All the best to you Sharon,

I think it is so important that your practitioner is experienced with the disease. We have heard this many times on the forum. I travelled to hamburg for ledderhose and was then told by prof S. That I had dups as well....initially I was disappointed, but now see it in a positive light.

Knowing that you have the condition and the information now on the forum puts you in a great position to be on top of the disease. It seems to me that the worst outcomes are for those who seek treatment once the disease has established itself..

I am sure prof S. Showed you how to monitor the progression. Keep an eye on it and get some comfy shoes and or othotic insoles would be my advice.

Best wishes to you.

Gazza

ffiscool:

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where do you live that you have gone to Germany? apologies if I have missed that somewhere else

So what happens next?

I am having issues with my feet too, but sometimes I think that can be normal plantar fasciitis rather than ledderhose. So as he found those nodules, do you now have those done too?

Frances

It has been 5 years as of last May since I had XRT in Essen. My only regret was in listening to my primary care physician at the time and delaying the XRT treatment by a year. The disease progressed rapidly during that year and as a result my left hand which is the one I write with has continued to be a problem while my right hand which was progressing rapidly below the surface but with only a nodule and no contracture has required no additional treatment and is "normal" for all intents 5 years later.

The amount of radiation is very small and it is focused on the tissue immediately below the skin. You are more at risk from sunbathing. I have had no skin dryness or any other problems with the skin on my hands these past 5 years.

I had a NA procedure done to release contractions with my hand 4 months prior to the XRT which I see as a way to limit the recurrence as much as possible. I had Xiaflex injections performed last year by the same hand surgeon who had done the NA procedure in 2007. If I had it to do all over my process would be the same.

In terms of skin problems these I experienced only with the Xiaflex treatment which resulted in severe swelling of the hand which in turn caused the skin to crack. My "recovery" from the NA was 48 hours, XRT was a couple days (sun sensitivity only), and from the Xiaflex was four weeks. With a fasciectomy the recovery time is anywhere from 3 months to a year for most patients and for as much as 6% of the patients there may be permanent nerve damage.

So far, my skin doesn't seem to be significantly drier, but it does seem to be thinner and more fragile, like there's not as much subcutaneous fat. My palm appears to be more cupped. Maybe it's just my imagination, but it does cause me to be somewhat fearful of my second course of radiation.

Maddie--
I don't know where you are, but where did you get your night splint? I live in the US but am in France for a while and would like to try the splint.