Daniel’s story of living with Dupuytren’s and his various surgeries and NA
My Dupuytren started when I was born since both my parents suffered from it. I'm being facetious but when I asked one of my hand surgeons if there is a way for me to avoid Dupuytren in the future, his reply was: "Change your parents!"
I first developed Dupuytren in 1971 when I was 28 and living in Pittsburgh. There was a lump on my right index finger (between the MCP and PIP joints) but nothing in the palm. The surgeon (he was an orthopedic, not a hand surgeon) told me that it was not Dupuytren and surgically removed it. In 1972, the lump came back (still nothing in the palm), so I had another surgery with the same surgeon (growth again misdiagnosed). Within a year, it came back again (still nothing in the palm). This time, the surgeon did not know what to do with me and sent me to his partner, another orthopedic surgeon. The partner also misdiagnosed the lump and recommended a third surgery to remove it (in case the lump was malignant) and “if it comes back again,“ he said, “your finger will have to be amputated.“ This time, I decided to get another opinion and found a hand surgeon. He told me that I had Dupuytren and guaranteed me that there was no way the lump was or would become malignant. He added that I had already had too many surgeries on my finger and that I should not do anything, a piece of advice that I decided to take.
When I moved to New York in 1977, he recommended that I see Dr. Littler who was, at the time, one of the gurus of hand surgery. Dr. Littler continued the watch and wait approach until 1984 when he recommended surgery. By then, I had growth between the MCP and PIP joints as well as between the PIP and DIP joints (still nothing in the palm). My finger was bent about 60 degrees. The result of the surgery was a totally straight finger (despite it not being straight since 1973) and no recurrence. I will be eternally grateful to the Pittsburgh hand surgeon and to Dr. Littler. Unfortunately, this is not the end of my story.
Within a year of the 1984 surgery, Dupuytren decided to go after the little finger on my right hand (palm and MCP). By the time I needed to consider surgery, Dr. Littler had retired; so I went to see one of his disciples, Dr Beasley, also a top hand surgeon. He recommended a fasciectomy with a skin graft, which he performed in 1990. I have not had any recurrence since. However, Dupuytren decided now to go after my left hand.
In the 1990s, I started developing nodules and cords in the palm of my left hand (below the index and little fingers). After a few years, my little finger started bending. I play jazz/blues piano in my spare time and had recently started playing in a band. I became quite bothered by my loss of span in my left hand (could barely do a seventh). I came across the Dupuytren Society on the internet where I learned of the existence of needle aponoreurotomy (NA), an approach less invasive than surgery. I had it performed in 2007. Unfortunately, within a few months, my finger started bending again. So, I went for a fasciectomy in 2008 which almost straightened my finger and improved my hand span. While the operated little finger has been holding up, the Dupuytren on my index finger got worse and I started developing Dupuytren at the base of the thumb as well. Though my thumb is not bent, I just cannot stretch it out. I am now back to being able to play only up to a seventh on the piano.
Recently, I investigated Radiotherapy (RT) and saw a radiologist who had performed a few Dupuytren treatments. He told me that RT should only be done as a last resort because it would make any subsequent surgery, if needed, more difficult to perform. He said that he only treats Dupuytren after multiple surgeries have failed and that the treatment would have to take place at the onset of the latest reoccurrence. Clearly, I was not a candidate for him. I decided to accept his advice.
In April this year, I gave acupuncture a try. For fear of stimulating Dupuytren growth, I asked the acupuncturist not to insert any needles in the palm or fingers. After a few sessions, there appeared to be a small improvement in the hand span but, with subsequent sessions, there was no further improvement. I stopped the treatment and my span now seems to be back to where it was before the treatment started.
I saw a hand surgeon a few weeks ago. He recommended the collagenase approach but told me that my hand is not quite ready for it and that I should come back to see him in six months. So, I take his statement as good news, i.e., my hand is not bad at this stage. Unfortunately, a "not bad“ diagnosis doesn’t mean that it is not limiting my piano playing. The reduced hand span is a problem. I have to be conscious that compensating for it (through extra stretching or a different fingering) may aggravate my Dupuytren or even create new problems unrelated to it. Pianists are prone to hand injuries due to repetitive high speed movements. So, limitations due to Dupuytren could make one even more susceptible to such injuries.
In conclusion, open surgeries have been very successful for me when they were performed by top hand surgeons. However, they may have stimulated Dupuytren growth in other parts of the hand. The unpredictable recurrence issue makes it difficult to determine the right course of action. I’ve had ups, I’ve had downs but when I’m on the down side, I remind myself that it is not a life threatening disease.
August 30, 2012