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radiation
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04/30/2007 09:52
Diane W

not registered

04/30/2007 09:52
Diane W

not registered

Re: radiation

Jennifer,

I have both Dupuytrens and Ledderhose and completed the first series of five radiation treatments on April 28, 2007, and, so far, have not experienced any side effects. The pain in my feet has lessened, but have not noticed any change in my hands. I am receiving my treatment in Erlangen Germany, everyone is very nice, and overall it is a fairly simple process. I return for the second series of treatments in June.

When I mentioned my plan for treatment in Germany to my USA doctor, she said it was a great idea.

Where in Germany will your receive your treatment?

Diane

04/30/2007 11:13
Jennifer 
04/30/2007 11:13
Jennifer 
Re: radiation

Diane, I am going to Essen, Germany. I feel that I am doing the right thing as well. It is just that as some of you have said .... the doctors in the states can diagnose the disease, but really don't understand the disease. I just like hearing from the people that have had it done. It really makes me feel that I have made the right choice.

I am also taking the ALC! I guess it is to soon to tell if that is making a difference or not.

05/02/2007 15:45
bstenman 
05/02/2007 15:45
bstenman 
Re: radiation

Jennifer,

In response to the comments of your doctor I would take any such opinions which are not based on any solid documentation the doctor can provide, with a very large grain of salt. Doctors' opinions with regard to areas outside their expertise seem to be no better than that of anyone else. Inside their supposed area of expertise they often have a closed mind about alternative treatments.

There are risks with radiotherapy but they are no greater than for driving your car to work. To minimize the risk of any procedure, AMA and government studies show that the majority of complications come from hospitals and doctors performing the fewest number of operations. The clinics and doctors with the most operations performed in a year are more experienced and have better judgment and are far less likely to cause problems for their patients. That is why I went to the time and expense to go to Essen.

Doctors in the former Soviet Union countries had few medical resources in most instances and used radiotherapy far more frequently than would be the case in other parts of the world. This was sometimes negative as with the efforts to treat ringworm with radiation, but nonetheless they developed a much large body of knowledge on the benefits from radiation for a wide range of medical problems.

Dr. Denkler is a certified hand surgeon whom I respect very much but he failed to note the many areas where the disease was active on my right hand which had a slight contracture. When my hands were examined by Dr. Seegenschmiedt he noted that my right hand with the more mild contracture actually had more areas with damaged tissue than my left hand which had the 35 degree contracture.

As you are doing the radiotherapy to prevent further progression of the mutating cells, there is no benefit to areas where the disease has fully progressed and there is DC and scarring. I had the radiotherapy to halt the spread of the disease to more of my hands' skin tissue and limit the need for future surgery or mechanical or chemical interventions.

In terms of scarring it is interesting to note that radiotherapy is being successfully used to prevent the development of large scars after plastic surgery is performed (as with breast reductions for example). So it is not illogical to see benefits from following a NA or open surgery procedure with radiotherapy.

Bruce

05/03/2007 13:57
dave_h 
05/03/2007 13:57
dave_h 
Re: radiation

From any of you that have had radiation treatments, did you also have knuckle pads? Were they treated? and any results? Thanks

05/06/2007 09:35
Wolfgang

not registered

05/06/2007 09:35
Wolfgang

not registered

hand lotion

Hi Bruce, I guess you are already back to the US. I myself just returned home after having vacation. I was at the North sea with two weeks of sun shine and no rain, quite unusual. Global warming seems to have its upsides.

Regarding your lotion: I guess any fatty lotion that it good for your skin will do. If you naturally have fatty skin you might not need anything.

Did you enjoy your trip, besides seeing Krupp hospital?

Wolfgang

Quote:



I have just completed the first set of radiotherapy sessions in Essen. Although Professor Seegenschmiedt recommended a lotion for my hands I have not been able to find it here in Germany.

Does anyone have any recommendations for lotions availabe either in Germany or elsewhere?

Thanks,

Bruce


05/06/2007 09:41
wach 

Administrator

05/06/2007 09:41
wach 

Administrator

Re: radiation

Quote:



From any of you that have had radiation treatments, did you also have knuckle pads? Were they treated? and any results? Thanks



I never heard of knuckle pads being treated with radiation therapy. I guess (only a guess!) that knuckle pads are considered more a cosmetic problem and are therefore not being treated.

Wolfgang

05/20/2007 11:40
Jennifer 
05/20/2007 11:40
Jennifer 
Re: radiation

I just wanted to write that I am home from Essen, Germany. I had 5 radiation treatments. It was a very possitive experience. Everyone there in the Clinic were very kind and helpful. I will be going back in September to finish my treatments. I would recommend this for anyone in the early stages. I just hope it works.

Jennifer

06/08/2007 12:51
phil 
06/08/2007 12:51
phil 
Re: radiation

Hi Jennifer-
Phil here from the UK-I have recently completed the radiotherapy on my left hand with Prof Seegenschmiedt-with no problems at all.I`m a musician and was able to play a GIG in Essen the same week I was being treated.I expected some poblems viz discomfort-skin irritation etc.-but was pleasantly suprised to find the treatment to have very few side-effects-just a bit of dryness on the skin.The whole experience was pleasant and the staff excellent.I`m sure you will enjoy your stay in Essen...

06/08/2007 12:57
phil 
06/08/2007 12:57
phil 
Re: radiation

Hi Again-
I mistakenly replied to one of Jennifer`s earlier posts-but no worries-the second series of radiotherapy was as easily tolerated as the first-so far the treatment seems effective.I`m going back for an assessment first week of Sept.To my mind,Radiotherapy is the preferable first treatment for Dupuytren`s-it avoids the evident pitfalls of cutting the hand and the associated exacwerbation of the condition.Thankyou Essen and Germany to keep this treatment option alive.

06/13/2007 05:51
heybhouse 
06/13/2007 05:51
heybhouse 
feedback

Hi. I'm new to Ledderhose (had it diagnosed about 2 months ago in one foot - very early stages). I live currently live in Germany on business and I've seen Seegenschmidt in Essen and the team in Erlangen yesterday. I thought radiation would be a no brainer but the main doctor I spoke with at Erlangen (don't know her name) was very reluctant for me to get the radiation treatment because I'm 35 and she felt I was too young and the chances for the significant side effects were much greater for me and recommended I not have it done. The other doctor I saw here (the ueberartz - her supervisor) was much more cavalier about it (as was the doctor in Essen). I'm wondering if you guys have done more reading on this and might have any thoughts. More importantly for me, I'd really appreciate hearing about your experiences with it (how long you've had it, how big it has grown, how limiting had it been to walking and running, how painful is it, how fast has it grown, etc.). I have to decide fairly soon about treatment. Thanks very much!

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