It would be a good thing if each center would present their special program and
experience and their method to work with their patients on this forum.

I agree that technical wise every place can give the same treatment, but not
with regard to the judgement what really has to be treated and what areas not ...

In an unexperienced center you have a much higher risk to get much more
than required or much less than needed as treatment

Unfortunately their is no chance of second opinion and judgement. Nevertheless,
we can hope that skills to examine and experience in long-term follow-up will
increase the level of knowledge outside Germany to an international acceptable level !

I was very fortunate to have met Prof Seegenschmiedt and had a huge personal
benfit from his long-term expertise in this field.

Larry

Edited 01/19/11 23:04

debrr:

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Drumhead/Steve, You are inspiring to all of us! Thanks for your great posts!! Please keep us updated!
Debbie

drumhead:

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Insurance won't pay for rental car, but will pay for taxi = ha, go figure that one out.

I too really appreciate your detailed updates. It is very heartening to hear that knowledge of RT is spreading among radiologists in the U.S. I wish you the best!

As another person from the US who has gotten RT, I wanted to weigh in on the US v. Germany controversy. I thought hard about this issue before getting my first treatment. (I would have said "long and hard," but unfortunately, my DD was growing so fast that I didn't have a long time to ponder and research this decision -- I knew I needed to move on it quickly).

I ended up getting RT at Scripps in San Diego. The decision was made partly due to personal circumstances, as it was a tough time for me to travel outside the country. I did need to travel and pay hotel bills to go to San Diego, because there was no one local with experience in RT for DD, but that seemed easier than traveling overseas.

I was very pleased with my experience at Scripps and had excellent results over the 10 months following the treatment -- the very actively progressing disease stopped in its tracks, and over the next 10 months my nodules shrank considerably. However, as I've posted elsewhere on this forum, I had a recurrence at 11 months after RT, with a new nodule appearing right next to my largest previously-treated nodule.

I am now in the process of deciding whether to go back to Scripps or to go to Germany. I have been in correspondence with Dr. Seegenschmiedt, who thinks I may have been undertreated -- that either the margins were too small, or that the protocol used by Scripps (2 gy x 10 days as opposed to 3 gy x 5 days) is not optimal, as he thinks the larger daily dosage of 3 gy is more effective. Or, it could be some of both.

My conclusion from all this: 1) If I had it to do all over again, I would go to Germany for the initial treatment, as I think I might have received a more comprehensive and aggressive treatment that MIGHT have prevented the recurrence. (No way of knowing for sure.) 2) The most important thing, though, is that I did get the RT, and got it before my hands got too bad. I am VERY thankful that I made that decision. And thankful to all who provided information on this forum that helped me make it.

I think it's an individual decision, and a number of factors can come into play, including how extensive and aggressive your Dupuytren's is. To me the most important thing is to do the research, go with a doctor you trust, and don't delay.

I also wanted to comment on a couple of specific issues raised. Re people whose lives are so busy that it is "impossible" to travel oversees -- I think that is a matter of personal values and priorities. Most of us are probably very busy -- I certainly am -- but for me my long-term health is one of my highest priorities, and I will put other priorities aside, take sick leave, spend savings, etc. to do what I think will be best for my health over the next 30+ years of my life.

And regarding insurance coverage for RT in Germany: this may not be true for everyone, but I have Blue Cross and have been told that they do cover treatment overseas. They will cover it at the non-participating provider level, and therefore pay a lower percentage of the total costs. But since the treatment is much cheaper in Germany, I don't know that my total out of pocket costs will be much more, if at all.

Anyway, I hope this is helpful to some of you facing these tough decisions.

Maddie

Edited 02/21/11 00:37

Just a refresher of what was done to my feet at OU with Drs Herman and Matheson. These are the details, one week, five days, a total of seven (7) treatments with the following:

12 MEV
300cGy per foot per treatment
7 treatments
0.5 cm bolus on skin

Results are slow, but I am certain something is happening in the positive arena. The nods seem like they were more pronounced, separated, now they seem to be smoothing (getting smaller?) and the skin over them looks more smooth and the pain is still there, but I'm gonna find out in the next few weeks as I go back to walking, jogging, hiking, golfing, etc. Dr Herman said it takes some time, and I think it's finally doing what it's supposed to do.

More later = gonna pressure them, stress them some, it's been five weeks, time to test 'em. But, I DO believe it's working.

O of U is a great place to get this done, too. all of them are A+++++++++++

Drumhead