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10/15/2017 03:03
psweang 
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10/15/2017 03:03
psweang
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New to site in Colorado
Hi all.
Dupuytren's is a terrible debilitating affliction that's unfortunately for me, has occupied most of my time due to treatments and surgeries for the last two years.
According to not one but, my 3 hand specialists, I have the most aggressive form of the disease they'd seen.
My Father had the disease and surgery in 2003 at age 64 and has since passed away. ( not from DC )
My youngest son, 28, has already developed nodules in the palm. Hopefully he won't have a progressive form of DC since he writes and produces music and for his job he's a floral manager for a major grocery chain. Less chance of it progressing due to him not "abusing" his hands as I and my Dad did through our lives and careers.
I had collagenase injection with "manipulation" in 2015 with zero affect. Recently I had surgery (open palm and finger surgery) and 2 weeks ago the amputation of my rt small finger because of the disease contracting the finger across and in front of my ring and middle fingers.
I hope you all have had better experiences than I.
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10/15/2017 06:58
wach  Administrator
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10/15/2017 06:58
wach Administrator
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Re: New to site in Colorado
Hello psweang and welcome to our forum! I am very sorry to hear about your very aggressive Dupuytren's. Have you ever considered radiotherapy http://www.dupuytren-online.info/radiation_therapy.html ? It helped other patients to slow down their Dupuytren's and made it better manageble. With very aggressive DD surgery might trigger new nodules elsewhere and you might get into cycle of new contracture-new surgery-new contracture etc. Surgeons usually won't suggest radiotherapy because it's not their area of expertise but it worked well for me and some other members of this forum. Might be worth a try.
Wolfgang
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10/16/2017 01:08
psweang
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10/16/2017 01:08
psweang
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Re: New to site in Colorado
My surgeon actually just 2 days ago suggested radiotherapy for possibly both hands.
I was under the impression that radiation treatment was only beneficial for first stage DD. For shrinking the nodules and some cording that are only in the palm. From what I've read, once the cord progresses up the finger the treatment is minimally effective. Is this not the case?
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10/16/2017 05:37
spanishbuddha Administrator
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10/16/2017 05:37
spanishbuddha Administrator
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Re: New to site in Colorado
psweang:
My surgeon actually just 2 days ago suggested radiotherapy for possibly both hands.
I was under the impression that radiation treatment was only beneficial for first stage DD. For shrinking the nodules and some cording that are only in the palm. From what I've read, once the cord progresses up the finger the treatment is minimally effective. Is this not the case?
RT is indeed usually recommended for early stages of DD. However since it is effective during active stages of the condition, it can also be used after NA or collagenase or surgery, if there are new or ongoing signs of activity that might lead to recurrence (of nodules or contracture).
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