Hi

Yes it can be a nasty surprise to realise you have DD and it's slowly progressing. But this often means you have time to plan a course of action, and over the natural cycle it often stops progressing completely or does not lead on to a contracture that interferes with every day use of the hands.

If there are currently symptoms associated with ongoing or current progression then I would consider RT. I'm not sure who told you surgery after RT is out? This is low dose superficial RT that is not comparable really to the higher dose and depths associated with treatment of cancer tumours that often does lead to internal scarring or tissue changes that make subsequent surgery difficult. Symptoms would include itching, tingling, soreness, noticeable changes occurring over a few weeks or months. An alternative to RT if there also signs of inflammation may be a steroid (triamcinolone) shot and I think Dr Pess will treat that way if appropriate. Both of these may slow down any further progression which may stall or slow down on its own accord anyway as already mentioned.

NA and/or colleganase are indicated and appropriate for moderate contracture, and would be my first choice ahead of any type of surgery. But it does not sound like you would be a candidate for any of these at this stage. There can be for some recurrence after NA, or collegenase, but alas this too applies to surgery so the decision for moderate contracture is usually to choose the one with less down time or recovery.

I too have a cord that is slowly progressing, no symptoms and so to my mind not appropriate for RT. If it does lead to a contracture that inhibits some activities, in my case playing piano, I will seek NA, but that's my preference and it could change. In the meantime life goes on and as I get older, other health conditions become more pressing, so DD becomes just another condition to manage whilst making the best of everything else possible.

Let us know what Dr Pess advises. i think he is familiar with all the early treatment options including RT.

Best wishes SB

Here's an update to my story.
1. I arranged a Tele Health video meet with Dr. Pess. It was refreshing to speak to a man who is not only knowledgeable but understanding as well. He told me that I'm not ready for any kind of procedure but did suggest that I seek the advice of a hand therapist to get a splint (for ring finger swan neck) and consider steroid injections. I felt great after speaking with him and only wish I lived closer to NJ.
2. Met with a hand specialist who isn't an expert in Dup but has treated many post op patients for rehabilitation. She was very sympathetic. I spoke to her about the possibility of getting steroid injections and she recognized the potential value of that but had no professional experience with it. She said she'd speak to the doctor who'd be most likely to consider it. Unfortunately, he's the same one who told me to go live my life until my condition gets worse. I don't have confidence that he'd agree to the injections and even if he did, I'm skeptical he'd follow the AFP Journal procedure, using a full dose of 40 mg Depo-Medrol as outlined in Dougster's story.
3. So, for now, I'm waiting on the ring splints and trying to determine my next move. If anybody out there has a suggestion or referral I'm all for it.

Wishing you all well.
Chris (NH)

BRIANB:

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I have a lot of experience with DD...Dr. Eaton performed NA along with injections, on pinky and middle finger twelve years ago.Both are still perfect. Dr. Pess, and Dr. Diaz in Florida both of which have treated nodules with injections are both EXPERTS in this field.
If I were you, seek out one of these experts. Injections in my case has shrunk and elminiated cords. Have this done sooner rather than later. All cases are unique of course,but I would not wait until you have a bent finger. That is old school thinking,in my opinion.

BRIANB:

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Yes,each time it was a Steroid. Sorry,I do not recall which steroid was used. I would not have just any ortho inject me. IMO,even if you have to travel a long distance to see an expert,i strongly suggest doing it. Dr. Pess New Jersey... Dr. Diaz Jupiter Fl.
Good Luck.