Hi Penny,

welcome to the forum! You already know it, so I don't need to tell you that it assembles a lot of helpful experience.

Here are my 5 cents: For Dupuytren's or Ledderhose there is no obvious advantage of electrons vs. x-rays. Both have the same effect, at least that is what radiologists tell us. The difference is the equipment which is more sophisticated for electrons and which makes e-beam treatment more expensive. But x-ray machines are not available everywhere and e-beams are increasingly being used in cancer treatment and are therefore more readily avialable.

Only your doctor can decide whether one trip is enough. An option might be to give it a try and if it is not enough bite the bullet and have a second round. But you need to discuss that with the RT doctor. If you consider going to Seegenschmiedt you might take a picture of your foot, mail it to him upfront (provided the nodules are clearly visible), and ask him that question.

Wolfgang

Penny:

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Is there an advantage of electron beam vs x-ray? Also does it always take two trips, or is that dependent on the size, progression, etc. of the Ledderhose?

I had RT on one hand in Germany in February and June. The protocol used was 5 x 3Gy over 5 days followed by a break of 12 -15 weeks and then repeated.

Hamburg is a wonderful city, but so much better in the warmer spring, summer, autumn months. Think Continental pavement cafe style life, parks, lakes, cycling.

Another forum member recently went and had her feet treated. In the first session she too was concerned about the walking and at the time felt she had overdone it during the treatment. Search on user 'cyclist'. I believe all is well now and on the way to recovery. Hamburg and surrounds is an area of easy transportation and especially cycling; bike rental is easily available from many places in the city centre. I used this to cut down some walking since I suffer from a different problem with the feet.

Best wishes

Hamburg is good choice !

You definitevely get the best doctor with regard to long-term clinical experience and background knowledge about Ledderhose Disease; he is a very skilled examiner and observer of this disorder; I had recently my 4th follow-up visit in Hamburg with Prof. Seegenschmiedt and he really seems in much better shape than I have experienced him during my first round of treatment which was done with orthovolt X-rays in Essen; apparently he left the hospital because the adminstration took a bad development and his work conditions worsened dramatically ....

In Hamburg the Prof works in a private clinic and under very good atmospheric conditions; apparently he frequently sees patients from abroad, as the waiting room had already two patients - one from Canada and another one from Hawai (!!).

With reagrd to my personal situation: My nodules - initially very painful and fast progressing have been irradiated with the protocol of Prof. Seegenschmiedt (10 x 3 Gy in two series of each 15 Gy within 3 - 4 months) and are now down in size by more than 50% and the pain and my difficulties to walk have completely disappeared.

The examination and documentation by Prof. Seegenschmiedt is excellent. He uses markers and a photocopy machine to document the situation before radiotherapy. He handed out a copy to myself which enables me to compare the results "lifelong" as the Prof. stated. He also explained me the difference between orthovolt X-rays and electrons and it appearde to me that electrons give a better coverage to the edges of the field and with regard to a homogeneous depth dose distribution.

So , dear Penny, I wish you best success with HAMBURG - a beautiful city ! - and this doctor who seems to me "the best in the field" ! ...

Edited 07/31/11 19:05

Hello again everyone, just to bring you up to date.
In July I went back to Hamburg for my second week of sessions. The week passed really well. The treatment as just as professionally organised as my previous visit, relaxed and yet very efficient.

Now having completed my treatment I am able to reflect upon the whole experience, as I live in France the first trip I flew into the UK and then out to Hamburg and after treatment flew from Hamburg to UK and then flew back into France. This was very cost effective, very easy to organise. I stayed at the Mein hotel in Hamburg, which was good, if not a little noisy if the windows were open as the hotel is located near the airport. The hotel had a superb breakfast, the room was clean and internet access the whole period of my stay cost just 8€. But the big advantage was being able to walk to the clinic and then walk to the train station. I used public transport throughout this week and had no problems touring the city and outskirts for less than 25€ for the 5 days with a travel card.

The second trip my family and I travelled across France to Luxembourg, and then onto the Rhine/Moselle valleys for a few days, then we drove over to Hamburg, staying at the Park Hotel. I booked this hotel as it was described as having a swimming pool, which it did not. The breakfasts were fantastic; it was such a distance from the clinic that I had to use the car. In hindsight I feel the Mein hotel was better located and more personal. The week at the clinic passed without incident and now I have to wait and see what the medium term outcome is. After we stayed at Hamburg we went onto Amsterdam, then after a few days back into France to visit my sister who was taking a holiday and had rented a gite. Unfortunately on the second day I managed to stumble in the garden and have broken my lower leg rather badly (I now have a plate and screws holding my leg together) and I have also torn a ligament in my ankle. I spent 5 days in hospital and am now home recovering. It was such a shame to complete such a trip in this way. It has however taken my mind off my hand at least!

With regard to costs, well the treatment itself cost less than 1000€, this compares well to the quote I received from a UK of £1750. The first weeks costs were very low indeed, travel costs via ‘lowcost airlines’ helped significantly. The hotel was also very reasonably priced. I found Germany to be somewhat cheaper than France. In fact I was completely taken with Germany, the infrastructure is excellent, public transport quite remarkable and the people I met very friendly indeed. The second trip was of course more costly as four of us travelled. But unlike France there were no toll roads in Germany (and no speed limits either). If I had to go back for treatment on my other hand I would almost certainly fly. Travelling over 4000km’s is hard work. I would have not the slightest hesitation in returning to the clinic for further treatments if needed.

With regard to my hand. Well before treatment I had two large nodules which had grown rapidly, in January of 2011 I first noticed them, by April each was well over 1cm in size. The growth rate was really rapid and of great concern. I chose Hamburg because of the recommendations of this forum and also having read extensively about Prof. Seegenschmiedt and watched him on Youtube. I was initially a little sceptical, however having now completed the treatment I can say that scientism was totally unwarranted. Now after my second treatment I can confirm the nodules have reduced in size significantly. My hands are flexible and I have no feeling of growth in the nodules taking place. I anticipate over the months the nodules will reduce further in size.

I am certain as one can be in such circumstances that I made the right decision to undergo treatment and to make the effort to travel to Hamburg. For those who live a considerable distance from Germany and are suffering with this condition and are weighing up the cost vs. Benefit. Well you could always do as we did on our second trip; use the excuse of treatment to take a great holiday. Just don’t break a leg! Whatever you decide, remember to stay proactive.
Best wishes to all,
Robert.

i now have a tingling sensation on the heel of my right foot...could this be ledderhosen or just an annoyance? It doesn't hurt, just tingles...
cureall