Hello, everyone. I'm new to the forum and am so glad to have stumbled onto the site. I was diagnosed with Dupuytren's about 10 years ago and it is just now becoming debilitating enough in my right hand with nodules forming on my right foot to seek further care and possible surgery. I'm 48 years old and healthy otherwise except for high blood pressure. I went to see a hand specialist at USC Keck Medicine but he didn't seem to know that much about Dupuytrens, wanted to rush me into a procedure through which he would cut into my palm to stop the contracture, and had a terrible bedside manner. His name is Milan Stevanovic and I do not recommend him even though he heads up the hand department there. I found the list of Los Angeles area doctors and wanted to know if there are any other doctors to add to this list of referrals in LA:

Dr. Ross Nathan, Long Beach
Dr. Prosper Benheim, UCLA
Dr. Prashakar Tripuranei, La Jolla
Dr. Denkler, Larkspur

thank you so much @spanishbuddha for pointing me to the list. I have a lot to learn about the disease but I guess I better educate myself bit by bit. First-I have to learn the acronyms! I am really glad to hear that surgery should not be a first resort. It seemed very abrupt to me and the recommendation wasn't provided with any other information about other treatment options.

Thanks, Brian...I appreciate it! Its scary to do some of the research but this group seems very supportive! I appreciate your sharing your story of having to go to an unhelpful doctor before finding the right one.

What is unique with Dr. Denkler is that he is an experienced certified hand surgeon who became on of the early practitioners of NA and later one of the first to use Xiaflex. He can evaluate your hand and make an informed an unbiased judgement as to what treatment is best for your hand.

The problem with open hand surgery is the loss of all blood to the hand for the 90 minute duration of the fasciectomy and that often results in permanent nerve and muscle damage. Recovery is also measured in months with this operation as compared to less than 2 days with a NA procedure and about a week with the Xiaflex injections.

I first saw a hand surgeon, Dr. Ronald Gemberling in Campbell, California who only had experience with fasciectomy and he downplayed the risks. I knew that studies had found severe complications with 5-6 percent of the operations and he pretended to be ignorant of the risks and ignorant of the lengthy recovery time needed after the operation. He told me that NA was a high risk procedure which was a lie. He made 3x as much with a fasciectomy as compared to a NA and no doubt that affected his judgement - to the detriment of his patients.

Safest is Xiaflex as least chance of nerve damage. I got the best results with Xiaflex followed within a day by NA. The Xiaflex is more effective where it is injected but there will be areas that still need to be released and that is where NA is a good followup procedure. Adding the NA to the manipulation of the hand the day after the Xiaflex injections adds only minutes of time and no additional cost.

Trick is finding a doctor with experience with both Xiaflex and NA. When Xiaflex was first approved for use by the public I contacted the doctors on the Xiaflex list and hoped to find someone closer than Dr. Denkler. Only 2 had any experience with NA and one was a sports medicine doctor with no experience with Dupuytren's or its treatment. I decided it was best to go to Dr. Denkler and it turned out to be the right decision even with the simple Xiaflex injections as he knew where to best make the injections and the following day was able to do the manipulation of the hand and also to perform NA where there were still problems with the hand.

NA lasted two years on average the first two times I had this done. The Xiaflex alone was done in July of 2013 on my hand with problems remaining. A second set of Xiaflex injections was done in November accompanied by the next day manipulation and NA and 4 years later my hand is still in excellent shape and there is no contracture at all.

Edited 07/27/17 19:46

thanks BrianB, bstenman and mikes for the comments. Your stories help me feel even more sure I am on the right path. Like a lot of people, I grew up thinking doctors were the final authority and that they also maintained a big picture view of my health. As I've gotten older, I've come to understand that doctors have their quirks and areas of speciality and that looking around and doing research makes a difference when you're trying to get the best care. Thank goodness for web forums like this one, so that we are not all at the mercy of a surgeon who wants to cut our hands open right away.I realize now that I am the primary person who must look out for my own health. Remember that phrase, often attributed to Reagan, trust but verify? That's me, with the different hand doctors I've seen. I really appreciate reading your stories.