how many years ago did you see Dr. Eaton?
7 years is nice delay, with surgery and skin graft you might stop the recurrence in that area
you won't get a radiation recommendation, pretty much self-referral or go to Germany

sounds like you have two options, find the best CHS in your area and have open hand surgery
or, go the RT route first, Baton Rouge was mentioned here recently, you might give that radiation oncologist a call and set up a visit or see if they can refer you to someone in your local area
some here go to Germany as I'm sure you've read, that is always the best option if it works for you

for those with diathesis version of Dups (includes me) the options and outcomes are not as good
NA and Xiaflex don't seem to work well (fast recurrence)

no, not with the current contracture of your pinky you mentioned
radiation helps with nodules, especially when they are small, it is said to possibly shrink/reduce them and slow or stop the disease progression which means the formation of cords which result in the finger contracture
so it is not a substitute for getting that finger straightened, the longer you wait the less likely it will ever get fully straight
others can tell you more about the RT

you have nothing to lose by trying it imo

Mike, thanks so much for that info. Just curious though, which institution is he affiliated with? From what I've been reading, I'll still need to have some sort of surgery to correct the contracture, but I will definitely get in contact with him before to gain his opinion.

Edited 11/10/11 02:59

I have the Diathesis, started younger than you. My hands are by far the worst. At this moment. I'm typing with a heavlily bandaged hand form my 10th surgery, a faciectomy with graft. Faciotomy and faciectomy do not work for long, only a faciectomy with graft stops the condition. I've had 10 surgeries because I did not insist on a graft on each finger the first time out, so 4 of the surgeries were for reoccurance at a knuckle (PIP) that had been previously released. Some doctors are reluctant to do grafts... if yours is, find a more experienced surgeon. Insist as well on grafts that are large enough to block the end around growth of the cords and nodules of the remnant facia remaining.

I've tried xiaflex, and will not try it again. It was moderatly effective in releasing a webbing contracture, but the lumps and bands still grow, and I will soon be planning my 11th surgery, a graft, to finish the job that in the thumb in which I received xiaflex.

Health insurance... Hope you have it, or move to a state or country with it

Career... hope you're not heavlily dependent upon your hands to make your living. If so begin training for a second career.

Bright spot.... It can be stopped, you can have use of all ten fingers , and grafting is a well-practiced safe procedure.
Another bright spot, with a palmar graft from arm to palm, you can have hair on your palm..... great conversation piece.

good luck