| General and mental advice needed: 40y female newly diagnosed |
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03/07/2018 13:24
wach  Administrator
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03/07/2018 13:24
wach Administrator
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Dutch Dupuytren Society
I don't know whether it was already mentioned to you but recently a Dutch Dupuytren Society has been founded https://dupuytren-nederland.nl/ . Maybe worth a try talking to them? Maybe they have advice on horpitals and insurance coverage.
Wolfgang
Edited 03/07/18 15:25
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03/07/2018 13:30
Stefan_K. 
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03/07/2018 13:30
Stefan_K.
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Re: General and mental advice needed: 40y female newly diagnosed
Hi Jaekry,
I have sent you some details by personal message through the site.
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03/07/2018 15:37
Jaekry 
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03/07/2018 15:37
Jaekry
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Re: General and mental advice needed: 40y female newly diagnosed
About dhr Seegenschiedt: as it happens I just emailed him. So very eager to hear from him.
Meanwhile
While googling around I've found that -apparently- my current surgeon for my wrist are also specialists in Dupuytren in the Netherlands as well as my fysiotherapist. My current surgeon is the one I wrote about and is not supporting RT.
So it feels hard to go against her advice.
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03/08/2018 18:57
Jaekry
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03/08/2018 18:57
Jaekry
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Re: General and mental advice needed: 40y female newly diagnosed
Last night I got a response from prof S (now I understand why everyone abbreviates that name, lol) with detailed info.
I returned briefly about inquiring waiting times. This afternoon I got the opportunity to make an appointment.
For tomorrow morning. Ay.
So kind of nervous now, had to drop work and it's going at the light of speed. Just have to keep focus on my plan: information.
(and prepare myself for the advice to start treatment, because a radiotherapist will advice RT while a surgeon will advise surgery (in the future).
Also last couple of days my right hand and even arm (last hours up to armpit) hurts and burns. Taking ibuprofen for relief. I have no idea why it hurts so much or whats going on. Perhaps psychosomatic.
Aaaaah.
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03/08/2018 19:10
Stefan_K.
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03/08/2018 19:10
Stefan_K.
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Re: General and mental advice needed: 40y female newly diagnosed
When I first consulted him for my left hand I was told to wait, but fortunately my plane ticket (to Hamburg at the time) wasn't "wasted" as he detected small nodules in the right hand which were in the right stage for RT and with treatment shrunk or disappeared altogether.
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03/09/2018 09:23
Jaekry
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03/09/2018 09:23
Jaekry
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Re: General and mental advice needed: 40y female newly diagnosed
Currently sitting with a coffee inn the sun. Looking at my hand with several lines and dots.
Just had my first consult with prof Seegenschmiedt.
I have three nodules, three cords, no contraction, but decreased overflexion.
My feet are fine (as I expected) so is my left hand.
I advised to wait and see for another 6 to 12 months and if it progresses then do RT.
I'm currently at a "very" early stage, so it will be a very nice baseline, should it progress.
To be honest, I don't expect it takes 6-12 months to reassess this, more like 3-6 months. But I've never hoped to be wrong so bad. 😌
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03/09/2018 09:26
Jaekry
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03/09/2018 09:26
Jaekry
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Re: General and mental advice needed: 40y female newly diagnosed
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03/09/2018 10:48
Stefan_K.
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03/09/2018 10:48
Stefan_K.
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Re: General and mental advice needed: 40y female newly diagnosed
Nice drawing. Now you know what to keep an eye on. Good to hear there was no rush to treatment. Has this diagnosis given you some peace of mind?
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03/10/2018 06:20
spanishbuddha Administrator
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03/10/2018 06:20
spanishbuddha Administrator
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Re: General and mental advice needed: 40y female newly diagnosed
You have a good baseline. Start a photo log or journal, with notes of symptoms, perhaps monthly photos, and that way you will know objectively if there is progression and the rate of progression, rather than having your worries play tricks on your mind. Then carry on as normal and try and forget about it apart from protecting your hands a bit more than you used to when handling things, doing sports, etc.
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03/11/2018 05:52
Jaekry
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03/11/2018 05:52
Jaekry
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Re: General and mental advice needed: 40y female newly diagnosed
Stefan_K.:
Nice drawing. Now you know what to keep an eye on. Good to hear there was no rush to treatment. Has this diagnosis given you some peace of mind?
I know I won't have some time... and a small piece of peace.
I was baffled that he found a cord in the base/web of my thumb.
And that my thumb cant move as wide as it should. (60 vs 110 degrees).
And I'm going to make a very gentle prediction:
I'm going to develop one below my pinky. I'm think I'm seeing a string developing.
And off course pain, tingles and stabs are still there, so it's hard to ignore and put it to rest.
Am talking paracetamol now, thats takes a bit of the sharp edges off.
But even strechting my palm for the pinky photo...
Edited 03/11/18 08:25
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