I was told by a Doc that Xiaflex and Na were on there way,this was like 1999 or early 2000.He told me that eveyrone was waitin to see how the dd reacted to not being exposed to the oxygen in the operating room during surgery he didnt say why in so my guess is it seems to spread when exposed,in some cases .Thus the skin graft being the best chance of keeping it away the longest by bringing skin from under your arm which has a different make up than palm skin.He was very curious about the needle treatments and not having to open the hand.It comes back no matter what but a least we have options now.

I have to agree with the title of old school. I feel like before long they will do away with surgery all together. I have never had surgery on my hands and i told myself i would never do surgery on my hands. Its okay if other people do it but i feel like it is mutilation on your hands. I know this is a hard word to use but thats what i believe. My question to Wach is are you saying that if you have had radiation done on your hands and at a later date something happens where you might need it again but its to soon to treat it. Will having something like NA cause this disease to wake up and go mad or can you just get a cord done and not worry about it? I fully back RT treatment because it works!!!!!!!!!!

I would say my hands. Because most surgeries don't reactivate unless you have cancer. I could be wrong about some other surgeries but for me i feel like their is no reason for this on your hands except to help to line the pockets of some doctors with green. RT does a great job for this disease. Its been 2 years since i have had RT and everything is good. DD hasn't reactivated on either hand. My right hand was the worst with DD and so my skin is very tight on that hand and i have a large cord down the middle of palm. Rest of my cords are on the small side. I hope this helped with the question you ask because i sometimes will ramble on about this crazy disease.

My suggestion: Can we stop arguing about this same issue over and over?

Callie, I am glad you have had an outcome that you feel so good about. However, there are many of us who are in very different situations and are looking for different answers. If I recall what you said about your history correctly, you have had just one contracture in one finger over a period of many years. If this is the case, you are very fortunate to have had a very limited and non-aggressive form of the disease (at least so far). This may be due to fortunate genes, as I believe you said your father's DD was also not very aggressive.

Those of us with more pervasive and aggressive disease are in a very different situation. I have disease in all 10 fingers and thumbs which developed rapidly (from nothing to more than 15 nodules in 9 fingers in less than 18 months). The RT I received has slowed it down a great deal, and I am planning to use a combination of NA and Xiaflex on an as-needed basis over the years to (hopefully) keep everything functioning. Given the nature of my disease, allowing each of my 10 fingers to become disabled and then having surgery on each is a path that I would not even consider, given any reasonable alternative. This is especially the case as many experts think that the trauma of surgery can trigger renewed disease. Given how active my disease appears to be, I think this would have a good chance of happening in my case.

I'm glad that your surgery didn't trigger new disease in you, but please understand that this is a serious concern for those of us who have more aggressive cases. For example, one individual on this forum said he has had about 15 surgeries on his hands already.

So can we please all agree that in limited, non-aggressive contracture situations, surgery can have good outcomes, and leave it at that? If someone has a problem with a contracture in just one finger, they now have the choice of surgery, NA, or Xiaflex, which is a good thing. And they can make the choice based on their personal preferences and the specifics of their individual situation. For those who have pervasive, aggressive disease, with "nodules popping up like mushrooms" as one forum author put it, things become more complicated and -- at least in my opinion -- surgery alone is not going to be a very good solution.

This is a complex disease and we all have different situations and treatment experiences to share. So I, at least, would like to stop covering what feels like the same territory over and over.

Maddie

I agree that we should let this subject to be done and over with. It seems like i keep having to explain on why i feel like this on surgery. Everyone has their on problems with their hands. So lets get on with helping one another and find a way to get rid of this disease. MORE RESEARCH PLEASE! WE WANT A CURE!