Dupuytrens Contracture Radiotherapy at the Strahlenzentrum, Hamburg




Treatment Overview

Radiation therapy is intended for early stage Dupuytrens to prevent the disease worsening and then requiring surgery.
This therapy will not make a bent finger straight (and has never claimed to do so).
Once the disease has progressed beyond early stage it is less likely that Radiatiation therapy will have any beneficial effect.

Personal view on the success of my Treatment (6 years on)

My right hand improved flexibility due to radiation therapy and has not changed.
My left hand has worsened slightly on and around the little finger, exactly as predicted.
The other fingers on my left hand have not worsened.

Overall I am very pleased with the effectiveness of the treatment from Prof S.

Recent updates

23rd November 2018. I have been advised that Prof S is now based in Essen and no longer working in Hamburg.
He was contacted via the googlemail email address and a trip was made from the UK to see him.

Prof S turned down the potential patient for radiation due to the hands being beyond early stage Dupuytrens.

21st Nov 2016. pdf. download document of this web page created by a reader, Karen, from the UK (with content order changed to make it easier to read).

DuPuytren_Contracture_Radiation_Therapy_Case_Study.pdf pdf file

First Consultation with Prof Seegenschmiedt via email

I 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.

left hand 1

(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". left hand 1

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.

left hand on scannner

left hand on scannner 2012 Dec 17

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 Hamburg

My 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.

Strahlenzentrum Hamburg



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.

First Consultation with Prof Seegenschmiedt at the Strahlenzentrum, Hamburg

At 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:

Duputrens Diagnosis Prof Seegenschmiedt

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 Test

In 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.

Left Hand D3 Right Hand D3
"D3" is the middle finger

Left Hand D1 Right Hand D1
"D4" is the ring finger

Dupuytrens Contracture Left Hand D2 Right Hand D2
"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 Themselves

Part 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 Stages

Radiation therapy for Dupuytrens is an early stage treatment intended to prevent disease progression. Stage N and Stage N / I are the most suitable stages.

dupuytrens contracture disease stages tubiana


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 afternoon

NOTE THE LARGE AREA TREATED ON BOTH HANDS - (EXCLUDED WERE: NAILS, TOPS OF FINGERS, THUMB, BASE OF THUMB)

Dupuytrens Radiotherapy Treatment Hamburg

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 treatments

My 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.

Dupuytrens radiation therapy hamburg photo
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

Dupuytrens Radiotherapy 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" Protocol

I was treated above using a protocol published in an 8 year study which was started in 1997.

Seegenschmiedt 1997 Protocol

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 received

Quoted 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, Hamburg

Prof 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
Symptoms
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 Care

Prof 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.

Dupuytrens Radiation Therapy Questions with Prof Seegenschmiedt

There 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?

Strahlenzentrum Hamburg

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 Hands

Total costs incurred for me 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)
In Germany, according to another patient, prices are resricted by German law explaining why there is a big difference with the UK clinic and consultation costs.

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.

* When comparing costs choosing the Mercure (Leonardo) Hotel, as I did on both trips, is a relatively expensive option compared to the Mein Hotel which is also on the same road as the clinic.

Summary of Service Provided by Prof Seegenschmiedt

Initial 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

Dupuytrens Early Stage Both Hands

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.

External Links and other Patient Reports about Prof Seegenschmiedt

It's less likely that I would have gone to Hamburg without these reports below:

1) Roger Mirka from Canada has written several very good reports. He covers in detail the Strahlezenzentrum experience and other topics such as hand care after radiation and week by week progress:

The reports are listed on the dupuytrens contracture experiences page of www.dupuytren-online.info under Radiotherapy.

Roger Mirka's write ups of his treatment

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 - Books

This 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 Treatment

There 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 Experts

Originally 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:-

Bobs Diary

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 Forum

Without 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.

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 Story

In 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 Treated

Effectively the only areas of my two hands which were not treated in Hamburg were my thumb and the top of my fingers.

dupuytren-contracture-radiation

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 NHS

There 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 Treatment

When 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.

dupuytrens radiotherapy results hamburg

RightHand_D5_Compare

State of Hands Update 2014

Over 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

Dupuytrens Contracture Left Hand D2 deformation

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: info@szha.info)

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 Contacture

I'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.

YouTube Videos

Dupuytren Symposium Conference Video 2010:

Miami Conference 2010 Prof Seegenschmiedt Presentation 15

Dupuytren Symposium Groningen Conference Video 2015 (See screenshot below):

Groningen Conference 2015 Prof Seegenschmiedt Presentation

Dupuytrens Radiation Video





The Youtube video below is from an organisation in the USA:
USA based clinic sales presentation
I have had no personal contact with this USA based organisation but it is quite a good video about the treatment.


National Health Service (NHS) in the UK

Typically 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 Documents

Dr 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" Book

There 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)
--------------------------------------------
Dupuytrens Radiotherapy Treatment

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 Treatment

Following 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 Treatment

It might be that Radiation Therapy is not for you or that you are at a later stage.

dupuytrens-treatment-routes

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)

Thanks to Wolfgang Wach and his Team

Wolfgang 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 Information

The 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.







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