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Went to hand surgeon, left feeling confused
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09/12/2013 17:17
Clm 
09/12/2013 17:17
Clm 
Went to hand surgeon, left feeling confused

I saw a surgeon who is an expert in Dupuytren's to see whether I had DD and, if so, to ask him to outline any nodules/cords for me to show a radiologist who treats early-stage disease.

At first, the surgeon said my knuckle pads could be DD or cysts, but after seeing my Ledderhose, he said they were definitely Garrod's pads. He said the small lump on my finger could also be DD or a cyst, but because it was hard, only an MRI could distinguish between them and the bump was currently too small to justify MRI. He did say it was a common location for a DD nodule.

He could not feel any nodules or cords, which surprised me because I definitely feel thickness in my left palm, and raised areas are visible under certain lighting (but not when I stretch my hand flat--then you see nothing; if I make a claw, they really pop, but maybe everyone's hands do that). He said the thick line was the fascia, which was probably more prominent in my left hand because I am left-handed.

As for the hand pain, he located the exact spot and said it was unlikely related to DD. X-ray results were normal, and he suggested it was tendonitis.

In the end, he said I had DD but until I could not flatten my hand against a table or had a contracture or a larger nodule or more nodules, little could be done. He said the Garrod's pads would likely grow back if removed. He said given my age, my DD was likely aggressive and I should watch closely.

The surgeon told me radiotherapy was only done in Germany and was surprised when I mentioned a radiologist in NJ who does it. But without palpable lumps and cords, I expect he won't be able to do anything.

Part of me wants a second opinion, but this surgeon is an expert, so he is probably right. I'm just afraid of missing the window where radiotherapy is most effective; I don't want to wait for a contracture, I want to prevent one.

For those who have/had contractures, do the lumps/cords get more prominent beforehand so that I'll have time to get radiotherapy?

Also, my knuckle pads started in 2008; if the only progression I've had since is more knuckle pads and one possible nodule, would that mean I am having slow progression? (My foot lumps were several years before the knuckles.)

IMAGES for anyone interested (though I forgot to put up my right knuckles):
http://www.flickr.com/photos/101552940@N03/with/9715883004/

Edited 09/12/13 20:34

09/12/2013 17:51
callie 
09/12/2013 17:51
callie 
Re: Went to hand surgeon, left feeling confused

I think you got pretty good advice. It is probably too early to consider RT. Observance on your part will be best. You will have a good idea if the nodule starts growing. It might not ever happen. Keep watching/feeling for any formation of a cord.

09/12/2013 21:46
JohnG 
09/12/2013 21:46
JohnG 
Re: Went to hand surgeon, left feeling confused

It's no surprise that a hand surgeon is not informed about radiation therapy. You might be the first of his patients to mention it.

The advice to do nothing until you can't flatten your hand is probably meant to apply to surgery. I'm not sure if that same test is applicable for radiation therapy. In fact the best outcomes for radiation therapy are for patients who do not yet have contraction. I think that identifying an 'active' state for the disease is the more timely indicator for radiation therapy.

I don't think there's a critical time for having radiation therapy. A few months probably makes no difference.

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