| Lost password
100 users onlineYou are not loggend in.  Login
Ledderhose .Essen Experience,Germany.
 1
 1
10/14/07 09:38
newman 
10/14/07 09:38
newman 

Ledderhose .Essen Experience,Germany.

Australia Calling.Hi I am touching base re my experience at Alfred Krupp Hospital .I have M.D. in both hands and have Ledderhose in the left arch .(nodule and a band.) I visited Prof. Seegenschmidt who by the way was a great guy having devoted his life to getting on top of this disease. After consulting with the prof. and another surgeon I decided to have Radiotherapy.The prof identified that my right foot was also under way.
I received treatment on five consecutive days for 3 minutes at 3G.on both feet. I wear authodics in my shoes and do a bit of cycling .The prof. recommended I continued with this practice to reduce immediate pressure on the nodule. He was an advocate of using a creme containing urea or even Vasoline to keep the skin soft. We did a lot of walking in Germany after the treatment and I had no problems. I stayed in a hotel walking distance from the hospital and the manager ,a 40yr had just had surgery on both feet to remove nodules . He was not even aware that radiotherapy was an option .We are all in the same boat no matter where we live ,We generally finish up in the hands of specialist who was recommended by another specialist . I would like to give thanks to the Dupuytren Society for the information on its web site. I will return for another session of treatment in December. I will keep in touch from .down under.

01/26/09 19:57
Marisyl 
01/26/09 19:57
Marisyl 
Re: Ledderhose .Essen Experience,Germany.

Hi,
I posted questions in another place, then found this.
If you traveled to Germany from Australia for treatment, you must have had good reasons. I live in the US, have early stage Ledderhose, and want to zap it right away before it gets worse. I have some practical questions about your stay in Essen.
Did the doctors speak English? Were you easily able to find a reasonably priced place to stay? Any other logistical problems?
Thanks for any information.

01/28/09 06:29
newman 
01/28/09 06:29
newman 

Re: Ledderhose .Essen Experience,Germany.

Hi Marisyl Australia Calling. Briefly I went to Germany as result of info I found on the Dupuytren Society web site to investigate Radiotherapy ,as at that time ,like the US, in Australia it was not offered for the treatment of Dupuytren /Ledderhose. I was told the Germans was the world leaders in the treatment of Non Malignant Disorders with Low dose RT. To answer your question -Professor Seegenschmiedt speaks excellent English having conducted many forums worldwide. His secretary( frau Giebels )also speaks english.(email address phone no. on this site ) All the radiotherapists spoke school english.
I stayed adjacent to the Essen Messe at Hotel an Der Gruga.(recommended by frau Giebels.)She had various hotels available. A double was 125 Euros with breakfast. (all speak english.) I walked to the Alfred Krupp Hospital 10 mins.) . For Info I flew into Frankfurt Airport -had breakfast -caught the train in Airport. (Having reserved a seat in Australia online{ Deutsche Bahn }on the Inter City .)( We purchase a Twin Rail Pass on line -first class or 2nd class - only for foreigners -good value .)(This rail pass can also be purchased at the Main rail stations -same value ) Essen is about 2 hours from the Frankfurt Airport. In Essen the hotel is 4 stops on the underground. We used the time as a holiday . I had treatment early, which left the rest of the day .I opted for the two visits 5X3Gy treatments whereas some opt for the 7X3Gy which means one less air travel . Cost of treatment is less 21 Gy as opposed to 30 Gy.For further info- click Personal Experiences. Regards from Down Under.(Hot here today 45.7C. in the shade. The apples are cooking on the trees)

Edited 01/28/09 08:07

01/28/09 23:44
Marsyl

not registered

01/28/09 23:44
Marsyl

not registered

Re: Ledderhose .Essen Experience,Germany.

Hi Newman,

Thanks so much for all the practical information. I have hoped to visit Germany under better circumstances, but so be it. I will get in touch with Professor Seegenschmiedt to work on the next steps. The nodules appeared about two months ago, but I've had the knucle pads for many years; they'd been diagnosed as a form of arthritis, but now I know what they are. I will have to go to Germany alone, as we have booked an apartment in Venice for a month this Spring, and my husband, a software engineer, cannot take any more vacation time.

Thanks for the transportation and hotel information, too.

As I live in California, there is quite a time difference for Europe (and Australia, too, of course).

Thanks again for your prompt response, and all your contributions to the forums on Ledderhose.

Best regards,

Marion

 1
 1
Dupuytren   Seegenschmiedt   Australia   radiotherapists   English   specialist   investigate   treatment   recommended   Seegenschmidt   consecutive   information   Ledderhose   Experiences   contributions   transportation   Experience   Germany   circumstances   Radiotherapy