I myself had surgery 12 years ago and still no recurrrence, which is great. My surgeon once asked me: "Do you know what makes a good surgeon?" - "No" - "Picking the right patients". I liked that answer.

Wolfgang

callie:

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I think it is often too easy to place blame on a procedure, or anyone else involved. I believe that there are some cases that are destined for failure just because of the aggressive nature of Dupuytren's that some people are unlucky to have. Duputren's can be very aggressive and not curable.

You said, "A significant problem with DD is that people in the medical profession don't understand the disease."

There are quite a few in the medical profession who understand the disease. The problem is that this disease does not act in a linear fashion. As most everyone acknowledges, Dupuytren's seems different for almost every patient. There is no "silver bullet". People can have problems with every procedure for Dupuytren's. I had surgery and have had zero problems from the surgery. That doesn't mean that everyone will have zero problems.

Who was your surgeon? How long did you wait (what degree of contracture) before having surgery?

Edited 12/15/12 23:06

Hi Brian,

what are you specifically referring to? Have you seen any data or is that something your doctor was telling you? I am just curious because so far I know very little data comparing Xiaflex, PNF, and surgery. Studies only started recently but maybe some of the results have already been reported on conferences. BTW, you can find information on Xiaflex not only in the forum but also on this web site http://www.dupuytren-online.info/dupuytren_collagenase.html.

Wolfgang

Brian_PDX:

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... I have since found out the recovery rate for Xiaflex is higher than that for surgery. ...

Edited 12/16/12 09:26

Wow, I'm really surprised to learn that the NA gave you so much discomfort. Certainly it was uncomfortable for me, but not unbearable and I had no recovery time needed at all. The reason you can't be "out" is because you need to be able to feel it if a nerve is touched. At least that is what my doctor told me. What REALLY hurt me was the xyaflex injections------now, that was painful. Yet, many in this forum talk about how insignificant that discomfort is. Unfortunately, my Dupuytren's came back with a vengeance after two of these injections. Goes to show you that we are all different, though battling the same disease. I am under two weeks in having NA, but I also required an open procedure to free my pinky joint, so I am still caring for the wound, whilst starting some exercises. It is so much better, despite the swelling, etc. I'm experiencing now, and believe me when I say I credit my fantastic doctor for this. I am located in upstate NY, and had to travel to New York City for the procedure.

Good luck to you in your search for the "right" procedure for you!!!

Thank you for all the response and information. I will hang on to Dr. Buehler's contact info in Portland. I do not believe my problems step from poor surgeons (I have used two) but from the surgeon's motto: "If you can cut it you can cure it" which closes their minds to other options such as Xiaflex which should be tried prior to something as painful and invasive as surgery.

Let me try and respond to as many questions as I can. My data comes from the Xiaflex manufacturer who has been terrific in assisting me to overturn the rejection of coverage by Molina insurance. 77% of the 374 patients in the clinical trials experienced improvement of up to 36% more range of motion. I would take these results in a NY minute. The Mayo clinic site is also good given this disease usually effects people of northern European descent and Rochester is in MN. This website is also useful to connect to data and dupuytrens-contracture.com. The recurrence rates I see are 19.3% for Xiaflex, 34% for fasciectomy and 85% for NA.

Doctors should provide access and options for all of these options and the patient make the decision. The comment that a doctor "picking the right patient" is the key is PR nonsense. The Hippocratic oath requires the doctor to treat the patient in front of them. Please note my undergrad degree is in biology plus the MBA focused on behavioral science. I have five years of clinical and medical research experience and was a teaching assistant for one of the top anatomists in the world. I have enough knowledge to be dangerous or at least a pain in the neck.

As to the pain with Xiaflex my doctor now uses more than just local anesthesia during the adjustment. He uses a nerve block with IV anesthesia so the entire arm is deadened. He feels strongly he should not put people through the kind of pain he has seen during this procedure.

As to the claim "many" medical professionals understand the disease this is simply inaccurate. I live next store to an RN at a major regional hospital and after 30 years in the industry she has never heard of it. I went to an MD in Portland who, while he heard of it in medical school had never seen a case of DD in over 20 years of practice. The disease is simply rare and not life threatening. My conclusion has been research began in earnest after Ronald Reagan and Margaret Thatcher contracted the disease. When a former President and Prime Minister are affected it gets people's attention.

Xiaflex was approved by the FDA on February 2, 2010 and, as is usually the case this early in the timeline, have yet to turn a profit. The manufacturer has been terrific in responding to my needs and I encourage anyone to go on the website xiaflex.com and call them for help. Thanks to all.