I am new to this forum and group and had a quick question to start things off. Let me first thank the Society for all of the good information on the site. The site and the forums helped me get a proper diagnosis (after having failed with several specialists and surgeons). I have Dupuytren's/Ledderhose Disease in both hands and both feet - as well as knuckle pads in both hands.

I have been in contact with Dr. Weiss at Virginia Commonwealth University and have a had a referral sent from my primary care physician. I have also contacted my insurance for pre-approval (waiting on this).

I am confused about the assessment of my hands and feet prior to the radiation treatments. Am I correct that the radiation specialists conduct the assessments? In other words, is Dr. Weiss, as an experienced Radiation Oncologist, the one to make the assessment on where treatment is need for the Dupuytren's and Ledderhose nodules and cords? I know they will take CAT scans prior to treatment plans being developed - but it seems odd that at Dupuytren's specialist wouldn't be conducting that aspect of the treatment.

Any advice would be appreciated. I am also concerned that my insurance will say "Just have this done here in state" when there are no known experienced Drs. in the state.

Thanks in advance,

Jeff

Edited 01/28/13 22:45

Thank you for the response Callie.

I am in Georgia. I have confirmed that CAT scans will be used to assist in mapping out the RT areas - so this is good. When I say I am confused about the initial assessment, I am referring to the initial consultation with the Radiation Oncologist - in this case Dr. Weiss at Virginia Commonwealth University's Clinic. They do seem to have a degree of specialization in the treatment of Dupuytren's/Ledderhose - but I would still think a hand or foot specialist would participate in the treatment plan - this doesn't seem to take place at any treatment facility though.

The German protocol places great emphasis on treatment while in an "active" state. But I have seen little information on how to gauge an active state. Mine is slow in its progression - but I do have pain in the feet and slight tension in the hands - so, I guess that is "active"

Thank you for the Aetna information. I have seen that - very helpful.

Thank you.

Jeff

JeffD:

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Thank you for the response Callie.

I am in Georgia. I have confirmed that CAT scans will be used to assist in mapping out the RT areas - so this is good. When I say I am confused about the initial assessment, I am referring to the initial consultation with the Radiation Oncologist - in this case Dr. Weiss at Virginia Commonwealth University's Clinic. They do seem to have a degree of specialization in the treatment of Dupuytren's/Ledderhose - but I would still think a hand or foot specialist would participate in the treatment plan - this doesn't seem to take place at any treatment facility though.

The German protocol places great emphasis on treatment while in an "active" state. But I have seen little information on how to gauge an active state. Mine is slow in its progression - but I do have pain in the feet and slight tension in the hands - so, I guess that is "active"

Thank you for the Aetna information. I have seen that - very helpful.

Thank you.

Jeff

Thank you Lori and Spanishbuddha - your responses were just what I needed. Thanks so much. Lori you are correct in pointing out that Dr. Crimaldi in Charlotte is closer to me here in Athens, GA. I had looked into that option, but I was able to coordinate the Richmond visit with Dr. Weiss with some work obligations. I am glad to hear that your experience there in Charlotte was a positive one. I love Charlotte and would have enjoyed that visit - it is good to know that the number of US options is increasing.

Spanishbuddha - thank you for the scoring system used by Prof. S in Germany - this is if great assistance to me as well. I do feel that my case is active as I have very tender nodules in my feet and tingling in the hands (when driving). I also have tension in my hands - and my hand surgeon here in Athens says he feels the cords. I also have the dimples in my palms when the hands are stretched out. My one remaining nodule seems somewhat dormant. My only remaining situation are the very painful knuckle pads and swollen knuckles - this is most evident when I bend my fingers. These may not be Garrod's pads - I hope to have some confirmation on this soon.

Thanks again for the rapid and informative responses. I will let everyone know how things progress with Dr. Weiss at Virginia Commonwealth. One nice thing about the clinic there is that they have a nice hospitality suite for patients - I believe it is only $15 a night. I will let you know how things go.

Jeff