Hi all!

I was recently (March 23) diagnosed with DC. I am attempting to figure out what to do for treatment, if any. This site is a blessing. The hand specialist I saw only discussed surgery as an option and that was only if I wanted it. His attitude was surgery is the only option and I am relieved to see that is not the case. I live in North Carolina, USA and am wondering if anyone has any feedback about radiation at the Virginia Commonwealth Univ. or the NA at Duke. I have a small lump on my right hand that is about 2 inches below my middle finger and am developing a cord from that lump to my wrist. This has developed for the last 6 months. I thought is was a callus until the cord developed. I do have pain in my shoulder and excessive use of the hand makes it ache. I am right handed and scared to death about what to do. I am 53 years old, female and very active. Reading the imput from others I am at a loss as to how to proceed or where to go. Should I wait and do nothing, or is there someone, anywhere or in any country, who is a specialist that I can see who can evaluate my symptoms and give some direction? Reading the journey of others reassures but scares me for my future. If I wait to see if it gets worse and do nothing will my options for other treatments go away so that surgery is the only option. I was so relieved to see a site that I could communicate with others about this condition, it calmed my fears down a little. The hand specialist was no help at all. I requested several times for a referral and/or other treatments and he was either unwilling or unable to do either.

By the way I was reading about others who have pain. I have an electric heated mattress pad that works wonders for that ache in my hand and shoulder. It goes away at night with all that warmth.

Thanks to all of you for your imput.

Lori

Hi,

Thank you for respsonding, I was so afraid no one would. I live in the Lake Norman area near Charlotte, that is why I was curious to see if anyone had been treated in Virginia or at Duke. I don't know anyone who has DC, and when I ask friends etc.. they don't know what I am talking about. Of course, I didn't either until recently.

I understand the mullling it over and over, I finally had a good night sleep after sending the request to the forum. I believe I mentally put my fate in the forums hands (so to speak) and finally relaxed.

On your research about RT did you find any information about long or short term side effects? It sounds like the NA works best on people who have contracture or is it for people like me who just have a bump and cord? I don't have contracture. The hand speacialist said it might never get to that. Is he dreaming or am I? I only have the beginning of DC and from what I can read it looks like RT might be the first step. My dilemma is, is it better to leave it alone until it progresses or not?

Thank you for the information and email address. I will take your advice and email Dr. Denkler. As my husband said if it involves travel that is what frequent flyer points are for.

I will keep you posted.

Lori

Wolfgang,

Thank you for your information. I have printed yours and flojo site recommendations. Lots of good information. I will continue to research, believe me.

Lori

Australia Calling, Hi Lori.
Being newly diagnosed with dups. ,I would recommend you read the literature under "Dupuytren Disease" 5th para written by "Luck", which is still relevant today . This will broaden your horizon on the disease. With regards to Radiotherapy it works best in the early stage before contraction. The idea is to stop the progression. It could be you may be lucky and there is no progression. It is a catch 22 . Monitor and record what is happening for future reference. However, it is an advantage to understand all about ,what options are available and should you choose RT, that you are fully informed. Read the Literature Radiation therapy-"Side Efects.""Estimated Risk of Cancer" At 53 yr the risk is very low and the dose rate is also low not like in the treatment of cancer. Prof. Seegenschmiedt recently gave permission for members of the forum to obtain a pdf of his paper Clinical Investigation using RT in the treatment of the early stages of Dupuytren. Under Literature -Radiation therapy para starting -"full text' (heavy type) there is a link to Dupuytren Society to obtain a copy. Finally I've had RT and did not notice any dryness of the skin as some patients have reported. Regards.

Hi,
Here is a post I left in Nov of 2008. Today unless you really look at my hand it would be hard to tell I had DC. It currently is at about 9 degrees becuase of the lenght of time it was at 90 degrees. I wouldn't hesitate to see any of the great doctors mentioned in this forum. I do like the Bay Area can't beat the wine country and food.

Little finger stage III NA Dr Denkler Larkspur
I had severe stage III dupuytrens on my left little finger with PIP joint bend of 90 degrees. On Nov 7th I flew to Dr. Denklers office in Larkspur after canceling an appointment with a surgeon in Tacoma, WA that my insurance company required me to do prior to authorizing an out of network procedure at Dr Denklers. This surgeon convinced me that because of the 90 degree bend there was a better than 50% chance NA would tear the nerve so I made an appointment for surgery to be done on Nov 14th. This surgeon advertises that he performs NA that is why my insurance sent me to him I have now found out he has never done NA or been trained, my conclusion is just get them in the door to scare them into surgery.
Below is part of an email I sent to Dr. Denkler today.
Hi,
Just wanted to let you know it is Sunday morning at 10:00 am just removed the splint from my little finger and couldn’t be any happier with what I saw. There is very little swelling and it moves I actually can close and open the finger this really surprised me that I have enough strength with the pip joint being frozen for 5 plus years that I can open and move the finger I wasn’t expecting this without therapy. The motion is limited right now but in time with therapy am hoping to gain almost full motion. There is some pain in the joint but not as bad as I expected. I would say the biggest down side to NA at your office was the traffic to Oakland Airport at 6:00 pm on a Friday evening. Again I really want to thank you and your staff for everything it seems strange but I really enjoyed the experience especially considering the alternative with surgery.

I just stumbled across this site about 2 months ago looking for an alternative or something to surgery. I also had dupuytrens 18 years ago on my right little finger after 2 operations a cast, pinned joint and 2 months of therapy did not want to go through it again. Thanks to everyone posting on this site I can sit here 52 hours after NA typing this post able to pick up a Vitamin Water with all 5 fingers NO Pain.