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Will RT help me? One doc said no, one said yes
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07/25/19 23:28
Adriennels 
07/25/19 23:28
Adriennels 
Will RT help me? One doc said no, one said yes

I have bilateral Dupuytren's and have not had anything done to either hand. I had nodules come and go in my palm for many years, but don't really have any big cords or nodules in my palms now. My pinky finger on my left hand started contracting 3 years ago. It is still not very bad (I can push it flat), but the right hand has flared up in the last 1.5 years and two fingers are involved (pinky and middle), but not too contracted - just past the point of being able to push two of them flat. (One doctor has recommended Xiaflex and another doctor didn't, but I will post that separately.

I consulted two doctors for radiotherapy and one doctor said I was not a good candidate and the other doctor did (I'm still waiting to hear back from them as to why). Here is what doctor who told me that I was not a good candidate said:
- he likes to treat the palms, not the fingers. Fingers aren’t thick enough and have lots of nerves and other things. Palms have more skin.
- my palms don’t really have cords or too many nodules, which is what they they would treat
- the nodules that I do have are not under contracted fingers, so I shouldn’t bother with them unless those fingers start to contract - my nodules in the palm are under the ring fingers (which are not that contracted)
- he says my pinky activity is all in the fingers and not in the palm
- radiotherapy can make things more comfortable and soften nodules - if I’m not having problems, then I shouldn’t worry about it
- he does see that it helps in the short term, especially with softening, but doesn’t follow patients long term
- treatment is 5 days M-F
- can have 2 courses of radiotherapy per area (I.e. hand) in a lifetime, so don’t want to do treatment too early, but don’t want to do it too late either; in Germany they do a 5 day course, then a follow up course a month or two later - doctor doesn’t see the value in this as it uses up a treatment option for the future, so he only does one course

Any comments on this?

Thanks,
Adrienne Smith
Portola Valley, CA

07/26/19 00:13
Stefan_K. 
07/26/19 00:13
Stefan_K. 

Re: Will RT help me? One doc said no, one said yes

Hi Adrienne.

Perhaps Prof. Seegenschmiedt could best respond to the questions about the merit of the second series, and if and how he would treat you based on your description, if he sees your post. But I wonder how your fingers contract without significant cords.

If you don't get RT, you may want to use comfortable splint gloves at night, as I do, to prevent the hands from making a fist in your sleep, thereby favoring contraction. There are differing opinions about their effectiveness for prevention but personally, based on my own experience I swear by them and consider there is nothing to lose if you find the kind that doesn't bother you.

Stef

[57, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]

07/26/19 00:15
Prof.Seegenschmiedt 
07/26/19 00:15
Prof.Seegenschmiedt 

Re: Will RT help me? One doc said no, one said yes

Dear Adriennels,

To give you a meaningful and valuable advice, one has to see and eventually inspect your hand palms including the fingers on photographs with high resolution; however, that is only one side of the coin ! On the other side you need an experienced physician who has long-term experience in palpating those affected hands and fingers to detect nodules and cords which might not be visible on the surface of your hand palms. A good example for the patient's perspective and the physician's findings is shown on this forum: https://www.dupuytren-online.info/images...mage001_000.jpg

In addition, the individual hand function has to be examined, including the spreading ability of your fingers and the actual ability to stretch your fingers (not with pushing them on the table by means of your body weight or by the other hand ...).

All in all, radiation therapy may be too late for you if the flexion deformity of one of your digits has already reached an angulation of 30° or more.

With regard to the proposed radiation dose concepts, it appears not very scientific and prudent to irradiate only with ONE COURSE of radiotherapy. To which total dose shall the radiation therapy be prescribed - five or ten treatments ??

Long-term follow-up is an essential key point both for the patient and the doctor, as only these constant recalls make the physician more aware of the appropriately chosen treatment and the possible successes and failures and it makes the patient more conscious about the fact that the doctor is actually interested in the long-term outcome and knows the own results..

To Treat or Not to Treat ... That is the question, but also whom you trust to be treated and followed for the upcoming years. https://www.dupuytren-online.info/Forum_...1559373063.html

Wish you all the best with your decisions and future treatments, Prof. Seegenschmiedt

...............................................................................................................................................

P.S. If you want to read more about radiotherapy considerations you may want to go to this link:
https://www.dupuytren-online.info/Forum_....Seegenschmiedt

Edited 07/26/19 00:23

07/28/19 23:01
Adriennels 
07/28/19 23:01
Adriennels 
Re: Will RT help me? One doc said no, one said yes

"All in all, radiation therapy may be too late for you if the flexion deformity of one of your digits has already reached an angulation of 30° or more."

Thank you very much for the response. The radiologist has done RT for Dupuytren's for a while (5 years?) and seemed to be competent, but did not take high res photos. I'm not really representing his expertise here very well. He did do a through examination of my hands, but did not My hand doctor was the one who told me that he uses (as a rule of thumb) the idea of being able to push the digit straight or not. Anyways, one of my pinky fingers is close to 30°, while the middle finger is slightly less and the other pinky significantly less. The other fingers are pretty straight. Do you think it is too late for the other fingers?

Thanks,
Adrienne

07/29/19 01:31
Prof.Seegenschmiedt 
07/29/19 01:31
Prof.Seegenschmiedt 

PUT YOUR HAND THROUGH THE MAGIC WALL ...

Dear Adrienne ...

If possible, take photographs from both hand palms from the top and from the side perspectives, which allows us to judge the flexion angles of your fingers and the possible distribution of your nodules ... (let somebody help you taking the pictures against a neutral background, e.g. a white wallpaper). Under certain circumstances - depending on the speed of the disease development and the remaining flexibility of the hand and finger joints - I have also treated patients with up to 30° flexion deformity

The best option would be to put your hand through the magic wall, which would allow me to palpate and examine your hand with my accumulated experience to provide a better advice to you.

With best regards. Prof. Seegenschmiedt

Edited 07/29/19 01:32

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Hand through Magic Wall .....jpg Hand through Magic Wall .....jpg (16x)

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08/02/19 03:34
Adriennels 
08/02/19 03:34
Adriennels 
Re: Will RT help me? One doc said no, one said yes

Prof. Seegenschmiedt,

Thanks for your advice. I took some pictures and have attached them. I would be more than happy to do the magic wall. I think I have an idea of what it does - it sounds very cool. Let me know what other information you need for that.

My left pinky started contracting about 2.5 years ago, but hasn't gotten much worse. My right pinky and middle finger have started contracting in the last 1.5 years and the doctor is suggesting Xiaflex for those two fingers. Surprisingly, I can feel more cords in my left hand than in my right hand.

Also, because everyone asks, my right ring finger got caught in a car door when I was 5 and the tip got amputated.

Thanks,
Adrienne

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Right hand side.jpg Right hand side.jpg (10x)

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Right hand top.jpg Right hand top.jpg (6x)

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Right hand side3.jpg Right hand side3.jpg (6x)

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Right hand side2.jpg Right hand side2.jpg (4x)

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Right Hand palm.jpg Right Hand palm.jpg (12x)

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Left hand side.jpg Left hand side.jpg (3x)

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Left hand side2.jpg Left hand side2.jpg (3x)

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Left hand side3.jpg Left hand side3.jpg (3x)

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Left Hand palm.jpg Left Hand palm.jpg (9x)

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significantly   treatment   fingers   contracting   effectiveness   comfortable   contracted   representing   perspectives   experience   radiation   Seegenschmiedt   circumstances   nodules   Adrienne   appropriately   Surprisingly   dupuytren-online   radiotherapy   considerations