Hallo Wolfgang

I just registered and will send you the application as well along with the fee. Most likely I will contribute funds as I think you're doing a great job with this site and the information.

I am 60, German national and live in the US (Tampa, FL) since 25 years. I frequently travel to Europe on personal and business matters. I registered on the US site but I assume it's somewhat linked to the German site as well.

I noticed changes in both hands several years ago (small knots, front palm towards ring finger joints) - The knots grew larger and the movement of the ring finger on the right hand became somewhat strained. Since a year the growth seems to accelerate (mainly in the right hand) and the tendons on the ring finger and the middle finger start to get stressed. I have visible knots on both palms - no restriction on the left hand yet and only a minor problem to straighten the ring finger of the right hand (roughly 1-2% max bending if anything). I still can straighten the hand but I can see it's getting worse on the right hand and a knot appeared on the ring finger inside over the tendon and right next to the finger joint. I can feel it's an extension of the knots that grow in the palm further down towards the center.

5 Months ago I consulted a highly recommended hand surgeon in Hofheim/TS (near Frankfurt), close to my sister's place (former nurse) and they told me about the D-disease. I also learned from my sister that our father had the same issues (so thanks to the genes I'm dealing with it now as well).
The doctor told me I would be still mild and I should wait until I see the finger getting bend much more - after that I should get hand surgery.
Thanks god I found your site and the alternative treatment options. Obviously, the medical society is ill-informed about such treatments otherwise they would not tell people to wait until severe restrictions become evident. I'm a former Bio-chemist and worked in Frankfurt University hospital for many years (cancer research) prior to moving to the US so I'm well informed about biological processes.
I read everything on your site and I am glad I did since RT seems to be always an option and worth a try if done early enough. In my case, I believe I'm still a good candidate for RT and it seems that some of the German specialists have the most experience with this treatment and disease. It also appears as that the German radiation protocol is followed soemwhat by other therapy providers.
I'm in Denmark every month for business and I have family in the Frankfurt area - consequently, my choice would be Germany (preferably Frankfurt or Bad Homburg). Are there any experience reports from treatments in the Frankfurt area? Would be helpful to avoid having to go to Essen or the other places that seem to have produced good results?
I would very much appreciate information about the following:
* Do I need a "Ueberweisung" first before I can see a RT specialist? or is it possible to go directly to the treatment location and have them set up a protocol for me? After all, I know what I have and what I want to accomplish - no further consultation at another hand specialist would make a difference.
** Do the treatment centers have a specialist that can review my hands and the status and get right at it to save me some time?
*** Are there any reasons why not to treat both hands at the same time?
**** Can I speak to a specialist at the treatment center via phone and get the ball rolling and expedite matters (I'm privately insured and the procedure will be covered as well as any consultations)

I believe I know why the typical hand surgeons recommend waiting - they probably know about the side effects and the intrinsic difficulties of the procedure that requires a very careful and experienced surgeon to avoid damage to nerves and tendons and keep scar tissue formation to a minimum. Reading through some of the screwed up surgeries in your blogs seem to validate this notion and just a run-of-the-mill surgeon is most likely not up to the task.

Please let me know what you think. I'm quite busy and can't afford to hang around in Germany for extended time period but I also won't miss the opportunity to save me more trouble down the road if I don't address this quickly and now.

So a good pro-active game plan and timing seems essential and I hope you can help me with choosing the proper path.

Your input is much appreciated (Antwort in Deutsch ist auch in Ordnung)

Gruss

Michael

Edited 11/19/10 13:59

I can't give you info about RT in Germany other than what others have posted since I had my RT at Scripps La Jolla/San Diego. You might try a search using the "Search web site" in the left column and maybe use "RT in Germany" or something like that as the subject. Others have posted details about their experience there.

I do think you are on the right track to get RT while it is active and in the early stages.