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Dupuytrens RT in the USA
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02/15/11 22:17
GTilford 
Dupuytrens RT in the USA

Greetings all! I have N stage Dup in my right hand and have been weighing options for radiotherapy. I am scheduled for my first consult with Deaconess Cancer Center in Bozeman, MT tomorrow. I am interested in learning how that experience might differ from the same in Hamburg, Germany. My concern is that the American choices, although housed at very fine institutions of medicine, might lack the insight/experience and confidence that I am getting from my wonderful communications with Dr. Seegenschmidt in Hamburg. I know he is the leading expert and that he knows what to look for, how to direct the radiation etc--- but I still wonder how the domestic (USA) options measure up. Any thoughts to share?

02/15/11 23:09
lori 
Re: Dupuytrens RT in the USA

GTilford,

I had treatment in the US near Charlotte, NC. I was heading to Germany for treatment until I found Dr. Crimaldi and Southeast Radiology. They had treated DD before and followed the German protocol of 5 days with 3gy and waiting 6 weeks and then repeating the treatment. They have not treated a great many people, but I felt confident in their knowledge of how to treat me. I did not need a diagnosis, I just needed treatment. I too was at stage N and had a cord that was rapidly developing and beginning to draw my middle finger inwards. Had I not felt comfortable with them and their knowledge I would have gone to Germany. I am fortunate that I am in remission. If I develope another nodule I will go back to Dr. Crimaldi for more RT. My case of DD seems to not be as difficult as others on this forum. I have 1 nodule and 1 cord while others have multiple nodules, cords and contraction. If I believe my DD is becoming difficult to treat or I develope a 3rd nodule in my hands and/or feet I will go to Germany for consultation and possible treatment. I will do this because of reading several peoples threads that talk about Dr. S. discovering nodules in their feet and hands that they were unable to detect. This greatly concerns me that even though I believe I am fine, I might not be. I have a mental plan in place as to how I will treat DD if it comes back. I have confidence as to the treatment protocol, but am wary of their being able to detect nodules. As in any treatment you go to the doctor who has the most experience. He is a specialist and there is a narrow treatment time that RT works in. I don't want to miss that time line.


Lori

Edited 02/15/11 23:10

02/16/11 16:35
lauriw 
Re: Dupuytrens RT in the USA

Lori,
Hi, I am glad that you found a doctor in North Carolina that you like. I am in Iowa and have several nodules and cords in both of my hands but do not have contracture yet so I know that I am still in the early stage for RT. I am trying to get insurance approval and they are dragging their feet. I have Wellmark Blue Cross Blue Shield and am wondering if anyone has Blue Cross in their state that has paid for the RT. Can anyone help me with this? That would be helpful if they deny my therapy and I have to appeal.
thanks, Lauri

02/16/11 17:44
callie 
Re: Dupuytrens RT in the USA

I think that we could be over-doing this preventative care for Dupuytren's. My father had/has nodules in his hand for 40 years. He didn't know what they were until I told him that it was the beginning indications of Dupuytren's. The nodules did not progress during the 40 years and never caused a problem. He never had any signs of contraction. He is now 93 years old and the nodules are the same as when he was about 50 years old. I have several friends who have Dupuytren's that have stopped progressing for many years. If the impression is left that everyone with the early signs of Dupuytren's should seek RT, I think it is just feeding/over-reacting to an unnecessary mild hysteria.

02/16/11 18:12
flojo 
Re: Dupuytrens RT in the USA

Hi Callie,

You have a point. I think we all have to watch what happens and try to determine what our DD is doing.

My DD didn't appear (that I was aware of) until I was 69 years old. Contracture was occurring across my palm from thumb to little finger and nodules were appearing. I had NA done first to release the contracture so that my hand would lie flat. Nodules were appearing, a tingly/crawly/itchy feeling was almost constantly in my palm. By the time I went for RT 5 months later, there were nodules in every quadrant of my palm. Dr. T won't do RT unless Dupuytren's is "active". My symptoms were considered active. After the first week of RT, the itchy, crawly feeling went away. It looks like the timing was good for mine.

I agree that just because something shows up to diagnose it as DD doesn't mean that it is active enough for RT. According to Dr. T, if it isn't active, it won't be effective. I assume that other radiologists would ensure that it is active before doing RT, but I don't recall any others having posted anything about that.

Wish my disease had been the dormant type.

02/16/11 20:02
lauriw 
Re: Dupuytrens RT in the USA

Callie,
I hear what you are saying, but I believe that most people that are on websites like this have active Duputrens. Mine was diagnosed last spring and I have nodules under every finger in both hands, cords in both hands, some very large. I would be thrilled to have just a couple of bumps to watch, but I can feel this stuff and it has changed in even the last 2 weeks. When you see growth like that you need to come out of denial, like I was in the beginning, and understand that there is a very good change that you are going to progress to contracture. I have no doubt that I will and if I get to that stage the RT will not be nearly as effective, so I do have to act now.
I am still hopiing that someone out there can help me with the insurance questions that I have. Anyone been treated in the states and had it covered by Wellmark Blue Cross Blue Sheild?
LauriW

02/16/11 20:59
LubaM. 
Re: Dupuytrens RT in the USA

callie:
I think that we could be over-doing this preventative care for Dupuytren's. My father had/has nodules in his hand for 40 years. He didn't know what they were until I told him that it was the beginning indications of Dupuytren's. The nodules did not progress during the 40 years and never caused a problem. He never had any signs of contraction. He is now 93 years old and the nodules are the same as when he was about 50 years old. I have several friends who have Dupuytren's that have stopped progressing for many years. If the impression is left that everyone with the early signs of Dupuytren's should seek RT, I think it is just feeding/over-reacting to an unnecessary mild hysteria.
Callie,
Everyone is different and its great that your father had/has DD 40 yrs. without causing problems, i.e. contraction. However saying that seeking RT in the hopes of stopping progession feeds to "unnecessary mild hysteria" is a bit of a harsh statement.

My personal case is such, that in my right hand I had initially nodules and dimples on my palm that eventually lead to a severe contracture of the small finger and progressed to a badly bent PIP joint, complicated by a boutonierre contracture in the DIP joint. It all started about 10-12 years ago, and back then I had no knowledge whatsoever of RT and was not involved in this forum. Had I known then about it, I might have been able to prevent the progression in my right hand small finger. I've had two NA's on that finger and it is still contracted as before.

When my left hand started to develop nodules, dimples and showed signs of "active" disease.... since there was constant itchy/crawly/burning sensation...I opted to have RT in 2009 to stop the progression before any signs of contracture. A hard lesson I had learned from my right hand....Having the options because of the information available through this forum has been wonderful for me and many who seek out this treatment.

Should everyone with the early signs of Dupuytren's seek RT? it is very personal.... don't become hysterical... but make your own choice.... the information of this forum gives you that possibility....

02/16/11 22:21
Issleib 

Moderator

Re: Dupuytrens RT in the USA

lauriw:
Lori,
Hi, I am glad that you found a doctor in North Carolina that you like. I am in Iowa and have several nodules and cords in both of my hands but do not have contracture yet so I know that I am still in the early stage for RT. I am trying to get insurance approval and they are dragging their feet. I have Wellmark Blue Cross Blue Shield and am wondering if anyone has Blue Cross in their state that has paid for the RT. Can anyone help me with this? That would be helpful if they deny my therapy and I have to appeal.
thanks, Lauri
Blue Cross Blue Shield of Michigan paid for mine

02/16/11 22:26
callie 
Re: Dupuytrens RT in the USA

LubaM.

The sentence was "If the impression is left that everyone with the early signs of Dupuytren's should seek RT, I think it is just feeding/over-reacting to an unnecessary mild hysteria."

That is different than how you paraphrased what I stated. Of course everyone is different and choices have to be made. Most importantly is that people have to observe their progression and act accordingly. If the Dupuytren's is not progressing there is not the urgency for for RT, or any other procedure.

02/16/11 23:38
lori 
Re: Dupuytrens RT in the USA

Callie,

I agree with you about it being treated with RT only if it is active and waiting and watching if it is not active. Unfortunately mine was aggressive. I would have loved for it to just have stopped and stayed as a nodule for years. Mine went from a sore spot on my palm to a cord in less than 6 months. I know that if a nodule pops up it will be hard for me to take the wait and see attitude, because of how quickly it moved last time. I will not treat it unless it is active and I will document the progression like I did last time so that I can see if it changes.

Good question Flora as to weither the doctors are determining if it is active or not, I guess only each person can tell and the doctors would have to trust us to know. I know when I saw Dr. Crimaldi he asked about progression and how quickly it was occuring before he treated me.

Lauriw,

BCBS of NC paid for my RT. All I paid for was the co-pays and an MRI. I did not have any problems getting approval. If you need the list of CPT codes and costs back from 2009, email me or let me know and I will re-post that thread. I know others with BCBS have had their RT paid for. Hopefully you will not have any problems. Has your treatment center or wherever you are thnking of having your RT done asked your insurance about cost and approval?


Lori

I also think people are confusing us (Lori with Lauri). I received an email that I believe should have gone to you.

Edited 02/16/11 23:41

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