Hello Mike,
First to the weather: It will be very cold, snow, rain, etc. but, if you bring the right cloth you will be fine. My husband and I went shopping, we are from California, and bought good jackes, boots, thermal underwear, etc. We did just fine and nothing stopped us. Oh, don't forget the umbrella!!

My treatment: All went well, no side effects. At this point time will tell. I should know in about 6 month if my DD will progress, as of right now I have to say nothing is progressing. All is the same. Prof. Seegenschmiedt, what a super nice guy, great doctor, just a terrific man, gives my left hand a 90% chance that treatment worked and my right hand, has already cord, a 70% chance. He said, should the need arise, I should to NA, should wait and give it time, which I will. I use lots of lotion, so dryness is not a problem. I will start my excersices soon, as of this point I do lots of stretches. My hands ache a bit when I do the streches but nothing I could not handle. I have to say, that constant ache, strange feeling of alien invasion has gone.
Seems my wrists are acting up, almost like carpal tunnel. My hands get that numbness and tingling, so at night I use a brace, which helps.
Also, when I hold my phone for a long time, I noticed that yesterday, my fingers go numb. Go figure. I am not going to worry about it.

Don't sit in your hotel room, go to the Hamburg museum, great museum, they also have a nice restaurant on site. There are lots of museums in Hamburg, pick what you would like. There is a tourist info at the main train station (Hauptbahnhof). For your wife there is a 5 story, very modern mall with great stores. They also have a nice international food court. Enjoy Hamburg, forget about the weather.

Viel Glueck und viel Spass in Hamburg,

Christl

Just wanted to add that I don't want my posting about needing a third round of RT to discourage anyone from getting it. This does not at all mean that the RT was ineffective. I am EXTREMELY glad that I did it. I have very aggressive DD and I have no doubt that by now (about 2 years after nodules started appearing) I would have significant contracture in both hands. (I have DD in both hands and in all but one finger, including my thumbs.)

As it is, I have a lot tightening, and a teeny contracture on one finger, but nothing that really affects me. I also had NA done on my right thumb, as the tightening there was really starting to bother me (since I'm right handed, that thumb definitely gets used a lot).

The RT did halt or significantly slow the progression in most parts of my hands. I think the reason I've had to have repeated sessions are: 1) I have a very aggressive case; and 2) I think the treatment area margins were not large enough in my initial RT session, so I ended up having new nodules develop right at the edge of the treated area. (Dr. S. thinks the margins weren't large enough, and this makes sense to me given the location of the recurrence. This is one reason I would recommend to anyone that they go to Dr. S. rather than a doctor less experienced with DD. There are many fine radiologists in the U.S., but none of them have the extensive experience with DD that Dr. S. has -- though hopefully we will get there soon!)

Maddie
Washington, DC

The first treatment was effective. However, about a year later, a new nodule developed right outside one of the treatment areas. Since the margins of the old and new areas overlapped, it wasn't possible to just treat the new area without also treating the area that had already been treated once.

And yes, after this third round, some parts of my hand will have been treated 3 times. After consulting with Dr. S. on this, I feel that the benefits of the third treatment outweigh the risks. Also, even with 3 rounds, the total amount of radiation is very low compared to treatments for many types of cancers.

Hope this is helpful!

Maddie

Maddie,

Do you wear or have you worn a night splint? Mine has made a difference in countering the tendency to tighten and contract. Mine was custom made for my hand and I think a custom one is most likely needed for most hands.
Each hand is so different and since my contracture involves the whole palm and meta carpal joints, it would be unlikely that a stock design would work. I shopped online for something that might work and there was nothing.

Think about trying a splint.

Flora

i am newly diagnosed with DD in both hands - nodules for a year and a thumb cord for two months. i am scheduled to see a hand surgeon for what i thought would be collagenase and then someone in charlotte nc for RT. after reading this post i think should go to gemany. In someones post (John-personal experience) he said the Germans said do not do RT in the US. Is there no one with enough experience?

No one has discussed US insurance and German RT. Has anyone been reimbursed?
Thanks,
Marge