Greetings,

I am very happy and appreciative to have found this web site as I am experiencing DD (or DC, don't know which abreviation is preferred).
It is very helpful to find how others are addressing this issue. I live in BC Canada.

Though I had nodules starting on my left hand palm below the small finger about 14 years ago (I'm 60), it only progressed to a 90 degree bend from the metacarpal phalangeal joint over the last two years which has made some type of treatment necessary. I'm also finding 2 nodules starting on my right hand small finger. After reading all of the posts here, I am contacting doctors in Nevada, California and Washington State. There is not a clinic near me so, I will fly to one of them.

Dr. Ericson's office told me that he does not use Xiaflex, stating that is is too new a drug. N/A might be best but I'll have to wait for the opinions to come in.

I am of northern european stock and drove trucks for many years until 2005, not that there is any correlation but, perhaps.

As I go forward in this journey, I hope to share my experience in order to benefit others.

Best wishes to all.

In order to avoid Open Surgery most US docs are now using Xiaflex. Before Xiaflex was approved NA had been imported from France where it was developed over 50 years ago. The limited acceptance in the US by hand surgeons was largely patient driven using this and a previous Forum to inform patients. We still certainly do that today but the urgency to convert surgeons to NA is far less, and actually more difficult because Xiaflex is the alternative that most surgeons trust.

Personally I believe that in most cases NA is preferable. Fortunately you have an MCP contraction as opposed to the PIP on your little finger. MCP is much easer to treat and NA will be far less expensive as you will be cash out of pocket from Canada. At 90 degrees it is definitely time to act.

Dr. Keith Denkler is highly respected. If I need more NA I'm off to Larkspur, CA.

My experience, for all it's worth is as follows:

I had surgery about 12 years ago for DC on my left hand. To this day, my hand is perfect. I have a scar, which isn't noticible, unless I point it out to people. It's nothing. I have a few nodules and cords that developed right after the surgery, but no contractures at all. My hand is perfect.

But, as of about 4 years ago, I started to develop nodules and eventually contractions in my right hand. My ring finger is at 45 degrees at the PIP and the MP is at about 25 degrees. I've started contracting now in my middle finger MP. My hand, which is my dominant hand, is really hanging me up, including the fact that I absolutely cannot spread my fingers.

Last year, I entered into a multiple cord Xiaflex trial, hoping to avoid surgery. It was painful. The immediate pain was intense, and the lingering pain went on for months. But now the pain is gone. But the contractions are back big time, and advancing. They say that Xiaflex has a 30% or more recurrence rate, and NA is about 80%, which is why I went with Xiaflex. Well, Xiaflex had a 110% recurrence rate for me. It was a total failure, and I'm never doing that again.

So now, I'm scheduled for surgery on June 9. Given the success I've had with my previous surgery, this seems totally the way to go. I told my surgeon that right now I'm more afraid of doing nothing than having the surgery. That's not to say I'm not afraid of the surgery. I'm in a bit of a panic. But, my left hand is the gold standard that he is directed to accomplish. Because of the Xiaflex, the surgery will be more complicated, as the surgeon (a different doc than who did the Xiaflex) said that the Xiaflex is like a bomb going off in my hand, with the scar tissue he now has to work around. I'm scheduled for a 3 hour procedure. Damn......

Welcome to the group, however sorry that you have to be here. It's helpful. I don't come by here often, but it is a comfort and a huge educational experience.

~~ Diane

Best of luck to you, Diane! I thought Xiaflex was going to be so great but, as I read more experiences it appears it is a mixed bag.

I had Xiaflex on my ring finger of my right hand about two years ago. Last fall, I had open surgery on that same hand and it involved palm, pinky, ring and middle finger. For me, there was no complications from the previous Xiaflex. Just my experience ...

~ dawn