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05/16/2016 13:29
Edd74 
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05/16/2016 13:29
Edd74
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Seeking Advice
Hey everyone,
I've written here before seeking advice just still trying to figure things out. Quick recap: Im a 35 year old male with DD in my left hand (thinking stuff is now happening to my right). I have an RO willing to do the RT but with no experience with DD we are kinda in the blind. Also I don't have the best insurance and the estimate for the one hand for treatments will cost me around $5,000. for both it would be $6,500. But He nor I dont know if its time to treat my other hand yet. ( or even the one with the nodules) So for that kinda money I'm thinking it would be better for me to go to Germany and meet with Prof. Seegenschmiedt. What do you all think? Also does anyone know if there a place in the states that will do the RT for a reasonable cash price? Or do yall know of anyone here in the states with the level of experience Prof. S has? Thanks in advance for any advice given. Ed.
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05/16/2016 14:04
Stefan_K. 
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05/16/2016 14:04
Stefan_K.
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Re: Seeking Advice
Edd74:
Hey everyone,
I've written here before seeking advice just still trying to figure things out. Quick recap: Im a 35 year old male with DD in my left hand (thinking stuff is now happening to my right). I have an RO willing to do the RT but with no experience with DD we are kinda in the blind. Also I don't have the best insurance and the estimate for the one hand for treatments will cost me around $5,000. for both it would be $6,500. But He nor I dont know if its time to treat my other hand yet. ( or even the one with the nodules) So for that kinda money I'm thinking it would be better for me to go to Germany and meet with Prof. Seegenschmiedt. What do you all think? Also does anyone know if there a place in the states that will do the RT for a reasonable cash price? Or do yall know of anyone here in the states with the level of experience Prof. S has? Thanks in advance for any advice given. Ed.
Hi Edd. Rather than spend that kind of money on treatment by someone without a minimum of experience it definitely seems to make sense to pay less for being treated by an expert. But first of all it needs to be determined in what state your hands are in. You can email photos to Prof. Seegenschmiedt for an opinion, but there's also help available closer. I let those with actual experience in your location reply to that part of your question, but you may want to be more specific.
Stef
[54 year-old male, DD diagnosis 2006, RH contracture and NA/PNF 2014, RT 2015, wearing night splint glove]
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05/16/2016 14:47
Nancy2016
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05/16/2016 14:47
Nancy2016
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Re: Seeking Advice
I am getting my right hand treated (radiation) at the Ackerman Oncology Center in Jacksonville, Florida. This website was the information I used to navigate my way into making decisions. There are places throughout the United States- go to the link under treatment then clinic in this website to see clinics in the United States.
I knew I needed a firm diagnosis for my insurance, so I went to a hand surgeon under my insurance for diagnosis; but it was my dermatologist who told me that it was dupuytern. Personally I would go to someone who has had experience with treating dupuytern and knows the research that has done so far about the condition.
If your insurance does not pay a substantial amount, you might be able to negotiate a lower price for treatment, for payment in cash. Just a thought.
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05/16/2016 17:48
Edd74
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05/16/2016 17:48
Edd74
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Re: Seeking Advice
I'm in NC and tried to get an appointment with Dr. Crimadli at SERO. He was the expert in their department but is no longer with them. But they have set me up with another Doctor in their group but does not have the experience he had with DD. So I went to the surgeon who confirmed my DD and ask him to palpate me hands before I get RT. He declined to do so and said at the RO should be the one to do it since they were the one who was doing the treatment. I just want to make sure that I am getting the best possible treatment out there. The nodules in my hand are growing and I can feel more popping up. I know that the disease is active because of the new growth, the itching and pain that they cause. And I think I can feel nodules in my other hand but can't say for sure. Thanks, Ed.
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05/16/2016 19:14
Stefan_K.
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05/16/2016 19:14
Stefan_K.
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Re: Seeking Advice
Cherrise:
If your not wearing a finger type brace at night, I would suggest the Fixxglove.
I may have missed something but I have only read about nodules, no cords, let alone contracture in Edd's hands. If so, what would be the benefit of wearing a splint?
Stef
[54 year-old male, DD diagnosis 2006, RH contracture and NA/PNF 2014, RT 2015, wearing night splint glove]
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05/16/2016 20:13
Cherrise 
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05/16/2016 20:13
Cherrise
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Re: Seeking Advice
Maintenance only for preventative measures.
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05/16/2016 20:21
Stefan_K.
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05/16/2016 20:21
Stefan_K.
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Re: Seeking Advice
Cherrise:
a splint is a good way to prevent contracture .The hands normally at rest while sleeping contract. My doctor recommended it for maintanence for DD.
Cherrise:
Maintenance only for preventative measures.
I understand. You and I had contracture and are wearing a splint glove at night to prevent or slow down renewed contracture after having fingers straightened. But what about someone who doesn't have any cords pulling on the fingers yet? Unless there is some evidence that making a fist or bending fingers during sleep favors the formation of cords my preference would be to enjoy a normal life as long as possible.
Stef
[54 year-old male, DD diagnosis 2006, RH contracture and NA/PNF 2014, RT 2015, wearing night splint glove]
Edited 05/16/16 23:22
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05/17/2016 04:29
wach  Administrator
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05/17/2016 04:29
wach Administrator
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Re: Seeking Advice
From what you are describing Rt might be thre right thing and the right time but I agree with your surgeon that the treating doctor has to decide. If travelling to Hamburg and having it done there is cheaper than having it done in the USA I would go to Hamburg and enjoy the bonus vacation. If SERO is cheaper I would do it there. Irradiating Dupuytren's is not that difficult, the art is to decide where to irradiate and where not. I would expect that at SERO they would irradiate both full hands. Then you can sure to not miss anything but you are also irradiating healthy areas as well. Whether that is better or worse is hard to tell, therefore I personally would go the most economic route.
Wolfgang
Edd74:
I'm in NC and tried to get an appointment with Dr. Crimadli at SERO. He was the expert in their department but is no longer with them. But they have set me up with another Doctor in their group but does not have the experience he had with DD. So I went to the surgeon who confirmed my DD and ask him to palpate me hands before I get RT. He declined to do so and said at the RO should be the one to do it since they were the one who was doing the treatment. I just want to make sure that I am getting the best possible treatment out there. The nodules in my hand are growing and I can feel more popping up. I know that the disease is active because of the new growth, the itching and pain that they cause. And I think I can feel nodules in my other hand but can't say for sure. Thanks, Ed.
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06/30/2016 21:50
onetopmom
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06/30/2016 21:50
onetopmom
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Re: Seeking Advice
Nancy2016:
I am getting my right hand treated (radiation) at the Ackerman Oncology Center in Jacksonville, Florida. This website was the information I used to navigate my way into making decisions. There are places throughout the United States- go to the link under treatment then clinic in this website to see clinics in the United States.
I knew I needed a firm diagnosis for my insurance, so I went to a hand surgeon under my insurance for diagnosis; but it was my dermatologist who told me that it was dupuytern. Personally I would go to someone who has had experience with treating dupuytern and knows the research that has done so far about the condition.
If your insurance does not pay a substantial amount, you might be able to negotiate a lower price for treatment, for payment in cash. Just a thought.
Hello Nancy,
I'm also going to the Ackerman Oncology center on July 5th next week for my MRI and consultation. Then they said a scat and then R/T the next day because I'm traveling like 5 hours from Sarasota Fl. Can you tell me a little about the whole process. Which oncologist did you see? Who are you hand after R/T first round any peeling, burning or blisters?? do you get a lotion to apply after R/T would you recommend this center for R/T for DD. There are a few in Florida like three I think. Any information would be greatly appreciate since I going in a few days. Thank you again for your help and support.
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