The 7 treatments actually take 3 weeks to receive. The 7 treatment or exposures are done every other day (Monday, Wednesday, Friday) so one needs to arrive in Essen by Sunday and be diagnosed by the professor and scheduled in for treatment, which may not necessarily be started the same day. You need to stay in the area for at least two weekends during the treatment period, so best case you would be in Essen for 17 nights, and more likely for 19 nights. This is something that is not explained until you arrive in Essen at which time it may be difficult to alter your hotel and travel arrangements. I made arrangements and corresponded with Dr. Seegenschmiedt's secretary and then learned after I arrived and meet with the professor that I only had time in 2 weeks to get the 5 day series and would have to make a second trip to Germany from California and spend an additional 6-7 days there.

With the 5-day treatment (done twice) you get an exposure every day for the course of a week so it is possible to get your diagnosis confirmed and a treatment plan and treatment area done on Monday and be done by Friday. The treatment area is an important aspect of the diagnosis and XRT. Professor Dr. Seegenschmiedt found through palpation a much more extensive area needing treatment on the hand with less contracture than had been assessed 40 days earlier by Dr. Denkler who performed a NA on both my hands.

I believe that if the XRT is largely to prevent the worsening of my condition it was actually more important to treat the less affected hand. I would not recommend have XRT on just one hand (or foot). Had I received the XRT in the USA I doubt they would have accurately determined the area to be treated based on my experience.

The equipment used in Essen was an older technology but a machine that requires less precision in its use. I received my second series of treatments at the University of San Francisco Medical Center, which is a teaching hospital and therefore both receptive to new approaches to treatment and much less inclined to hide behind concerns of possible malpractice claims. The used a linear accelerator device for the XRT and I need to also pay for a scan so that Dr. Penny Snead could be sure of the settings to use. Dr. Snead and her entire staff were a real pleasure to be around and very supportive as was Dr. Seegenschmiedt's people in Essen - very atypical of the medical care I have received in the USA overall in my 50+ years.

In terms of cost, I had both hands treated for 5 days and was billed about 800 Euros ($1200) in total. The second round of 5 treatments was done in California and the amount billed was over $8000. Interesting in that I was treated as a alien visitor in Germany for so much less than as a resident of California by a state funded medical hospital. So you can probably guess my take on whether the United States should have nationalized health care like the rest of the civilized world.

Bruce

Hi arogers,

I'm so glad you got in touch with Dr. Kuhn! That must have been the same day that I called to schedule my radiation with her...I was telling the receptionist that I was really glad I could get the radiation treatment in the US and I asked her whether they get a lot of people there from out of state, and she said she'd just been on the phone with a guy from Atlanta. Funny! Best of luck to you getting this to work for you in Atlanta.

Megan

Edited at 07/22/08 07:38

Glad you found someone nearby to do the XRT. Strongly urge you to have both hands treated. My left hand showed the greatest progression and I had XRT on both hands. The XRT seems to have completely halted the progression in my right hand and much less so with my left hand. The earlier the XRT the more beneficial the results and unfortunately my Dupuytren's was not properly diagnosed or treated by my original physician, Dr. Dawn Motyka, who even performed acupuncture (before I realized the true nature of the problems I was experiencing with my hand).

Try to get both hands treated with X-ray if you can as doing so is much more likely to halt further progression of the disease. If you have it in in one hand you can be sure it is also in your other hand, just not as prominent at this stage. All the surgical treatments are designed to correct the damage but do not halt the progression - only slow it down to varying degrees.

The concern with self-diagnosis is not relevant with regard to Dupuytren's in the USA. I was mis-diagnosed by my primary care physician and this delayed treatment by 6 months. I was then advised by a certified surgeon who teaches at Standford Medical that my best course of treatment was open hand surgery which would entail the use of a tourniquet for 90 minutes or longer during the operation followed by 3 months of physical therapy for my left hand.

I did my own research of the medical literature and quickly learned of the high rate of complications from open hand surgery due to the use of the tourniquet and from injury to nerves and that complete use of my hand could take up to 12 months. The NA procedure was dismissed by the surgeon as too risky and not likely to last more than a couple years at best.

I had my Dupuytren's progression diagnosed by Dr. Denkler who performed a NA procedure on both hands though he did not think that the disease had really progressed in my right hand as I had a minor contracture and only a single nodule.

When I visited Professor Seegenschmiedt in Essen he palpated both my hands and in his opinion the disease has progressed throughout my right hand as well as my left. As a result the XRT was done equally on both hands. The primary benefit has been with my right hand which in the past 18 months has been completely stable with zero observable progression of the Dupuytren's.

So my opinion on the value of the ability of an American doctor to accurately diagnosis the extent of the Dupuytren's is that the odds are less than 1 in 1000 that this will occur. How many Dupuytren's patients has the doctor in La Jolla seen, palpated their hands, and treated, and been able to observe the relative success of the treatment 2-5 years later?

Dr. Penny Snead directed the second set of XRT for my hands in San Francisco but did so only because she could refer to the diagrams showing the area to be treated that had been personally prepared by Professor Seegenschmiedt 3 months earlier. She was smart enough to realize that she did not have the necessary background to make an accurate diagnosis of the area needing treatment.

I have full use of my right hand but the contracture has returned with my left hand. I believe that had I been properly diagnosed by my primary care physician and treated by Professor Seegenschmiedt at that time my left hand would also be stable. Instead I am faced with the need for periodic surgical procedures over the next 20-30 years.

In weighing the risks of skin cancer (as the XRT does not go down to the bones) versus the risk of the loss of the use of my hands, for me it was an easy decision to go for the radiation treatment. Knowing I had Dupuytren's at some stage in both hands it made no sense to not treat both hands from a medical perspective alone. With XRT it is clearly thought by Professor Seegenshmiedt that delaying treatment greatly reduces the long term benefit of the treatment.

I am registered, but not sure what I am doing wrong....last post said I'm not registered! Please advise!

Megan L