2 weeks.

Pinkie PIP and DIP on left still tender unable to make fist but pain isn't too bad just stiff and swollen. Swelling is going down slowly. Started stretching more aggressively on DIP and PIP when pain allows. Looks like I'm still going to have stage 1 at DIP even though I am vigorously stretching like DIP joint forgot it was once straight. Stretching boutonniere.

Pinkie DIP on right tender but with improved motion and can make fist with limited discomfort. DIP still swollen but finger is fully extended to almost normal. Tear is healed. Started aggressive stretching on this hand as pain is minimal.

Able to use hands under average circumstances...not pushing it.

3 weeks.

Pain and swelling on both pinkies significantly reduced. Unable to make tight fists but getting closer. Have been using hands for moderate strength use. Continuous stretching throughout the day. Tenderness on palm area where cords received treatment is almost all gone. Wounds almost all healed just dry skin.

Doing PIP boutonniere exercises on left (left MCP & DIP was stage 4) and seeing some straightening but nothing miraculous. Left DIP remains stage 1-2. However, able to bend MCP back within alignment of adjacent fingers so still happy with what I have. Again, I left this hand go far too long.

Right pinkie is straight with slight bend at DIP (right DIP was stage 2.) I'm thinking this is more swelling than anything.

Both DIP's feel like they cannot travel any further back than they have been able to over the last 3 weeks. Almost like they were fused at that Dup's angle and have forgotten where straight is (especially left stage 4.) Whether this is due to swelling I do not know. However, at present I'm not expecting to wake up one day with swelling gone and suddenly DIP's are straight. Current mindset is that I will retain what I have for now.

I am interested to hear whether open surgery or X'flex has returned Stage 4 DIP's to normal?

Still very happy I went through with the procedure. It's amazing what a subconscious dark cloud this Dup's has been. Being able to shake hands without performing a sleight of hand is a small miracle.

- M

LubaM.:

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Hi Mark,
Thanks for the update. Since I had my NA with Dr. D one week before you, I am interested to compare notes. Remind me again...did you have DIP's in a "boutonierre position"? ... I mean did the tip of the finger bend upwards? That is what I have in both pinkies, PIP contracture, plus boutonierre for the DIP joint.

My left pinkie NA I had done on 5/21 is showing some improvement, but I'm not there yet ! Like you, the swelling on the palm is mostly gone, and the finger is a bit less swollen, so I can make a fist and bend the PIP of the pinkie, but the DIP seems to be "locked" and is hard to bend, unless I push down the tip of the finger into the palm with the other hand. I am hoping that with continued exercise it will get better...

The only problem I have, two weeks after the NA, I developed a "cord-like" swelling on the outer edge of the pinkie that is swollen and painful, so I am trying to resolve that by keeping the finger wrapped with "coban elastic bandage" and by massaging often to try to reduce the swelling, also continuing to do the exercises and going to therapy twice a week. Dr. D said that this "cord-like" swelling is very unusual, could be scar tissue ?, and it would help to injected it with cortisone, but I am not ready for that (ouch!).

I guess it will take time, the improvement is very slow but (except for the cord-like swelling) it is going in the right direction.

Did you ever get a night brace?

Luba

Hi Luba,
I've been of the site for a while. I saw you had NA again recently with Dr. Denkler.

Mark,
I suggest getting the night splint as soon as you can. It does it's work at night while you sleep. It made difference for me.

You're right, having severe contracture makes it harder and more recovery. My contracture was about 20 degrees and I was on top of it. I didn't have a splint the first NA, but I did get one after the 2nd NA. It straightened my hand and gave more span across my palm. My contracture was in my palm and the fingers affected were in the MCP joint coming out of the palm. If there is anything good about this weird disease, for me I think it was that PIP and DIP finger joints were not involved.

I had RT right after my first NA because my DD was mostly in the nodule stage with nodules forming noticibly. Over a 6 week period, nodule count went from three small areas targeted for RT to the need to radiate my whole palm. I was lucky that I was set up for RT because it was progressing rapidly.
I did have some cords in my palm that RT did not stop progressing, although I think they might have contracted more without RT but we can't prove a negative. Cords continued to tighten, so 2 years later, I had NA again wit Dr Denkler. The 2nd time is when I got a night splint. That was 2 years ago and I still wear it, but I don't feel there is a problem if I miss wearing it for a few days. However, I intend to wear it probably forever. I went back to the splint maker 3 times to get it adjusted. He is very available to adjust it whenever I need to.

4 weeks.

Wounds healed with slight tenderness in some spots, extension progress remains the same straight on right, stage 1 on left (left was stage 4+.)

Being an active musician all my life it has been a joy to get back to octave bass on the piano and conventional tuning on the guitar. Although the revised guitar tuning to accommodate dups' was an interesting journey.

Very happy I got NA done. I'm guessing I'll need additional work on the left.

- Mark