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01/20/18 16:08
NancyP 
01/20/18 16:08
NancyP 
New member to this forum

Just joined this forum today. I'm finding it very informative and hope to find a treatment that might work for me.
Here's my story:
I have been dealing with Dupuytrens in my hands and Ledderhose in my right foot for about 10 years. I have had surgery on my right pinky three times and surgery on my right foot twice. One year after my last surgery on my right hand, the contracture has returned (approx 50%). My doctor has been monitoring it for six months now and it does not seem to be progressing beyond this percentage. I've made up my mind I can live with this if the contracture stays at this percentage. My left hand is now developing nodules in the palm and lower pinky, but no contracture yet. We will continue to monitor and will consider some sort of injection to break the cords if contracture begins to develop. I also developed knuckle pads in my right hand. Injections done in my last surgery were very effective in reducing the pains but the pads remain.

My right foot started with one nodule in the arch. We monitored it for more than a year, watching it grow in size. I elected for surgery. Over time, more nodules returned-even larger, so we tried surgery a second time. I guess I have a high rate of reoccurrence as I now have several nodules in my right foot. I tired inserts in my shoes, but found these to be very uncomfortable and more painful. My new doctor said NO MORE SURGERIES. I tried Virapamil for one year, but saw no improvement. Then tried monthly cortisone injections directly into the nodules (the acutual injections were quite painful) but saw no softening or reduction in size. So for now, just learning to live with it. I experience some pain and mostly first thing in the morning, and numbness and stiffness in the big toe and second toe. Stretching helps a lot.

Since I have found this forum, I'm hoping to learn about other treatment options. There seems to be some real experts on this site, so I am hoping to hear some of their thoughts on my situation.

01/20/18 16:20
wach 

Administrator

01/20/18 16:20
wach 

Administrator

Re: New member to this forum

Hi NancyP,

welcome to our forum! This forum - and the connected website - are very good for getting am overview of treatment options. In 2015 we surveyed about 2,000 patients with Dupuytren and Ledderhose disease and, besides other things, asked what treatments they have had and how they would rate them. Results are on https://www.dupuytren-online.info/patient_survey.html . For Ledderhose the best treatment seems to be radiotherapy while it is more difficult for Dupuytren's. New nodules can be treated by radiotherapy https://www.dupuytren-online.info/radiation_therapy.html and there is a good chance that this will stop further growth. For contracted fingers collagenase injection (brand name xiaflex) https://www.dupuytren-online.info/dupuytren_collagenase.html or needle aponeurotomy (NA) https://www.dupuytren-online.info/needle_aponeurotomy.html are minimally invasive options which might be worth a try before undergoing surgery. The recurrence after collagenase or NA is typically faster than after surgery but you can extend the recurrence period by regularily wearing a night splint.

Wolfgang

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surgery   Ledderhose   contracture   progressing   percentage   improvement   collagenase   Dupuytren   dupuytren-online   treatment   radiotherapy   contracted   Injections   nodules   recurrence   aponeurotomy   returned-even   uncomfortable   informative   reoccurrence