Megan,
I think there is a warranted feeling that the less you mess with Dupuytren's, the better. The disease often can be stimulated to become active in various ways, but not fully understood. I know many people who have had the nodules for much of their life and that is the extent of their Dupuytren's. Often there is no advancement to the contracture stage. So, the Doctor was probably following the idea of not to mess with it unless it was really causing you a problem.

Interesting, Megan. You might have mentioned it before, but do you mind my asking your age and if other members of your family have DC? I'm 33, and as far as I know only my mother has it. We have surmised that previous generations in our family must have had it but might not have identified it because the disease never progressed much. So, it could very well be that you never have to see the knife.

The surgeon I saw in London told me the same thing: "have surgery on the knuckle pad if you want, then watch and wait in regards to contracture." When I did some investigating and asked him for a referral for radiotherapy, he refused. His secretary merely said he did not feel strongly about the treatment. I pressed for more of an answer and received a detailed email from him saying he doesn't have experience with radiation and so cannot prescribe it, but that he would be interested to know how it goes for me. So, in my case, the doctor never brought it up because he simply didn't know enough about it.

Megan,

Your experience with Certified Hand Surgeons (CHS) is unfortunately all too common. I believe the reason is the general conservatism in the profession. You would think that the top specialists would want to be on the cutting edge, as a few like Denkler/Eaton and others are. However, the majority would rather sit back and just keep doing the same old thing. As an example, Dr. Charles Eaton lead a team of experts explaining new treatments to a meeting of the American Society for Surgery of the Hand (ASSH). This made little impact.

The cortisone injection treatment I received from Kline made my nodules smaller, softer and less painful. Meanwhile the full Open Surgery I had on the other hand did seem to trigger the subsequent spread. I play drums so the articulation of the fingers is not *as* important as with other instruments but my typing is now apparently shot for life and about half speed. While I had an *unusually* bad reaction to surgery, that is much more common than a bad reaction to the shots. I will return to Kline or Denlker if I can't find someone in LA who is thinking a little out of the box of the usual surgical handbook.

While my UCLA CHS admitted Eaton's NA was the better treatment for me than his prior Open Surgery, he *still* will not perform it. He is a former head of the ASSH. Apparently a real pessimist on alternatives. After that I'm not sure even raising someone from the dead would change minds either :-)

Actually TrevB, the MD of which I speak is among the most highly regarded CHS in American. I have had younger CHS actually want to see the scars he left behind. I'm serious! He belongs there all right, but for me as a symbol of how *utterly* conservative these guys are. It's profound.

On the other hand (so to speak) we as patients have made an End Run around this Brick Wall by reaching other patients on the Net. The previous BioSpecifics Forum was used in this way to bring NA from France to the US. Yes, we needed an open mind like Eaton (rare) to do it, but without that Forum Eaton would still just be doing the standard surgery, and from what I hear, not as well as my UCLA surgeon.

We as patients just need to know what we are dealing with in regards to this profession and act accordingly. Do your own research.

Hey Megan, I am 36 and play guitar for a living. Got my first nodule in my left hand about 2 months ago. It definitely made playing guitar a little harder. It felt like my hand cramped up a bit when playing.

Got a steroid injection about 2 weeks ago and it feels like my hand has relaxed quite a bit since then. Playing is easier, and the nodule is also a bit smaller. Now I am feeling more confident that Dupuytren's is not going to slow down my career.
Still thinking about the radiation though, just to be safe.

This site is amazing. Thankyou so much for everyone who has shared their stories on here. It has been great to balance out the doctor's opinions, with the opinions of people on here who are actually struggling with the disease.

It certainly helped me, knowing that other people had success with steroid treatments.
Hope this helps you.

Paul