sure hands are not overtreated or undertreated, also the photo serves as a record for future reference.
For a comparison see Roger Mirka's hands on the external link below. His hands were at an earlier stage, with fewer markings and was affected by Dupuytrens on only one hand.
Also Di, from Australia shows diagnosis photos of Ledderhose on the link below.
Individual Finger Table Top TestIn order to determine the maximum extension of each finger, I've used a modification of the whole hand table top test (Hueston) to check on early stage duputrens.
It allows for taking a photo snapshot of each individual finger with a side on view.
Using the side of a kitchen worktop, I've positioned my forearm and elbow so that it fully touched the worktop, and my palm flat on the surface. I've then taken a photo of each finger attempting to extend it outwards and upwards as far as it can on its own.
For the "deformed" finger no pressure is exerted downwards to hide the reduced range of movement.
The idea here is that the digital camera doesn't lie. It is so easy with a disease of this nature to think it is better than it really is.
"D3" is the middle finger
"D4" is the ring finger
"D5" is the little finger (pinky) - marked in red because with this finger radiation less likely to help.
The finger photo marked in red is a good example of leaving it too late for radiation.
However, the remaining fingers and other hand are likely to benefit.
Contracture of the Hands ThemselvesPart of the contracture process is the hand beginning to close up.
It is worthwhile checking for contracture in the hand itself by a putting ruler on its edge across from the base of the thumb to the base of the little finger/pinky.
Comparing my two hands:-
In my left hand there is quite a gap in which the straight edge of the ruler does not touch the hand at all (base to base length 10.2 CM). This hand was treated too late.
In my right hand the ruler is just able to touch the hand all the way along its straight edge (base to base length 11.0 CM). This hand was treated at the right time.
Dupuytrens Disease StagesRadiation therapy for Dupuytrens is an early stage treatment intended to prevent disease progression. Stage N and Stage N / I are the most suitable stages.
The stages are often referred to as "Tubiana". Since Tubiana the list of stages have been modified to cater for radiation therapy.
Prof Seegenschmiedt's Diagnosis Notes and Summary:Do any fingers have deformity - if so what angle?
How many Nodules?
How many Cords?
What stage category is the hand?: Stage N, Stage N/I, Stage I, Stage II, Stage III, Stage IV
LEFT HAND: Stage I - 7 Nodules / 5 Cords - D5 "Involvement" of angle 30 degrees.
Stage I because the hand had a finger with 30 degrees deformity.
(Neither hand was at the stage in between which is the N/I Stage. This is a combination stage of Nodules, cords and Stage One with a deformity of 10 degrees or less).
RIGHT HAND: Stage N - 6 Nodules / 6 Cords - zero degrees of deformity.
Stage N because it was at nodules and cords without any deformity.
First Radiotherapy Treatment late on Monday afternoonNOTE THE LARGE AREA TREATED ON BOTH HANDS - (EXCLUDED WERE: NAILS, TOPS OF FINGERS, THUMB, BASE OF THUMB)
On the first Radiotherapy Treatment the technician took photos of the hand positions.
Shows the beam's eye view of the radiotherapy portal on the hand's surface with the lead shield cut-out placed in the machine's gantry.(Ref MHS)
Each visit to the treatment room took less than 10 minutes.
The left hand is always treated first. For each hand the "red light" is on for 44 seconds.
Positioning the hands prior to radiation treatmentsMy view was there is little point going to Germany to be diagnosed by the world's expert in the field of early stage diagnosis and treatment of dupuytrens, and then not take care in the positioning of the hand at the moment just prior to treatment.
The lead sheilding cut out as shown in the photo above was 185mm down the longest straight edge. The angle between the two longest sides, after measuring with a protractor, were at an angle of 40 degrees.
Prof Seegenschmiedt has a range of different hand lead shields depending on width and angle of specified treatment area. The lead shield was flat and looked to be about 10mm thick.
On a few occasions the radiation technicians seemed to be in a bit too much of a hurry and wanted to get going before checking the hand position.
To counteract this, I was keen to double check the positioning of the hand a few seconds prior to treatment and only start when I was sure the hand was in the right place. We are talking an extra 5-10 seconds maximum to get this right.
A couple of times, with the technician's agreement, I moved my hand towards me to make sure that the whole of the bottom third of the middle finger D3 (PIP to MCP joint) was visible and therefore treated as per the hand markings made by Prof Seegenschmiedt. In some photos I had seen of surgery for Dupuytrens the cut line ended just above the PIP joint.
I asked for a photo of my hand under the lead sheilding to be taken with my own digital camera on the first radiation treatment appointment, after the technician had taken the positioning photo for the Strahlenzentrum. This only took a few seconds. I went down to Staples (halfway on the walk to the Strahlenzentrum) and had the image of my hand under the lead cut out printed out.
It struck me that the area of cords near the base of the thumb that Prof Seegenschmiedt had marked out and also discussed in the consultation was not included in the treatment area. This was his plan as the markings on the right hand show the treatment line excluding the cords indicated near the thumb.
I discussed this with Prof Seegenschmiedt in the second consultation whose view was that the hand should not be undertreated or overtreated. However I angled the hand slightly to make sure this area near the bottom of the thumb was included in the treatment.
After positioning of the hand was complete, a "radiation therapy bolus", which looked a bit like a flat and wide waxy bean bag was put over the surface of the hand.
Radiation Treatment Schedule
First Week - Each day receiving 3Gys of radiation. Total for week 5 days x 3Gys = 15Gys.
Second Week (3 months later) - Each day receiving 3Gys of radiation. Total for week 5 days x 3Gys = 15Gys.
Total dosage = 30 Gys
"Gy" is the symbol for the "gray" which is the unit of measure of the absorption of ionising radiation.
For the second visit 3 months is defined as "12 weeks later plus or minus 2 weeks".
"Seegenschmiedt 1997" ProtocolI was treated above using a protocol published in an 8 year study which was started in 1997.
To see the full image click on this link at the International Dupuytrens Society Website:
Treatment Protocol 1997-2005 Seegenschmiedt and others
This is a link to a .pdf file of a lecture on the Dupuytrens study 1997-2009 comparing different radiation protocols:
Seegenschmiedt Dupuytrens Study 1997-2009
A textbook called "Dupuytren's Disease and Related Hyperproliferative Disorders: Principles, Research, and Clinical Perspectives" was published in Jan 2012.
On Page 355 the protocol used at the Strahlenzentrum is described:
Dupuytrens.org Seegenschmiedt pdf file
Technical Specification for the Radiation Treatment I receivedQuoted from treatment course information letter:
Use of 4 MeV electrons / 5 mm bolus / lead individual absorber adapted to the RT Portal
with 60 degree angle and 12 cm length, broad base.
Second Consultation with Prof Seegenschmiedt at the Strahlenzentrum, HamburgProf Seegenschmiedt reviewed the treatment week and documentation. He then advised on checking and documenting my own hands every 3 months making notes of changes.
Information for left hand and right hand of:
Number of nodules
Number of cords
Size of nodules
Length of cords
Percentage increase or decrease
Function / Grip, Spreading.
Checking the early stage cords below the surface is probably the hardest item on the list.
After Radiation Treatment CareProf S advises on reducing "mechanical stress" and "chemical stress" on the hands after treatment, particularly in the first 2-3 weeks.
I didn't row (on the river) for two weeks after each treatment week.
Prof S advised to get some gel gloves to protect my hands. I purchased some from a cycling shop.
In Hamburg an aftercare advice sheet is provided.
Prof S also provides advice on skin cream which is well described in Roger Mirka's page.
Roger Mirka's write up of his treatment in June 2010
(This link has been put in a number of times on this webpage due to the helpful aspects of the write-up.)
Dupuytrens Radiation Therapy Questions with Prof SeegenschmiedtThere were some questions about the radiation therapy which I put to Prof Seegenschmiedt via email after the first visit to Hamburg:
Does radiation therapy work on nodules better than cords?
Is there a difference between x-ray and e-beam radiation?
What is the best minimum treatment interval?
For Prof Seegenschmiedt's email answers CLICK ON:
Dupuytrens Radiation Therapy Questions with Prof Seegenschmiedt
Photos and information have been directly supplied by Prof Seegenschmiedt for use on this webpage.
Summary and Comparison of Consultation and Treatment Charges for 2 HandsTotal costs for Dupuytrens Radiation Treatment for 2 hands, 2 weeks of visits including consultations and treatments.
Prof Seegenschmiedt, Stralenzentrum, Hamburg - 1,438 GBP (British Pounds)
(Stralenzentrum breakdown: 991 Euros first visit + 807 Euros second visit = 1,438 GBP)
(Payment was taken by VISA on the Thursday on each week.)
Comparison quotes with two private clinics in the UK were both the same price at 3,500 GBP (British Pounds)
Starting from the UK by the time I added in flights, hotel and parking at Gatwick the total difference in expense narrowed to about 1,000 GBP cheaper than the UK, but I went to Hamburg to get the best treatment available, not just to shave down the costs.
In Germany, according to another patient, prices are resricted by German Law explaining why there is the difference with the UK.
Summary of Service Provided by Prof SeegenschmiedtInitial direct consultation via email with most responses within 24 hours during the working week.
Estimate of costs for consultation and treatment.
Initial face to face consultation checking hands and feet on the Monday.
Visual hands analysis.
Manual palpation analysis.
Marking hands with areas of Dupuytrens.
Taking photo of marked hands and hand on scanner for records.
Discussion on history of condition and notes on analysis of hands of which patient receives a copy.
Decisions on which size / type of lead shielding to use.
Treatment by radiation technicians for 5 days.
Second consultation on the Thursday.
Provision of forms for recording future changes.
Provision of doctors letter which the patient has the option to send to his GP.
Provision of invoice detail.
Second week of treatment similar pattern without markings and photos as not required.
Follow up service via email for a period after final treatment.
Further photos taken by a local photographer
Further photos were taken back in England with lighting positioned at an angle to the camera in a studio by a local photographer.
This enabled the contours of the nodules to be seen better.
Prof Seegensmiedt made observations about the natural lines of my hands:-
If you compare in the the photos (link below) the natural lines of my hands:-
LEFT HAND: Natural line across hand still continuous and visible
RIGHT HAND: Natural line across hand interupted
Noting the state of the natural lines provides further clues as to the progression of the dupuytens disease.
To see these large detailed pictures of Stage-N and Stage-I click on this link:
Dupuytrens Early Stage Photos taken in a studio
NB. These photos also show the skin with rowing calluses which are not Dupuytrens.
Hotels Near to the Strahlenzentrum, Maps, Arriving from the AirportThe next section discusses the various hotels and their position relative to the Strahlenzentrum. Also the maps give an idea as to where the hotels are relative to the airport and the Strahlenzentrum.
Mercure Hamburg Airport Hotel (after April 1st 2014 "Leonardo Hotel Hamburg Airport")
Hotel Address: Langenhorner Chaussee 183, Hamburg.
A recent visitor has noted that that the name of this hotel will change after 1st April 2014 to:
"Leonardo Hotel Hamburg Airport".
The Mercure Hamburg Airport Hotel was suggested by previous travellers due to it being the closest hotel to the Strahlenzentrum. It is an easy walk on the same straight road and on the same side of the road.
The walk from outside the Mercure Hotel to the Strahlenzentrum usually took me 17 minutes.
When I arrived at the Mercure I was allowed to book into the room at 11am, although booking.com says 3pm check in time. I asked the Mercure receptionist to re-confirm my appointment time by ringing the Strahlenzentrum and I think this helped them locate me on their system. My first appointment time for the monday of the first week was 12:00pm.
On the second week of treatment on the Monday I did the same thing asking reception to give the Strahlenzentrum to confirm the appointment time which was just as well as the appointment time was 5:50pm.
Previous advice was to book via booking.com and this worked well.
On the second time around I was given the option of the same room on the floor above reception. This meant an easy walk rather than using the lift during the week.
The rooms on the floor above reception are numbered 2xx.
The arrow (on the pavement/sidewalk) in the picture above shows the direction for the Strahlenzentrum which is on the same side of the road as the Mercure Hotel. The yellow sign in the picture is a LIDL store.
I didn't want to spend too much time in Hamburg Centre, I used my laptop in the lounge area and generally stayed in the local area near the hotel. The reception staff speak good English.
There are two menus for evening meals and you can eat in the restaurant, the bar or on the patio outside if the weather is ok.
In the evening I ate up by the bar where it was quite sociable and the barman Saks from Thailand is friendly and will take your food order from either menu. This is not the cheapest way to eat. The menus had International and local dishes which were hard to resist.
There is a free wireless internet connection in the lounge area near to the reception. You get the code on a printed card from the reception and it changes daily. If you want internet in your room you can connect via a cable for a charge.
Although other reports said there is a pool, it actually closed down a few years back. There is a running machine, a cycling machine and a sauna.
The courtesy bus runs all day, however it services several hotels and has only a small Mercure sticker on the right (passenger) side of the bus and works on a booking system. After my first visit to and from the Mercure I'd say it is not a courtesy bus service which fills me with confidence as it is trying to service three hotels and even though I had booked to go to the airport they went without me without checking at reception. If you do use this service, book with reception for the set time and then wait outside looking for the bus with the stickers on the side.
The local 292 bus is a bit more of a known quantity.
To book the Mercure courtesy bus from the airport after arriving, go to the airport information on the upper level (departures). There is a free phone at information where the hotel number is stored in the phone. Arriving at the airport I booked this service but never saw the bus, so after a wait took a taxi from the upper level instead.
The "Airport Plaza" sign on the departures level (upper level) is the standard meeting place for courtesy buses.
The taxi cost me 7.70 euros to the Mercure. If you take a taxi on the lower level they might get annoyed as they have to wait a long time in the queue for business at the arrivals level.
I booked the Mercure again for the second trip. The reception and bar staff are very helpful and friendly.
On the second trip I took the Bus 292 both to the hotel and back to the airport.
The bus stop is on the same level as arrivals (lower level), straight out the exit, turn right for a few metres, and the green and yellow "H" sign is right there.
From the airport the journey costs 1.40 Euros one way to the Wischhofen stop. Alternatively if you have already bought a Hamburg card then no charge is payable. If taking the bus from the airport make sure the bus says "292 U-OCKSENZOLL" on the front. From the airport it is just 2 stops to get to Wischhofen. After getting off, the Mercure is 3 minutes walk further along the road in the direction of travel of the bus.
Courtyard Marriott Airport Hotel Hamburg
The Courtyard Marriott is quite an upmarket hotel. Out of interest I had a look at one of their rooms and was surprised it didn't have a bath, only a shower. The swimming pool looks great. The reception staff speak good English.
To get to the Strahlenzentrum it would take a 25-30 minute walk. Alternatively the 292 bus which runs every 20 minutes during the day will remove most of the walking. At peak times the bus runs every 10 minutes.
Taxi is an option both ways. There are usually taxis waiting for business outside the Strahlenzentrum.
The courtesy bus from the airport seems very regular for the Marriott and the vehicle is well marked. To book from the airport go to the information desk where there is a free phone with the number for the hotel stored in the phone. The place where the courtesy buses pick up from is the "Airport Plaza" sign on the departures level (upper level).
Another Strahlenzentrum traveller was staying at the Mein Hotel. She said it was clean, basic, no phone in the room and no evening meals. Wireless internet connection seemed to have problems. She found her way to the Mein hotel via the train from the airport, which involves one change. The reception staff speak English, not as well as the other suggested hotels. I found the reception person a bit unfriendly and unhelpful as did the traveller that was actually staying there.
The price is significantly lower than the Mercure or Courtyard Marriott.
Also the 292 bus will take you from Airport arrivals downstairs to just next to the Marriott Courtyard Hotel.
To get to the Strahlenzentrum it would take a 25-30 minute walk.
Alternatively the 292 bus which runs every 20 minutes during the day will remove most of the walking. At peak times the bus runs every 10 minutes.
Kocks HotelThe Kocks Hotel is located very close to the Marriot Hotel.
Here is a report from another dupuytrens traveller from October 2012...
I stayed at the Kocks Hotel, it is adjacent / next to the Marriott Courtyard, very close to the airport.
I booked on Wednesday before flying on Sunday for 6 nights, other hotels were not available.
It was 59 Euros per night (single person room with one bed) and optional breakfast was 8 euro per day.
Room and breakfast costs were definitely worth it. The location was very convenient, under 10 minutes walk to airport and 25 to 30 minutes walk to the clinic.
The hotel has free WiFi internet access, I had a notepad device and easily connected to the web. For those who do not have their own WiFi device, the hotel has one desktop PC computer for guests (next to the lobby), and you get free internet access there. The hotel was not fancy, but was very clean, with good service, great breakfast, great location, great price. I would choose it again.
Comparison of booking.com quoted prices for 1 person staying - 4 nights - 10th Sept 2012Mercure - Standard 349 GBP, Superior Twin 381 GBP
Marriot - 434 GBP
Mein - 141 GBP
These prices were quoted in June. Apparently hotels can get booked up in September because of holidays and festivals.
Alternatives to HotelsIf you want to add some originality to your trip, there is a way to avoid hotels.
On my second trip I came across Cristl who has posted on the dupuytrens online forum.
Cristl does not like hotels, so chose to hire accomodation during both her stays. There seem to be websites in English selling this sort of short stay accomodation in Hamburg. eg Googling "renting flat in hamburg holiday"
Walking to the Strahlenzentrum from the HotelsI drew a map with the small roads walking from the hotel area to the Strahlenzentrum.
The Strahlenzentrum is on the same side of the road (Langenhorner Chaussee) as the hotels listed on this page. On the map is Staples which is halfway. The last road on the left before the Strahlenzentrum is "Buurredder".
Click here for the map:
Hamburg Airport Area Hand Drawn Map
Bringing a rain coat and possibly an umbrella to Hamburg is worth considering.
To get into Hamburg Centre from the Strahlenzentrum, walk from the Strahlenzentrum and turn left into the road Foorthkamp and walk for 10-12 minutes. This will get you to Langenhorn Nord underground station.
LangenHorn Markt Area
The Langenhorn Markt Area is about 5 minutes walk from the Mercure Hotel along Kronsteig. From the Mercure Hotel cross over the road (Langenhorner Chausee). Kronsteig will take you up to the Langenhorn Markt area. The picture above shows the train station.
Next to the train station is a fairly large chemist shop.
On the other side of the road (Kronstieg) there is a street with a pub with an English menu, a fruit shop, an ALDI supermarket and a pizza shop.
Commerzbank is one of the nearest banks to the Mercure hotel. The cash machine is inside the building. To use the cash machine put the card in first, then select English.
Standing outside the Commerzbank with Kaufland in front of you, behind your left shoulder is an undercover shopping area where there is a handy cafe and restaurant.
Close to the Commerzbank is Kaufland which is a very large food supermarket, ideal if you want to keep costs down.
The food supermarket is on the upper level.
On the upper level there is also a cafe which sells good fresh sandwiches and also fresh pastries.
BUS 292 - A Regular and Useful ServiceThe Bus 292 takes Hamburg Card or Euros.
The 292 bus stop has a sign with an "H" coloured yellow and Green.
The bus 292 stops at the airport arrivals, then stops next to the Marriott Courtyard, then close to the Mercure, it then does a loop to LangenHorn-Markt, then heads towards the Strahlenzentrum. For the Strahlenzentrum the stop is "Foorthkamp". You have to press the stop button for the bus to stop. From Foorthkamp the Strahlenzentrum is a couple of minutes walk in the same direction as the bus and then cross the road.
The picture shows the 292 heading towards the Strahlenzentrum from the Marriott Hotel in the OCKSENZOLL direction.
(End of the line is U-OCHSENZOLL)
Wischhofen...................................... Mercure Hotel
FlughafenstraBe................................ Marriott Hotel / Mein Hotel
S-Hamburg Airport (Flughafen)................ Airport Arrivals Terminal 1 and 2
(End of the line is U-LATTENKAMP)
This bus doesn't necessarily speed things up especially if you just miss a bus, it just saves walking.
Hamburg Train Map - Airport Area
The red arrow shows "Langenhorn Markt" which is the closest train station to the Mercure Hotel. It is possible to get from the airport to the Mein Hotel by changing at Ohlsdorf and getting off at Fuhlsbuttel Nord, although taking bus 292 for a single stop to "FlughafenstraBe" is a much simpler option.
Hamburg Airport Area Map showing Strahlenzentrum location, hotels and train stations
I asked at the airport information and at the hotel for a local map and there didn't seem to be one available. I've put together a rough map of the area showing the location of the hotels, where the Strahlenzentrum is and also where to get the train into the city.
Flights from London-HamburgEasyjet had a flight arriving from London Gatwick (South Terminal)-Hamburg (HAM) at 9:50am German time. Hamburg airport is also known as Hamburg-Fuhlsbuttel Airport. I booked this adding on the additional charge for the 20kg luggage allowance.
Going into Hamburg the flight was on time on the Monday morning allowing me to check into the hotel and walk along the road to the Strahlenzentrum.
Returning there was a delay and easyjet flew into a different Gatwick terminal (North Terminal), which required taking the connecting train back to the Gatwick South Terminal. The only give away that it was the Gatwick North terminal was the sign just before customs. The flight again flew into the North Terminal on the second trip, this time I was looking for the single sign to show which terminal it was.
On the second trip there was a 50 minute queue to book in for Easyjet and it is worth keeping an ear open for the destinations they are giving priority to in the check-in queue.
The Gatwick Long Stay "Parking Plus" option saves trying to remember where the car is and means the key is safe with them in case of lost baggage on the trip.
Hamburg Airport Terminal Map
Depending on your feet and the wheels on your suitcase the Marriott and Mein are close enough to walk if necessary. This option is taken by Marriott hotel customers when the shuttle bus has a long wait.
Cash and EUROS in HamburgMost hotels, restaurants and shops will take credit cards VISA or Mastercard.
However it is worth bringing cash for use on the bus, taxis and other smaller purchases.
As I contingency on a trip to Europe I'd normally take 200-300 Euros in cash. Ideally with mostly smaller notes (20's not 50's). Any EURO notes left over may be converted back again, but not coins.
It will be possible to change to EUROS at any international airport, however the rate might be cheaper from your local bank or pre-purchase on the internet.
Having the phone details available for your bank is worthwhile as a contingency.
Mobile PhoneUnless there is a need to phone back to your home country alot a mobile shouldn't be necessary for the purposes of getting around in Hamburg.
In any case a pre-pay phone would be available for purchase if necessary from shops in Hamburg Center if required.
Beware of phoning overseas using phones from a hotel room, rates are generally very overpriced. Check rates before use!
I did use email a fair bit using the hotel's free internet access in reception.
Other Information and Sightseeing IdeasI bought a DK Eyewitness Hamburg guide book from Amazon. I found the text in this book, particularly the train map, very small. Another dupuytrens traveller had a look at it, liked it and said she would buy one for the next trip.
Buying a "HAMBURG card" was mentioned in other reports. I bought a 3 day card on the Tuesday at Langerhorner Markt train station and this covered bus and local trains. Buying a 5-day card might work out better if you are going into Hamburg Center on the Friday as well.
When visiting Hamburg it is best to be prepared for rain. Quite a few days on both treatment weeks were quite wet.
Local sightseeing near to the hotels. A walk around the public paths in the gardens area near to the hotels is quite a good way to spend an hour or so. The gardens area is shown on the hand drawn map (link below). These gardens are separate from houses and similar to the UK idea of allotments, except these gardens have grass and flowers instead of rows of runner beans.
Sightseeing in Hamburg Centre. A good place to start is the gleaming Apple Store at Jungfernstieg. From there you are right in the centre of Hamburg and have a view of the lake.
Apple Store Jungfernstieg
Other Sightseeing ideas.
I had a look at the Miniatur Wunderland model train display. Miniatur Wunderland
I was curious as it was voted in tripadvisor as the No.1 Hamburg attraction. Also a couple I met on the plane had come to Germany specifically to see the exhibition.
I did a trip to Lubeck on the suggestion of Prof S. The train from the Hauptbahnhof (main train station) cost 24.90 Euros return. Once there I did a top of bus tour of the city with a german commentary. There was a booklet in English which you could follow as you go round.
I was invited to go to Bergedorf to see a castle by some other friendly dupuytrens travellers.
This is accessible via the underground train network. Bergedorf Museum and Castle
Some of the other dupuytrens traveller reports (links below) provide additional ideas for Hamburg sightseeing.
External Links and other Patient Reports about Prof SeegenschmiedtIt's less likely that I would have gone to Hamburg without these reports below:
1) Roger Mirka from Canada wrote a very good report and covers in detail of the Strahlezenzentrum experience and other topics such as hand care after radiation and week by week progress:
Roger Mirka's write up of his treatment in June 2010
2) This is a great one page summary from the www.dupuytren-online.de website from a patient from the UK:
Advice for visiting the Hamburg clinic (1 page word document created June 2010)
3) A patient makes the journey from Australia from www.dupuytren-online.info website:
An Australian visit to Hamburg .pdf file March 2011
Links to specific reports from the International Dupuytren Society forum are listed to make them easily accessible:
4) Mike Harrel September 2010 from dupuytren-online.info forum. Mike gives a different viewpoint on hotel location.
Mike Harrel visit to Hamburg September 2010
Also on this page is a post from "txmike" about his visit with Prof S, along with a photo of the mark-up by Prof S.
This is another example of Prof S making the decision to treat only one hand (Roger Mirka also just had one hand treated).
5) Michael Winzkowski February 2011 from dupuytren-online.info forum. This report made me aware of the risk of being undertreated if I had radiotherapy in the UK. After seeing a consultant in the UK, it did turn out that I would have been undertreated if I had not gone to Hamburg.
Michael Winzkowski visit to Hamburg February 2011
6) Gary Ball May 2012 from dupuytren-online.info forum. Gary made the trip from New Zealand and gave an informative and also quite a humorous report. To see his report scroll down below the picture of the globe.
Gary Ball from New Zealand May 2012
Gary's visit was for Ledderhose, but Prof S found Dupuytrens on the hands - not enough to treat.
The report mentions the use of a "Dupuytrens scoring system" which determines if treatment will be done by Prof S.
7) Report from Nigel from dupuytren-online.info. Nigel was treated by Prof Seegenschmiedt before he moved to Hamburg
Nigel Treatment October 2005
International Dupuytrens Society, including patient forums:
International Dupuytrens Society
British Dupuytrens Society which has links with the International Dupuytrens Society
British Dupuytrens Society
According to a post on the Dupuytrens online forum, this "Seegenschmiedt 1997" protocol is being followed at a centre in the UK. This information was provided by Gary Manley who runs the Ledderhose Blogspot information site.
Ledderhose Blogspot Information Site
Compiled Research Data from various studies showing outcome percentages:
Research Data on Dupuytrens Radiation Therapy
Large Train Map of Hamburg:
Large Hamburg Train Map
Bus 292 timetable LATTENKAMP-OCKSENZOLL
Bus 292 Timetable
A question I had was how long has this method of treatment been around?
Early Report on Radiation Therapy in the UK in 1955 also in the Lancet
R Finney, British Journal of Radiology 1955
"A personal account of problems encountered with Dupuytren's surgery and an examination of the causes and avoidance of subsequent recontracture" by R.Ashby
Dupuytren's Recurrence Report
Following written permission from Prof Seegenschmiedt, I uploaded two photos of my hand to the Wikipedia site as on the talk page medical students commented that they were having difficulty in getting agreements to upload photos. I had a couple of emails with the Wikipedia administrators to check that the upload agreement status was ok.
Wikipedia Page for Dupuytren's Contracture
Prof Seegenschmiedt - BooksThis is a list of books Prof Seegenschmiedt authored or co-authored on Amazon.com:
Dupuytren's Disease and Related Hyperproliferative Disorders: Principles, Research, and Clinical Perspectives
by Charles Eaton, M. Heinrich Seegenschmiedt, Ardeshir Bayat and Giulio Gabbiani (19 Jan 2012)
Radiotherapy for Non-Malignant Disorders (Medical Radiology / Radiation Oncology)
by Michael Heinrich Seegenschmiedt, Hans-Bruno Makoski, Klaus-Rudiger Trott and Luther W. Brady (Dec 10, 2007)
Interstitial and Intracavitary Thermoradiotherapy (Medical Radiology / Diagnostic Imaging)
by M.H. Seegenschmiedt and Rolf Sauer (Jul 1993)
Thermoradiotherapy and Thermochemotherapy: Clinical Applications with Contributions by Numerous Experts v. 2 (Medical Radiology, Diagnostic Imaging and Radiation Oncology)
by M. H. Seegenschmiedt, etc., P. Fessenden and C.C. Vernon (Jan 1996)
Thermoradiotherapy and Thermochemotherapy: Biology, Physiology, and Physics v. 1: Volume 1: Biology, Physiology, and Physics (Medical Radiology, Diagnostic Imaging and Radiation Oncology)
by M. H. Seegenschmiedt, etc., P. Fessenden and C.C. Vernon (Oct 1995)
Thermoradiotherapy and Thermochemotherapy, Volume 2: Clinical Applications
by M. N. Seegenschmiedt (5 Mar 1996)
Prof Seegenschmiedt presenting in Miami at the International Dupuyren's Symposium in 2010 on youtube:
Miami Conference 2010 Prof Seegenschmiedt Presentation
Stress and the Decisions about TreatmentThere is no doubt that there is a fair amount of stress involved in making a treatment decision or just leaving it.
A really good blog which probably mirrors the fears and also uncertainties that I had and maybe alot of people have is at:-
Blog on Dupuytren's Decisions
Concerns with UK Doctors claiming to be Dupuytren's Radiation ExpertsOriginally I went for a consultation with one of the doctors in the UK listed on the International Dupuytren's Society website.
After inspecting both my hands and feet, the UK doctor marked up only part of my left hand. I took a photo of the area he marked up. In hindsight what he marked up was the area of the hand which was most easily visible to him (stringy/stretched tissue and large nodules probably caused through rowing).
It gave the appearance that this doctor had just opened up shop without any initial or ongoing training on this specialism.
He missed ALL of the Dupuytren's on my right hand. He missed the Ledderhose nodule on my right foot.
When I got to see Prof S in Hamburg he marked up both my hands and treated them both. The area on my left hand which needed to be treated was completely different to that drawn by the UK doctor.
Prof S also diagnosed one small area of Ledderhose on my right foot (not needing treatment at that point). This was later confirmed by someone shining a lamp on the bottom of my foot.
A UK based Dupuytrens treatment write-up using phrases such as "Beau lines", "a rather primitive process" and "top half of the nail is starting to fall off on a couple" is at:-
It's rather curious the UK doctor mentality of being unwilling to learn directly from Prof Seegenschmiedt's experience.
If the Hamburg option had not been available it is likely that I'd have had to opt to be treated by one the UK clinics.
Inconsistent Answers on the International Dupuytren's Society ForumWithout doubt the forum and the website is an excellent place to get initial information and particularly support.
Fears went through my mind about losing the use of my hands and reading other people's stories helped alot.
It is odd that the same questions seem to keep cropping up and the replies often seem to be different each time round. This means that we could end up choosing a treatment path based on a "passer by's" incorrect opinion. The forum gives the impression that practitioners in different parts of the world are making up their own dosages of radiation (protocols) based on a guess rather than using the published long term findings.
There seems to be a general misinterpretation of what Prof S means by "active" state. The point Prof S is trying to make is that once an area of the hand has reached COCONUT hardness radiation therapy will have no effect.
The measurement of the disease using sensations such as crawling, itching, "aliens running around the hand" are narrated on the forum and don't figure anywhere in Prof S's literature or the four consultations I had with him. I am not saying people aren't having these sensations, they just don't feature in the clinical analysis.
Prof S's main areas of analysis are: Patient History, Disease Stage, Visual analysis, Palpation by touching the hands (and also feet).
The Dubious Advice of "Wait and See"So many times you see the expression "Wait and See" on the forum, often given by non-specialist doctors. It's the exact opposite message to what Prof S is talking about in his youtube presentation.
With the benefit of hindsight and knowledge I would have had treatment in Hamburg some 6 years before. I am left with one finger permanently kinked and this really would not have been necessary if I had acted sooner.
Although I am aware of the other non-radiation treatments available, I don't like the aspect that some of the treatments are relatively short term fixes requiring multiple visits at intervals quoted as short as one year.
Wolfgang Wach, Chairman of the International Dupuytren Society is the walking proof of this treatment. He had radiation therapy on the bad hand 30 years before, but not on the other hand. The treated hand stayed dormant, the other hand now has contracture. (Source: Symposium youtube video and forum).
The "Wait & See" arguments are: It might never contract / contract badly. It might not be the right time yet.
Counter advice of wait and see (after positive diagnosis): Either decide to rule out Radiotherapy altogether or just get on with it!
Some good posts about early treatment and the Betz Diagram
This is a disease which does not follow a straight line or pre-determined path. The data states that results are best when treated as soon as possible after first detection.
Early Stage Treatment means "VERY EARLY"It was the photo of Roger Mirka's hands in his write-up that spurred me into action.
Roger Mirka's write up of his treatment in June 2010
In the photo Roger's hands show no pits or trenches of contracture in the hand itself, yet this is the only example photo that Prof S has put on his website.
When I got to Prof S'office I did feel as though to some extent I'd "missed the bus" with my left hand. I knew when looking at the photo of Roger's hands that I should have looked into going to Hamburg sooner.
Tami's StoryIn the sections above I've very much promoted the idea of going to Hamburg as soon as possible after diagnosis if within treatment staging range.
Tami's story indicates quite a progression since the initial thought process about Radiation Treatment about 15 months before actual treatment.
The "wait and see" expression crops up again in the posts.
In the staging chart above she, like my own case, is in the "Stage I" category, above 10 degrees deformation prior to treatment.
Above 10 degrees contracture is declared upfront as a reduced chance of radiation therapy working.
Her posts initially sound encouraging until her post of 22nd February 2014...
Tami's Forum Posts
Tami's series of posts are really helpful as a story about how the disease can progress over a relatively short period of time.
Also the story provides a real example of treatment not working as expected or hoped.
(Note: this story is of RT treatment in the USA not Hamburg.)
What Might Happen Without Treatment Later Down the Line?Dr Eaton has presented a range of photos of later stage Dupuytrens (way beyond the stage in which Radiotherapy would be used):
Dr Eaton's Patient Photos
These are great photos which show the potential problems which can develop.
Risks of Too Small An Area of the Hand being TreatedEffectively the only areas of my two hands which were not treated in Hamburg were my thumb and the top of my fingers.
I'm confident that this covered not only the obvious areas, but the areas which are not visible.
The UK radiation therapy doctor I visited missed the Dupuytrens on this hand altogether. He only marked up my other hand.
The objective of the radiation therapy is to include in the treatment the soft white stuff which hasn't yet caused the visible wrinkles and bumps.
After visiting Prof S I then went to my physiotherapist and showed him an invisible area near the base of my thumb which Prof S had pointed out. It took several attempts for the physio to identify the cord by touch. This degree of skill required would be inappropriate for rolling out on a large basis with the NHS in the UK.
I've not come across a published study where given positive diagnosis of early Dupuytren's, for one group the whole area of both hands are treated as standard. There is a possiblity that the "drawing on the hands ceremony" actually undermines and unnecessarily reduces the result of the treatment given.
How Popular Is This Treatment?With the commentary on the forum and the amount written about the treatment you'd think it was a big industry.
In fact Prof S who is considered as the world's expert in this speciality said in passing (in 2012) that he has about 200 patients each year from around the world for Dupuytrens treatment.
I was somewhat staggered at such a low number.
I got the impression that a fair proportion of patients were women (who often look after their health better). Also the few patients I spoke to were very well informed and had certainly done their research. Some of the information that I learnt from them I've put on this page.
Web Page Visitors from the NHSThere have been a number of visitors to this page from the National Health Service.
If a budget was put aside for research, training and treatment within the NHS please note that Prof S is very approachable and I believe has done presentations to UK doctors in the past.
State of Hands 10 Weeks After TreatmentWhen actually having the treatment I couldn't feel the radiation - apparently there would have been something wrong if I could.
June 26th 2012. It's been over a week since the treatment and no particular effects.
July 15th 2012. Four weeks after treatment. Comparing to the Individual Finger tabletop test (above).
At the moment it seems that my right fingers are now more flexible compared to the photo above.
On the left hand there is a very marginal improvement in flexibility with the exception of the little finger which is the same as before.
As per the International Duputrens Society website - radiation therapy can not make a bent finger straight.
The purpose is to stop the progression.
Although not part of the "deal" in getting radiation treatment, it seems that for non deformed fingers, flexibility can be improved by radiation.
State of Hands Update 2014Over a year on (February 2014) from the treatment and both of the hands have not changed in individual measured flexibility since the 10 weeks point described above.
The improvement in flexibility of the right hand (Stage N) which was an unexpected bonus has remained.
Unfortunately there is slightly more contracture in the left hand (Stge I) itself now, the base of the thumb and base of the pinky/little finger are now closer to each other than at time of treatment.
(My left hand was categorised as Stage I, over 10 degrees deformation, before treatment
ie. I made the decision to go for treatment in Hamburg too late for this hand).
I've written the section below following email questions I've received from prospective patients:
12 Mistakes to avoid with Dupuytrens Radiotherapy Treatment
THE FINGER ABOVE WAS PRESENTED TOO LATE FOR RADIATION TREATMENT.
1) Waiting until it's too late.
As soon as a finger can no longer fully straighten on its own it has moved from the N (Nodules) Stage to N/I (Nodules/Stage One Deformation) and the chances of radiotherapy working is starting to reduce for that finger.
If there is too much deformation or the dupuytrens is beyond active state ie progressed to Coconut hardness, then it is less likely Prof Seegenschmiedt will treat you. In my case one "beyond hope" finger was ok as the rest of the fingers on that hand would benefit.
Putting the edge of a ruler against each finger and hand will show no gap or light if there is no deformity. If a part of the finger cannot make contact with a ruler unaided then the finger is into N/I territory. (See my left finger above where the PIP joint cannot go straight).
2) Choosing the wrong doctor or wrong treatment centre.
Treatment of too small an area of the hand is frequently stated as a reason why treatment failed in the published medical reports.
3) Missing out on the second phase.
I seriously considered not getting the second phase (as an economy measure). I'm glad I did actually go for it in the end as the results Prof Seegenschmiedt has had in the past are documented as worse with only half the treatment plan.
4) Having the gap between treatments less than 10 weeks
Again Prof Seegenschmiedt found that the results with the shorter interval were not so good as with the 12 weeks plus or minus 2 weeks. Therefore in recent years he seems to have set this minimum interval. He does schedule a longer interval in some cases when a patient can not return in 3 months.
5) Mixing doctors and clinics
I considered getting the second course of treatment in the UK, rather than Hamburg. If the results were poor who would I go back to? Splitting the responsibility between clinics cannot work too well if there are questions that need to be to asked later on.
6) To Expect more than just the halt of the progression of the disease
To expect that all the nodules, cords and pits in the hand will totally disappear with radiation therapy is a mistake. For some patients there is an anecdotal extreme cosmetic improvement in the hands, but I've yet to see any before and after photos to back this up. I did however as a "bonus" get improved flexibility in my right little finger as shown in the photos. The nodules on my right hand seem flatter and smaller and less visible but are still there. On 17th December I posted a PC computer scanner image of the improvement of the worse left hand after 5 months.
7) An Expectation that bent fingers will become straight
Bent fingers will not become straight with radiotherapy. My little finger, as expected, is still bent after the treatment.
8) Failure to take good photos of your hands and to make accurate records of the disease on a quarterly basis
The first thing Prof Seegenschmiedt will ask is what date/year did you first see the nodules/cords? He will also ask about the progression of the disease since that date.
9) Confusing dupuytrens with "Trigger Finger" or "Carpel Tunnel"
These are not dupuytrens and these are worth checking out on the internet to clarify the differences.
10) Failure to watch the Dupuytrens symposium 2010 youtube video
The youtube lecture is information which is straight from the expert himself.
Miami Conference 2010 Prof Seegenschmiedt Presentation 15
To me seeing Prof Seegenschmiedt give a lecture to a conference on Dupuytrens is very informative and also gives alot of confidence in his first hand knowledge.
11) Failure to take advantage of the email consultation service that Prof Seegenschmiedt offers.
By sending Prof Seegenschmiedt photos of your hands and also your situation he will give you an opinion based on what he can tell from the information you give.
(There are times when he might be away, so if no reply after 48 hours might be worth checking with reception at the Stralenzentrum at email address: email@example.com)
In February 2014 it was mentioned on the forum that that Prof S had not responded for 3 weeks.
This turned out to be because he had been away on business and replied on his return.
12) Assuming the radiation technician will position the hand correctly
Sometimes the radiation technicians came across as more focused on getting the procedure going and pressing the button than getting the hand position right. I even went to the extent of having Staples (positioned halfway along the walk) print out both the photos of the hand mark ups and also the hand under the lead cut out for reference during the week. I wanted to make sure that the PIP joint of the middle finger was included in the treatment and on a number of occasions moved the hand towards me. In medical diagrams the finger spiral cords can extend to above the PIP joint.
A Simplified Description of Dupuytrens ContactureI've written this from a patient's perspective and my understanding of the disease to provide a simplified explanation of the disease.
As a result of a wound or ongoing wear the hands and fingers repairs themselves.
With some people during that repair process a white substance called Collagen Type III is generated.
The yellow substance can show itself in the hands in small bumps called "nodules" or strands called "cords".
Cords can be created both in the hand and in the fingers, extending up to beyond halfway up the finger.
The yellow substance making up the cords builds up over time and then the cords start to shrink in length.
It is the shrinking of the yellow substance in both the hands and the fingers that causes the contracture.
As the yellow substance shrinks in the hand, pits can begin to appear.
The normal curved line across the hand below the fingers can start to get interrupted, and in my case this line almost disappeared in my left hand.
The feel of the surface of the hand starts to change from soft to more hardened in the areas affected. Also the dupuytrens affected areas on the fingers can change from a soft tomato feel through to a hardened coconut feel.
If the hand were compared to a landscape it starts out as flat and smooth. With Dupuytrens hills, ridges and valleys start to appear. The result is that when before you could run your finger across your hand and it would be smooth, it is now becoming bumpy as you run your finger across.
For some reason the area of the hands directly below the little (pinky) finger and ring finger get affected first. In turn these two fingers often get affected first. My father has had operations on most of his fingers. (not thumbs).
In its worst form untreated can make fingers permanently bent at 90 degrees or worse.
National Health Service (NHS) in the UKTypically NHS doctors do not know about radiation treatment for dupuytrens, even though one of the pioneering hospitals for this treatment in the 1950's were British doctors at the St Thomas Hospital, London. The general overview provided in the 1950's in the medical literature does not differ that much from today in terms of indication of its overall effectiveness.
R Finney, British Journal of Radiology 1955
Trying to get assistance from the NHS, whilst is a noble effort, will not get you treated quickly or by someone with adequate experience to provide analysis on early stage dupuytrens.
Quoting the NHS website:
"you should be aware of the uncertainty about its effectiveness and the possible long-term risk that radiation may cause cancerous tumours".
This information is misleading - giving the impression it is a brand new experimental treatment and that there is no long term data.
Professor Seegenschmiedt and other German doctors have been treating with radiation and publishing documents in relation to early stage dupuytrens for over 25 years. A number of links to these documents are on this webpage. With these published documents how can there be this uncertainty?
If an NHS doctor does have enough expertise to detect early stage dupuytrens, the advice will then often be that surgery is only option. Also the patient will be told to wait until deformation of 20-30 degrees - which is the wrong answer!
NICE is a UK government funded organisation which publishes guidance based on published medical literature.
They have provided incorrect information on their website stating only one phase of treatment is necessary in most cases.
Why publish this statement on the NICE website when it is just plain wrong?
I wrote to NICE about the information on their website. A couple of letters in response from NICE showed a very third hand and distant knowledge of Dupuytrens RT treatment.
What was rather strange was that in one of the letters it said that NICE do not give guidelines on the specific treatment itself, yet this is what they have done with their webpage.
NICE misrepresented the risks implying there is a history of patients having later had cancer as a result of this treatment. The view held by the International Dupuytren Society is that there is has never been a documented case of cancer following this treatment.
As Prof Seegenschmiedt describes this as a "theoretical risk" and one which must be stated upfront prior to treatment and signing treatment consent.
Update 7th January 2014. Since the above text was published NICE have now changed the wording under safety in relation to cancer being induced to: "a theoretical adverse event".
This better represents the risks.
NICE are yet to review their guidance on the requirement for 2 phases of treatment at an interval of 10-14 weeks apart as standard for all patients.
Dr Eaton's List of Radiotherapy Published DocumentsDr Eaton, who I understand has retired from active surgery, has published a good list of original source published documents on radiation therapy on his Dupuytrens Foundation website:
List of Published Dupuytrens Radiotherapy Documents
Officially Published Data quoted from Dupuytrens Symposium "2012" BookThere is alot of data quoted on websites of which the source and its accuracy are not verified.
The most recently published text book with recent data is:-
Dupuytren's Disease and Related Hyperproliferative Disorders:
Principles, Research, and Clinical Perspectives
by Charles Eaton, M. Heinrich Seegenschmiedt, Ardeshir Bayat and Giulio Gabbiani
(19 Jan 2012)
This book is a compilation of information from the 2010 Symposium which covered all accepted methods of treatment for different stages of dupuytrens eg Surgery, Xiapex etc. This text book is a must for any medical organisation wanting to access 2012 published information.
RADIATION TREATMENT RESULTS PRINTED IN THE BOOK:
Study minimum follow up time - 5 years
Study mean follow up time - 8.5 years
On Page 360 of the 2012 Book there is the following information
Stage N progression (Nodules and cords only)
It shows that the progression of dupuytrens is only 3.5% with the current Seegenschmiedt protocol.
Data was for 199 hands with a minimum of 5 years, with a mean of 8.5 years.
(Control ie hands with no treatment - data shows 34%)
Stage N/I progression (Nodules, cords and Stage One deformity of up to 10% deformity)
There is a big reduction in success of radiation therapy at the N/I Stage, with a reported progression of 30%.
Data was for 53 hands with a minimum of 5 years, with a mean of 8.5 years.
(Control ie hands with no treatment - data shows 67%)
Radiation is used for later stages but with reducing success.
The link below is to a .pdf file which shows pages 349-371 from the "2012" book:-
Page 360 show the summary results of two different radiation protocols (dosages) compared to a control group.
Page 362 shows a summary page of radiotherapy studies since 1955.
Dupuytrens.org Seegenschmiedt pdf file
Best Time for Radiation Therapy Also Related to Elapsed Time Between First Detection and TreatmentFollowing a view that the best time for radiotherapy is at the border of Stage N and Stage N / I, Wolfgang Wach, Chairman of the Dupuytren's society commented:
"I would agree with you if the effectiveness of radiotherapy would not rapidly reduce with the time period between first detection and treatment.
If you look at the bar graph on:-
Radiation Therapy Data Page
you see that if treated within the first 12 months the probability of progression is 2%; if treated after 4 years, the probability for progression is already at 55%.
Staging alone doesn't seem to tell the full story."
Also note the newer photos comparing a non-expert Dupuytrens diagnosis compared to that of Prof S.
Why has my Doctor not heard of this Treatment?There is an expectation that a GP knows about every treatment for every disease.
This has got to be slightly unreasonable given the advances in medicine.
The NHS are unlikely to properly back this treatment in the near future, and in turn University medical books are unlikely to be updated with this treatment as you cannot get Dupuytrens RT treatment on the NHS in the UK.
Hand surgeons have been interviewed about Dupuytrens treatment and in most cases do not mention RT. If all patients took the RT treatment at the treatable stages then 85% of the hand surgery revenue might be lost. Quite a financial disencentive for hand surgeons!
There are a few youtube interviews from 2011 and 2012 where surgeons are asked about all of the treatments and do not mention RT as an option.
Surgery done well does work. My objective has been to reduce the chance of surgery being necessary.
As patients, our mission should be to do our own research relevant to our own particular case, knowing that a mix of different treatments might even be necessary over the long term.
In Retrospect Has The Treatment Been Worthwhile?Absolutely.
As far as I'm concerned I've done as much as I can do to prevent my Dupuytrens progressing.
Recently I had another look at my father's hands. He has lumps and bumps all over.
He also has multiple surgery scars both straight lines and zig zags.
It is my belief based on the published data that if I need surgery or other treatment in the future it will be minimal or even not at all.
Beyond Radiation TreatmentIt might be that Radiation Therapy is not for you or that you are at a later stage.
The diagram I've put together gives an overview of the different treatment routes available.
(Thanks to one of the Administrators of the forum Spanishbuddha for changes made to the first draft)
International Dupuytren Society Conference - Scheduled May 2015There was a specialist Dupuytren's conference in 2010 in Florida, USA which covered different treatments.
As per the 2010 conference, the 2015 conference will be jointly held by the International Dupuytren Society and the Duputren Foundation.
A provisional date has been set for May 2015 for the next conference in the Netherlands.
See these pages for updates:
Dupuytren Conference May 2015
Thanks to Wolfgang Wach and his TeamWolfgang founded and runs the International Dupuytrens Society, website and forum.
The International Dupuytrens Society is like the glue which brings patients and doctors together for the various different Dupuytrens treatments.
Without this central point of information and communication new patients would have to rely only on the knowledge of their local doctor. Local GP's in many cases will not present all of the possible options.
Has this web page been useful?Hopefully you have found the information on this page helpful in considering a trip to Hamburg for Dupuytrens Radiotherapy.
If you do go to Hamburg it would be great to receive any comments or updates which you think would be useful.
Other patients have contacted me with questions and updates and I have been able to update the page with this information.
In most cases people do not want to be mentioned by name on the page, if you do please let me know.
If you are a practitioner and feel the wording is wrong on this web page then please do let me know. If I have made a mistake then I'll change it.
If you are considering a visit to Hamburg to see Prof Seegenschmiedt and there are questions you'd like to put to me, my email address is below, taking out the spaces.
Whatever treatment path you take, I wish you the best of outcomes.
Contact InformationThe information on this web page is based on visits in June and September 2012. Things change over time - if you see something incorrect please let me know. I can be contacted at cookalastair @ btinternet.com.
A large amount of the information on this page has been provided from my own personal experience and also information direct from Prof Seegenschmiedt via email and four consultations in his office in Hamburg.
"Ref MHS" - means this line of wording was provided by Prof Seegenschmiedt.
If you no longer have the link to find your way back to this page at a later date, this page appears on the "External References" list on the bottom of the Dupuytren's Contracture Wikipedia page "Patient experience of Dupuytrens radiotherapy with photos and notes"
This document is free to use under General Public Licence 3.0
The document lays out the standard approach and radiation "protocol" for Dupuytrens Radiation Treatment as practised by Prof MH Seegenschmiedt.
Webpage originally created June 2012.
Please feel free to print to file to create a ".pdf", but please do not modify.
Additional contributors and editors are welcome to contact me.
Last update to this page - 19th March 2014