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Question on Dupuytren's Assessment Prior to RT
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01/28/2013 20:43
JeffD 
01/28/2013 20:43
JeffD 
Question on Dupuytren's Assessment Prior to RT

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

01/28/2013 20:56
callie 
01/28/2013 20:56
callie 
Re: Question on Dupuytren's Assessment Prior to RT

1) What state are you in?

2) You said, "I know they will take CAT scans prior to treatment plans being developed". I don't know how often that happens, but it wasn't at all considered in my RT. No CAT scans.

3) You said, "I am confused about the assessment of my hands and feet prior to the radiation treatments". What is confusing? Do you have nodules? Any contraction? Is the Dupuytren's active (you should be able to tell). How long have you had the nodules?

4) You said, " Am I correct that the radiation specialists conduct the assessments?" I would be surprised if the "radiation specialists conduct the assessments". You probably know more than them about Dupuytren's.

5) Are you familiar with this information? This seems to be the "smoking gun" for getting approval for coverage by insurance companies.

http://www.aetna.com/cpb/medical/data/800_899/0800.html

01/29/2013 15:19
JeffD 
01/29/2013 15:19
JeffD 
Re: Question on Dupuytren's Assessment Prior to RT

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

01/29/2013 15:30
callie 
01/29/2013 15:30
callie 
Re: Question on Dupuytren's Assessment Prior to RT

Jeff, you do realize that many (perhaps most) people do not have an advancement from Dupuytren's beyond your similar situation. I'm not sure that RT should be the standard procedure for everyone who develops a nodule. I have two nodules that developed about 13 years ago and have had no continuing development from them. The nodules are not "active". Then last year I had a nodule pop up on the other hand that I could tell it was very active and was starting to develop a cord. It was "active" and I had RT.

01/29/2013 15:31
spanishbuddha 

Administrator

01/29/2013 15:31
spanishbuddha 

Administrator

Re: Question on Dupuytren's Assessment Prior to RT

JeffD:
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
ProfS uses a scoring system, based on a number of variables, to decide whether to treat or not.

Some of these variables will include responses by the patient upon being questioned, such as: any pain, tenderness, tingling, aches, and so forth in the last few months; any skin changes in the last few months; any new nodules, or nodule changes, or cords developing in the last few months; and so on.

Other variables include those derived from a physical hand examination and palpation. Examples are degree of nodule hardness; skin blanching on extension; nodule edges and freedom; and so on.

He tots up the scores and makes decision. Sometimes it's a clear decision, sometimes not, and he will discuss it with the patient.

In my own case my left hand was a clear decision for treatment, and my right fell below his scoring - and he explained why he would not treat it with RT when I was evidently disappointed!

01/29/2013 16:18
lori 
01/29/2013 16:18
lori 
Re: Question on Dupuytren's Assessment Prior to RT

Jeff,

I was diagnosed with DD by a hand surgeon/specialist. I understand your thought process as to having a hand/foot specialist advising, but I know that did not occur in my treatment. I had an MRI which was standard protocol for that center, some use CT scans or other types of imaging equipment. Using the MRI Dr. Crimaldi could see exactly where and how deep to radiate. He understood the German protocol and how to treat DD.

As to knowing when DD is active. I believe that knowing if your DD is active is based upon information you provide. I took pictures, documented changes in my hand and how fast those changes were occuring. I also had quite a bit of pain, tingling, itching and a crawling feeling in my palm. Those feeling alone would have been proof to me that my DD was active. Not everyone has those types of feelings. I suggest that you document feelings, aching, tightness, how easy or hard it is when doing certain activities like using a screwdriver or lifting. Changes in these would help you determine how rapidly yours is progressing. My hand changed every week, therefore from my preception it was very active and rapidly progressing into contraction. Time runs together when trying to remember if you have a certain ache 2 weeks ago or was a certain activity harder to do now than 2 weeks ago.

I see you are in Georgia, have you thought of seeing Dr, Crimaldi in Charlotte, or is Dr. Weiss closer to you?

Lori

Edited 01/29/13 18:21

01/29/2013 18:36
JeffD 
01/29/2013 18:36
JeffD 
Re: Question on Dupuytren's Assessment Prior to RT

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

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