I'm a seventeen-year-old female, and I was diagnosed with Dupuytren's disease on Friday by my hand surgeon. I've had a steadily growing, hard lump near the base of my left thumb for approximately two years. When my pediatrician first examined it in 2006, she said it was probably a cist which could go away on its own, but that I should see an orthopedist. My mother didn't make the appointment, as it wasn't causing me much pain (unless it was hit or force was applied to it) and the doctor had all but brushed it off. A few months back, the lump was beginning to cause me more discomfort because I could not fully extend my thumb, and if I tried, there was pain. My thumb would also twitch at times, though I'm not sure if the two occurences were related. Finally, my mother called an orthopedist to make an appointment, but they referred us to a hand surgeon instead. The surgeon identified the lump as a soft tissue mass upon examination, but assured us that it was probably not malignant. We scheduled an MRI and the surgery to have the mass removed. The MRI, curiously, showed the 'mass' to be some kind of cist, which we were told the day of my surgery. Afterwards, however, the surgeon stated adamantly that it was a tumor, and he didn't know what had happened with the MRI. My hand was in a splinted cast for two and a half weeks, with my thumb in a partially contracted position at the base joint. When I went to have the cast removed on Friday, the surgeon gave us the new diagnosis. He hadn't considered it until the pathology results had come back. He was very vague about it, and my mother and I both left somewhat confused. What I understood at the time was that it was rare for a teenager to get Dupuytren's disease and that there was about a twenty percent recurrence rate, overall. My mother found out on the way home that my family has a small history of the disease, though it hasn't been proven to be hereditary. At home, I began doing research, and what I found was a bit disturbing. Apparently, taking all my factors into account such as my age, rate of progression, location of diseased tissue, family history, etcetera, what I have is considered Dupuytren's Diathesis- a more aggressive form of the disease with a higher rate of recurrence and extension. I also found one study that showed a twenty-four percent increase in risk for cancer, and increased mortality rate in general. I haven't been able to find much information about DC in the thumb, specifically, and also I'm seeing differences in information from site to site. I'd like to know how severe my condition actually is. Will I have this disease for the rest of my life or was it just a one-time thing? Since my surgeon did not know what he was dealing with at the time of my surgery and short-term recovery, how will my continued recovery and prognosis be affected? How controllable is this disease long-term? Any answers would be greatly appreciated. Thank you.

Edited 09/07/08 08:42

Hi Jess. Australia Calling, welcome to the forum, where are you calling from?. You should not think the worst, the good news, I read was ,that you did not have a malignant tumour. Be thankfull for that. Duputrens and Ledderhose( feet) are Non Malignant disorders. I am in my late 60's and have full use of my hands and feet having had some 15 odd surgeries including 4 skin grafts. I was concerned ,that your surgeon did not identify Dupuytren's . Did you have a bi-opsy or surgery. I have never had a plaster cast . If I could give you a tip for the future ,I always get a copy of blood tests or any medical reports. You stated that both you and your mother were confused, when you left the surgeon. Not the way to go. Try and find a hand surgeon ,who is also a plastic surgeon. You mention' Dupuytren Diathesis ' and your predisposition as you posted it not that. No knuckle pads No dupuytrens in both hands nor in the feet. You could be in the 10 % where the disease never progresses. I have had and involuted nodule at the base of my middle finger ,that has not done anything for 15 years .At your stage of life, you should not allow this to effect your life. If you have dupuytrens. I believe it is very important to stretch the hand everyday and exercise.
Finally ,have a look ot the article written by LUCK .Click on the literature under Dupuytren's disease.This gives an excellent understanding of dupuytrens.I have found in life, that the more informed you are the better.
Regards from down under.

A noted hand surgeon in NYC that may be of help is Dr. Edward Athanasian at the Hospital for Special Surgery. In NJ I went to the NJ Hand Surgey at 385 Morris Avenue, Springfield,NJ . I found that the coomunication baout the disease from hand surgeons is very vague which I think is because they cannot predict the development of the disease and will tell you that to come back when you need surgery.

Neil

Hi Australia Calling,
You were probaly unlucky with your Dr. some of them are poor communicators. I must admit I went to four surgeons before I made my choice. I note Dr Pess was mentioned he and others are listed on our web page under NA-USA/Canada. Central Jersey Hand Centre. Is it a coincidence they have a Dr.G.Decker Jr.
Dont forget to exercise your fingers and apply some enriched Vit.E creme on the scar tissue to reduce restrictive movement in the future as the scar heals . I believe only about 20% of patients have DC in the thumb. We are told it starts in the little finger=not always. I have had surgery on both thumbs and skin grafts to the joint adjacent to the palm to facilitate movement. This was done after repeat surgery on the thumb.

Edited 09/13/08 05:58

!!!!!!!!!!

I just checked the Central Jersey Hand Surgery website, and, yes, that Dr. Decker is my surgeon. Like I said, I've heard he's very good, but not great at communicating with patients.

I still wonder how much of a difference it's going to make that he didn't actually perform a fasciotomy, and that my postoperative measures were carried out according to the removal of a tumor that didn't exist.

Oh, how I wish he would answer my questions.