| DD diagnosis - where to turn next |
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03/02/2016 08:00
mellow 
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03/02/2016 08:00
mellow
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DD diagnosis - where to turn next
Hello all,
Apologies for setting up a new thread but I wasn't sure where to post this. I am a 31 year old Irish male and I have recently being diagnosed with DD. It started when I fractured my finger playing sport about 5 years ago. A nodule developed on the palm of my hand under the affected finger after the fracture healed. I asked some healthcare professionals about it at the time but they didn't know what it was and said it looked harmless. However, I recently went for a routine health check-up and the doctor identified it as a symptom of DD immediately. I was told to monitor it . This was 5 years after the nodule originally formed - there is no sign of a contracture yet. More recently I fractured the same finger again playing sport. It now appears that another small nodule is forming just under the original nodule - this one is a little more tender than the original nodule. Again, I have no contracture as yet. Nonetheless, after reading people's experiences on this forum I felt I needed to take action so I have made an appointment with a hand specialist in Dublin (one of the doctors mentioned on this forum). However, I suspect he may well tell me to come back when I have a contracture and he can conduct surgery then. However, given the early onset of the condition I am quite worried and anxious about the future so I'm not sure I want to just "see how it goes". I have a number of thoughts going around in my head, for example, am I a suitable candidate for RT and if so should I go to Prof S in Germany or try to get it performed in Ireland? Is NA an option at this point and again should I go to the doctor in France or try to get it performed in Ireland? Ordinarily I would prefer getting a procedure done in my home country but given the apparent lack of experience of the condition in Ireland I'm wondering if it is better to go straight to the experts in Germany/France? Or should I just wait and see what happens since the original nodule has stayed the same since its appearance 5 years ago and maybe a contracture will not develop?
I appreciate that people can't tell me what to do but I would be really interested in hearing people's thoughts and/or opinions. This forum has really helped me in both understanding the condition and learning of patient experiences. Thanks so much in advance.
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03/02/2016 08:32
Stefan_K. 
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03/02/2016 08:32
Stefan_K.
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Re: DD diagnosis - where to turn next
Hi mellow, welcome. Sorry to hear you are affected at a relatively young age (compared with the average onset at around 46 for men according to one study), but it is good to see you made yourself knowledgeable while you still have various treatment options.
My view, as a simple patient having been through a NA/PNF procedure and Radiation Therapy on my right hand, and a small, untreated nodule on my left hand, is that with basically just one nodule and no finger to straighten it is too early for any treatment, possibly even for RT for shrinking a nodule which is relatively small and barely growing (if I understood correctly). I certainly hope the hand specialist will not suggest surgery, but if he does at least you know where not to go back to. If I was you I'd contact the Consultant Radiation Oncologist in Galway listed at http://www.dupuytren-online.info/radiotherapy_clinics.html, offer to send a photo of your hand, see what he says. In the case of my left hand with just one small nodule and a first small cord Prof. S has recommended to wait, so logically in your case at age 31 I would expect a radiation doctor to prefer to wait until a larger area is to be treated or the nodules become more active.
If you can switch to a sport which is easier on your fingers, that would probably help keep trouble in check. I know, easier said than done, just a thought. Good luck, keep us posted.
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03/02/2016 17:02
spanishbuddha  Administrator
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03/02/2016 17:02
spanishbuddha Administrator
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Re: DD diagnosis - where to turn next
Welcome to the forum mellow.
I think I would first of all want to be sure about the diagnosis. Who made that? I think you need an experienced hand doctor, usually a surgeon, to be able to differentiate between a DD nodule and other lumps in the hand especially after trauma. Example, I have DD but one of my nodules, is not in fact a nodule at all. Sure feels like a nodule to me, except under specific examination.
Stefan offers good advice. Let's say it is DD and now after this second trauma it has kicked off again. Maybe just like before it will settle down, not go away, but stabilise. In such a case, which is what happens for most people, there is no treatment to be done, not even RT despite your possible perception the time could be right because the DD is at an early phase. In Germany ProfS does not always treat when patients present, but tells some to effectively 'wait and see', not for a contracture but for more symptoms and progression of the disease.
My suggestion is usually to keep a record of symptoms, with photos, do some research, just as you are in the meantime, and look after your hands.
Best wishes
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03/07/2016 07:57
mellow
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03/07/2016 07:57
mellow
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Re: DD diagnosis - where to turn next
Thank you both for your thoughts. I contacted Prof S in Germany and he indicated that my photos demonstrated a treatable early stage DD. However, I have decided to have the diagnosis confirmed by a hand specialist first (I have an appointment next month) and will take it from there.
A big nod to this website - the literature and information available is fantastic and set out in a very usable way. It has really helped me educate myself on the condition and treatment options.
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