Hi,

Thanks to everyone for sharing. I am 36 and noticed a very tiny nodule in the palm of my right hand about 7 years ago. Had no pain or impact except I wondered why I couldn't straighten my pinky on the ground when I did yoga. The nodule got bigger about 6 months ago and thanks to this site I figured out what it was.

Went to the doctor in Southern cal and he said I have 8 degree contracture and pointed out the knuckle pads on several fingers. He knew it was DD but blamed the soreness in those knuckles on tendonitis. Got two cortisone shots that had no impact on the soreness. He performs surgery, NA, and xiaflex but told me he suggested I do nothing until it gets worse. He did however say that he'd be happy to perform NA or xiaflex. Surgery is not an option at this point. However he also indicated that NA or Xiaflex could awake the sleeping giant of DD though not as likely as surgery. He seems extremely knowledgeable in this area. But I was expecting him to encourage NA.

My hands are fully functional although I do need to compensate slightly when I play tennis and my handshake is sometimes awkward. My PIP joint doesn't seem like it bends at all. It's the palm just under the Pinky finger that bends in and the cord is about an inch below the pinky and ring finger

I've seen some posts about flare ups even with NA and I'd appreciate any thoughts on this or other downsides of NA. also, if anyone had suggestions considering my age and the early stage of this. I thought it would be good to do NA sooner rather than later but not really sure. Thank you.

Hi Husker,

I think Seph has given an accurate perspective of what we all face. In other words we don't know what to do, everyone's experience is different and there is not a lot of research going on regarding this disease.

In 1993 or so when I was diagnosed the advice was to do nothing. Now I would have done it differently, after having multiple palmar fasciectomies (PF) and one finger amputated with at least two more to follow soon. Sorry if this is scary but it is.

What I have learned is we should be very proactive with this disease. Early on, as many folks on this site have suggested, try non-invasive therapies such as massage, splinting perhaps, DMSO intrigues me as it has helped horses my family raised overcome severe orthopedic issues (yes I know we are not an equine species but medicine is transferable among us to some extent) then Xiaflex, then NA, then surgery. Do not wait too long from one stage to the next.

My next step is to look at what Dr. Ketchum from Kansas has done regarding combining a PF with a skin graft over the site of the surgery. The thought being the derma contains the causative agent of the disease. The information and a video presentation is above courtesy of cschieber if memory serves.

My advice is to get two or three opinions from different doctors familiar with DD. Do your research. Make your decision.

Good luck and let us know what you find and how it goes.

Brian

Hi Husker!!

First let me say that it is a pleasure to be on a forum where there is so much information bandied about, and so many places to go in order to research oneself, and then to ultimately make a decision that's best for each of us. Many times the doctors I have seen are amazed not only at my knowledge (and I don't come close to some of those here), and in some of the techniques I've been employing to prevent the disease from reoccurring.

I've done the "wait and see" route, I've had two unsuccessful Xylaflex injections, and in November and December of 2012 I've had NA done. My left PIP pinky joint also had to be released surgically. This past Monday I returned for a follow-up visit. There is no sign of a return...both palms are totally flat, my pinky is coming along, although I will continue PT and some additional daytime splinting. I'm down to once every other week for the night splint on the better hand. The hand with the pinky release---it will be a long time before I can go without the night splint, but you know what-----if that will keep it from coming back, I can easily do this!! I also know that I do have to keep careful watch, because I do not want to be in the position that it gets so bad that I will require more than NA, which I found a walk in the park compared to everything else. My Dupuytren's began in 2001, after a car accident, on the less affected hand. The second hand was good until about 2007 and then it started with a vengeance. Since Xylafelx was in trials at that time, my doctor suggested that I wait, which I did. I had those injections back in 2009 and 2010, but the Dupuytren's was back worse than it had been within about 5 months. So, I am cautiously optimistic that I am on the right pathway for me right now.

Husker, I haven't been able to correctly hold my tennis racket in many, many years. Now I can. I can clap my hands again.....it's the little things in life!!! Please don't wait too long---stay pro-active---stay involved in this forum---there are so many who are willing to share the good the bad and the ugly....but it assists in making the right decisions for ourselves too!! Good luck!!

Thanks to all of you for your helpful responses. Sounds like great advice all around. I will be proactive and research all options. I will hold off for now, consider massage therapy, but if it gets a little worse I will likely get NA. Will keep the forum posted on progress.

Another question...is soreness of the knuckles a symptom of DD? My doctor said it was tendonitis.

Also, I went gluten free for about two weeks recently. The soreness almost went away and my DD contracture felt a little better. Not sure if it was in my head considering people say gluten free is good for joints. I will try it again and let you know it it helps again.

Today was my 15-day follow up for the multi cord Xiaflex trial. Two doses worth of injections, a total of 6 sticks, were on April 15 and the finger extension/manipulation was the 16th. Since then, I've worked really hard with my prescribed exercises and splint at night, and painkillers for the first few days to work through the pain. It's not been easy, for sure, but success is measurable. Before the Xiaflex, my PIP was 35% contracted and my MP was 30% contracted, both of my ring finger. Today was the measure. My PIP was 10% and my MP was..... are you ready? ....... 0%. Yup!! ZERO!!! The doc thinks that I can gain another 5% at least on my PIP with some more work, because she can almost force my finger to that. Ouch!! But, she can. I've worked hard. No way I was going to let this all be for naught. I will continue to work hard. Maybe, I'll take part in a 5-year follow up. I don't know. It depends where I will be in five years.

I had open surgery on my left hand and now Xiaflex on my right. I'd repeat the Xiaflex in a heartbeat over open surgery any day. Yeah, it hurts. But so does surgery. Bottom line, color me HAPPY!!

Next appointment is my 31-day follow up in two weeks. Stay tuned....