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what would you do?
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08/22/2013 08:21
lina 
08/22/2013 08:21
lina 
what would you do?

Hi,

I posted some questions on this forum earlier and have found a lot of information on this site/forum, thanks for that.
I would like your advice (again) as I am struggling to make a desicion...

My story so far:

I was diagnosed with Dupuytren's (both hands) and Ledderhose (left foot) by Prof. Ilse Degreef from the University of Leuven (Belgium) earlier this year (end of april). At that moment there was no contraction or (visible) cords yet. Nodules yes. Prof Degreef told me to wait until contraction and then make an appointment for injections.

Now it's the end of august and in the last few days my hands are deteriorating. My pinkie & ring finger on the left hand are starting to contract (especially pinkie), although I can still fully stretch with a little effort. My right hand is acting funny and hurts (especially my index finger) and feels like it's going the same direction as the left one. I find it harder to tie my shoelaces or do the washing up and things slip out of my hands easier. I make more typing mistakes than usual. In both hands I can see cords now, although they are still quite faint. (By the way, all fingers are really stiff in the mornings, and my left pinkie is jerky, which gets better after a few minutes)

As I am 35 years old, have a family history of Dupuytren's, have both hands affected and my foot as well, I fear it might be an aggressive form. Prof Degreef told me she did not trust radiotherapy ('there's something fishy about it', she said).
But I read a lot of positive stories on the internet. As I live in Belgium, I would have to go to either Germany or the Netherlands. I am also worried about the money, because I don't have a lot of it, and my belgian insurance won't cover, unless I get some specialist to convince them.

! EXTRA NOTE: I just spoke to Dr Schmeets from the Catharina Hospital in Eindhoven, the Netherlands on the telephone; she was very helpful but told me they have made an agreement NOT to give radiotherapy to patients with Dup/Ledderhose under 50 years of age!!!!!!

I have to say I am not all that keen on radiotherapy myself. I really, really would rather not. But I do get panicky moments on which I think: AAAAAAARgh, I have to act NOW, or else I might get crippled for the rest of my life!
Or should I just trust Prof Degreef and go for injections?

What would you do?

Edited 08/22/13 12:02

08/22/2013 09:03
wach 

Administrator

08/22/2013 09:03
wach 

Administrator

Re: what would you do?

Hi Lina,

I myself had radiotherapy at the age of 35 with excellent results. Unfortunately, the results are the better the earlier the nodules get irradiated. Therefore waiting is not always the best advice if you are considering radiotherapy.

If you need to go abroad to get radiotherapy then Germany is probably the better choice because there is more experience with RT of Dupuytren's. The pricing varies in Germany, depending on the clinic and the equipment. Would Hamburg be too far for you? Prof. Seegenschmiedt has a lot of experience with treating Dupuytren's and Ledderhose. As far as I know he is also treating in Essen. You might ask him where Treatment is more versatile because you have to pay out of your pocket. I am sure he will understand that. You find his address on http://www.dupuytren-online.info/radiotherapy_clinics.html and more German addresses on http://www.dupuytren-online.de/strahlent...e_adressen.html, including his Essen address.

Wolfgang

08/22/2013 09:16
lina 
08/22/2013 09:16
lina 
Re: what would you do?

Thanks Wolfgang,

I've just sent an e-mail to the clinic in Essen (this is a lot closer to me than Hamburg). So hopefully I'll get an answer soon and maybe I can make an appointment with them. I have to say though, that Dr Schmeets scared me even more by saying they don't treat patients under 50 years of age. I'd rather have contracted fingers than a tumor in 10 years time...I also read that radiotherapy can cause collateral damage to the rest of your hands. Have you noticed any of this?

Lina

08/22/2013 10:39
wach 

Administrator

08/22/2013 10:39
wach 

Administrator

Re: what would you do?

My finger was treated 30 years ago and is still fine. No side effects except maybe a littel dryness of the skin but that's difficult to tell after 30 years. The nodule went away and never came back. To my opinion radiotherapy works very well on fresh nodules and still works, not so well, when cords already developed.

I would suggest to contact Prof. Seegenschmiedt directly and ask his advice. His email address is on our website. That's better than contacting the clinic where somebody else might respond.

Wolfgang

08/23/2013 12:11
lina 
08/23/2013 12:11
lina 
Re: what would you do?

Thanks Wolfgang,

I have made an appointment with Prof Seegenschmiedt for the 14th of september in Essen.

Lina.

08/23/2013 19:21
Jolene 
08/23/2013 19:21
Jolene 
Re: what would you do?

lina:
Thanks Wolfgang,

I have made an appointment with Prof Seegenschmiedt for the 14th of september in Essen.

Lina.

That is great news regarding your appointment Lina,
Personally I would not be afraid of radiation.

I had radiation on my foot LD. The results have been success all the way. I am 5 weeks out from the 1st round. The 2nd round of RT is Sept 9th. Before radiation I walked on the side of the foot. Limped a lot. Was also in pain. The nodules are still prominently there and the fascia still protrudes. But I walk with no limp. I walk with no pain. I walk normal.

During this break between RT I have develop DD in both hands. They are causing me pain. I feel the cords underneath yet you cannot visibly see them. The nodules are small. My concern is the hand surgeon I have appt. with on Weds will not be able to detect this. Or if she does will say I need to wait until it is worse.

From everything I have read it appears that the hands are trickier to treat.
Unfortunately for me I live in the USA. Not many doctors believe in radiation in the USA. I had to fly to another state for treatment on the foot. I am financially embarrassed and have no clue how I can pay for this treatment.

I only WISH I could go to Prof Seegenschmiedt. I want the best. It seems as though he is it. Best of luck to you

08/25/2013 18:16
lina 
08/25/2013 18:16
lina 
Re: what would you do?

Thanks Jolene, and good luck to you. Hopefully you will find a solution soon!

08/25/2013 18:21
lina 
08/25/2013 18:21
lina 
Re: what would you do?

wach:
My finger was treated 30 years ago and is still fine. No side effects except maybe a littel dryness of the skin but that's difficult to tell after 30 years. The nodule went away and never came back. To my opinion radiotherapy works very well on fresh nodules and still works, not so well, when cords already developed.

I would suggest to contact Prof. Seegenschmiedt directly and ask his advice. His email address is on our website. That's better than contacting the clinic where somebody else might respond.

Wolfgang

Hi Wolfgang,

So you got RT in the early eighties? It must have been quite revolutionary back then! Did you have RT on both hands?
And are your hands still fine now? How many times did you have RT?

Thanks for you reply!

Lina

08/26/2013 02:11
stephenp 
08/26/2013 02:11
stephenp 
Re: what would you do?

I also thought that RT in younger people be of higher risk. However when one adds up lifetime radiation exposure, RT only marginally adds to the cumulative total.

In discussing this with my doctor, his comment was, where someone of 35 depends on their hands to make a living (we were talking about a dentist), RT is clearly a good option as there is a good chance of retaining full function if treated early enough.

RT of both hands worked for me.

08/26/2013 14:11
wach 

Administrator

08/26/2013 14:11
wach 

Administrator

Re: what would you do?

I had RT 3x at various areas of my both hands. Twice it worked excellently, once with mediocre success (probably too late there).

Wolfgang

lina:
Hi Wolfgang,

So you got RT in the early eighties? It must have been quite revolutionary back then! Did you have RT on both hands?
And are your hands still fine now? How many times did you have RT?

Thanks for you reply!

Lina

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