Tjay:

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Hi Seph I will think about this I would like to get something done, is sending a picture like the one I posted good enough?, those words: "that's not it" I've heard so many times here along with cost make decisions like this hard.

Regards,
Tjay.

How do I see photos of Dupuytrens on this site

Or on the web site, e.g. http://www.dupuytren-online.info/dupuytr..._therapies.html and http://www.dupuytren-online.info/needle_aponeurotomy.html.

Wolfgang

eastwind:

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How do I see photos of Dupuytrens on this site

Hi. I have posted a little bit in the past about RT and would like to share my results and recent experience with NA. Like many here, I was diagnosed with DD and told by the hand surgeon to go home and read about it and come back in six months or when it was worse. I discovered this forum and learned about the disease and treatment options (thank you to all who post here!). Last year I had RT in Virginia. At the time, I presented with large, painful dorsal nodules on the PIP joints of four fingers. I also had some nodules on the PIP joints palmar side of the RH forefinger and LH middle finger. Radiation was applied only to the dorsal nodules. Before the second round I developed a new nodule, palmar side of RH PIP joint ring finger but Dr dismissed and said she didn't feel anything. Believe me, it was there. I liked the doctor I saw however I would advise anyone who presents in an unusual way, as I did, to seek a radiologist who has seen many, many people with the disease.

I don't know if RT helped. The dorsal nodules remain the same, so perhaps it did. However, DD progressed in terms of contracture and palmar nodules of RH forefinger and LH middle finger PIP joints and nodules on RH ring finger and pinkie, palmar side PIP joints. I received NA to release these contractures, which weren't too bad at the time; 25 and 40 degrees, respectively. Release was successful, at first. But in the short two months since then, fingers are bent again, despite diligent night splinting and even worse, I now have many new nodules on both palms wherever the needle went in, which weren't there before NA. Also, the PIP joints where I was treated have much less range of motion, opening and closing, and are quite painful. These symptoms are new. It's almost as if the NA activated the disease and sent it into overdrive. The nodules on the palmar side of my RH ring finger and pinkie PIP joints literally doubled in size. I'm also developing contracture at the MCP joints which I didn't have before. I have a general feeling of tightness and kind of like, the disease is in my face every time I use my hands and this definitely wasn't the case before NA.

I am sharing this because I researched NA extensively and didn't find one single example of a negative side effect and yet here I am so much worse now than I was before treatment. I am so discouraged because both of my hands are a mess and I'm very worried about losing function (I'm only 56).

I believe that if I had gone to Germany for RT last year, I may have been treated differently and not have progressed to the point of needing NA but I couldn't arrange it with my schedule at the time. However, I"m now off to Hamburg to see the good Prof. Seegenschmiedt to see if I can have further RT in the hopes of stopping progression and allowing me to possibly have future procedures without activating the disease. I don't know what my options will be if he says I'm not treatable. If NA wreaked this much havoc, I hate to think what surgery would do.

I will update when I get back from Germany. Please keep sharing your success stories. They are wonderful and encouraging to read. Thanks.

I have recently, over the last several months, had Xiaflex and NA treatments on two fingers of my right hand. The last time was Monday and Tuesday of this week. The NA was interesting as you could hear the "crunching" of the cord and scar tissue as the needle was inserted and moved around. I recall some people do this procedure do not use a local anesthetic. I cannot imagine trying this without at least a local. It would be torture.

Unfortunately, while there is some improvement at the knuckle joints, the PIP joint is fully contracted on both fingers. I had a palmar fasciectomy (PF) done on these two fingers and palm several years ago and there is simply too much scar tissue for the Xiaflex or NA to provide a complete release. I will have the two fingers removed at the PIP joint, which is better than at the knuckle which is what had to be done on the little finger of my left hand. The key is to try as many other treatments as possible prior to resorting to a PF as the scar tissue created by this very invasive surgery may make the other treatments ineffective.

I will try Xiaflex on the ring finger of the left hand, which is not nearly as contracted as the right hand fingers, in three weeks. I also had a PF on that hand about five years or so ago but we are hoping the fact the disease is less advanced will give us a better outcome.

Edited 03/28/13 19:19