Hello everyone. I haven't posted much since last year because I haven't had anything to share but I had NA two months ago and would like to share my experience. I posted this on the personal experience thread but thought I'd start a new thread as well since many readers may not be following that one.

Last year I had RT in Virginia on my large, painful knuckle pads. Sounds odd, I know, but I didn't think I had any obvious nodules on my palms or underside of my fingers. Turns out I was wrong, actually. I'm sure treatment would have been very different had I been able to make the trip to Germany at the time. (Sigh) Unsurprisingly, the radiation wasn't effective and my two most badly affected fingers began to contract.

In January of this year I had NA release done to the RH forefinger PIP joint (was 20 degrees), LH middle finger PIP joint (was 40 degrees) and both thumb webs. Got excellent release in webbing, good release of index finger and moderate release of middle finger. I diligently splint every night with Fixx Gloves. The sites where the needle went in were very sore for about two weeks are still tender. Both PIP joints have even less range of motion then they did before the procedure. I used to be able to close these fingers pretty tightly but no longer can. All of the nodules in these joints feel bigger, harder and very tender. In the past month, I have grown new nodules in my palms EVERYWHERE the needle went in. There were no visible palmar nodules before I had NA and now I have 6 big ones. My hands have been feeling tighter and tighter and I just discovered that this is because I'm beginning to get contracture of the MCP joints of both fingers which were treated. This is also new since NA. My fingers are reasonably straight in the morning when I remove the splints and contracted to pre-procedure degrees by bedtime.

The nodules seem to be getting worse still. I drove to Atlanta from Philadelphia, in February, with no discomfort. I did the drive again this week and my palms were very sore after about 9 hours of driving. I guess I'll have to get racing gloves. :) It's a look.

I had knuckle pads on the RH 4th and 5th finger which were part of the RT treatment. I started to get a nodule on the palm side of the ring finger before I had the second RT. I later developed a nodule on the palm side of the pinkie finger. Both of these nodules have doubled in size since I had NA and the MCP joints of both fingers no longer hyperextend. The needle didn't go anywhere near these fingers.

I feel as if NA sent my DD into overdrive. I really can't believe how much worse my hands are now than they were just two months ago. They are tight and sore all of the time now. It makes me very fearful of surgery, too, which I know must be in my future.

Now I am finally going to Hamburg, which I should have done last year, to have RT applied on the palms of both hands. I'm hopeful this can be done as they were not radiated the first time. I will keep you updated. (Interestingly, the knuckle pads didn't get worse since NA so maybe radiation did help stop progression there).

There was no way for the doctor to know that NA would make my condition worse. It's just another example of how this disease is so specific to the individual. I knew I had aggressive disease but now I know just how aggressive it is and will have to choose future procedures very carefully. I am even worried about the RT I may be getting as I've read that in rare instances, it can make the pain and discomfort worse. It's all so frustrating and discouraging.

Thanks to everyone who shares their experiences. Like so many others, when I was diagnosed I was given no information and told to come back when things got worse. This site has been the most useful source of information I have found on this disease. I would feel quite lost without it.

I have felt for a long time the slight vibration of the steering wheel while driving...does create a perfect environment for Dups.

well padded gloves and not holding the steering wheel tightly are good precautionary measures in my opinion..

Keith Denkler was one of the earliest to jump into NA after Eaton. He is more aggressive but gets great results with few complications. If I ever need more NA I will fly up from LA to see him. He's just a great guy too. My guess is that with as much NA as you had done you would have had the same results regardless of MD.

NA only releases contracture of cords. It does little or nothing for nodules.
RT does nothing to stop cords from contracting, but it very often does stop progression of nodules in ACTIVE Dupuytren's.

When I first had DD in my right hand to become active, I was on it like white on rice. Thanks to this website, I found out about NA and RT and Xiaflex that was in the clinical trial stage. (I knew I didn't want to do as doctors said, "Wait until your hand is contracted a lot more, then have surgery." No! I don't think so!)

I didn't know whether to have NA first on cords in my palm and thumb or RT for the nodules in my palm and thumb. I opted to have NA first with Dr. Denkler, in February 2009 for about 15-20% contracture. The cords were released.

I made contact with Dr. Tripuraneni, Scripps San Diego/La Jolla. I saw him first in May 2009 for a consultation. His opinion was that it was the right thing in my case to have NA first, then RT. He marked 3 areas about the size of a nickel on my palm to radiate. My personal schedule keep me from having RT right then, so I scheduled it for July 6, 2009. When I went back to have the RT done, nodules had now developed in every quadrant of my hand. He palpated and determined that the whole palm, all MC joints and including both joints of my thumb. That's how fast the nodules developed in less than 8 weeks.

It worked out best NOT to have RT in May because my DD was very active and rapidly developing new nodules. By July, it was more apparent that nodules were developing all over my palm. RT is best done on ACTIVE Dupuytren's in the nodular stage. I had the protocol of 2 GY x 5 days for 2 consecutive weeks for a total of 20 Gy in 14 days. It stopped the progression of nodules in the radiated area.

Now, the cords did continue to gradually contract. I went back to Dr. Denkler in July 2011 and had NA successfully done again on the same hand. I got a prescription for a night splint this time. I wore it every night for a year. Gradually, the splint stretched my hand out more than just the release had done. As of this time, that hand is still doing well. I wear the splint about 3 times a week now. So far, I think the treatments I've had and wearing the night splint will keep the disease at bay for a long time. So far, it's been 2 1/2 years and it's maintaining.

For my hands, I believe there are several key points at least for me:

Key #1 - Have early treatment options while contracture is less than 30 degrees. I opted for NA first and when I had little contracture.

Key #2 - Have RT when the disease is active. For me, there was a certain amount of luck in knowing that. Thankfully the delay in having RT was delayed so the aggressiveness of the disease could be seen and RT done on the whole palm.

Key #3 - NA does not work on nodules.

Key #4 - If DD is in the active nodular stage, that's when RT needs to be done.

Key #5 - Using a night splint helps to push back on the disease.

Key #6 - Know you own hand. Nobody can know it as well as you.

Key #7 - I was lucky in determining what to do first and at what point in the disease.

Key #8 - I am lucky in that I have the disease in the palm rather than up in the fingers.

What is interesting, and everyone knows it, is that Dupuytren's can be so different for everyone. That is why it is so difficult to say what works and apply it to anyone else. For me surgery was the absolute best thing that I could have done. For someone else the results could be totally different. Same with any of the procedures. Then there are those people who go their whole life and the contraction phase never occurs. The only good thing about Dupuytren's is that compared to most diseases it is a minor disease in most cases and not fatal.