Duped

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Dupuytren's Contracture ripples the palms and ultimately cripples the hands. Mine was first diagnosed 20 years ago in New Delhi, shortly after a torn rotator cuff set off a frozen shoulder. My ancestry is Scots-Irish and German, but no other immediate family members have Dupuytren’s contracture.  Pain in my hands was negligible for many years, although when I hit age 63 I started to suffer frequent itching, hot spots, neuropathy and numbness in my digits. Carpal tunnel syndrome too. Once my right ring finger swelled up so suddenly that a jeweler had to snip off my ring. There were pressure sores where it had been. Lately I am literally losing my grip. Can't do a proper pushup, and the contracture seems to be speeding up. In just three weeks the cords in my fingers of both hands grew harder and denser. My right pinky does not lie flat on a tabletop. Tightness is a constant and I obsess about my claw like hands. Will a medical intervention start me on a spiral of pain and scarring? I wonder if a Xiaflex i

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Got it done on August 5, 2015. Ouch. Xiaflex is strong stuff (Or as the doctor says, the enzyme elicits a powerful reaction from the immune system). There was no anesthesia --because that lessens the effect of the enzyme, my doctor explained. The three jabs  hurt like jellyfish stings Was told to keep my hand elevated until bedtime, but there was plenty of swelling anyhow. Felt like a baseball mitt. Throughout the week, there were unpredictable, curse-inducing moments of stinging pain  (especially when wiggled my fingers while shampooing!) My doctor confirmed that trauma can cause Dupuytren’s to flare, and mentioned that one patient discovered her first Dups nodule several weeks after an injury that required surgery. 

 

My doctor performed the post-xiaflex manipulation one week after the shot in the cord. He numbed me up with lidocaine at my insistence. That shot was excruciating. After two resounding cracks, my 55 degree contracture is back to normal. See the before and after pix. Third photo is the nodule map drawn by my oncologist for RT . My zap map. Feeling very hopeful!

 

Arranged for Radiation therapy after a Xiaflex shot. (One week afterward, on Aug 12, my doc snapped the cord in my right pinky. Immediately I was able to lie it flat it on a tabletop! That same day I went to  Dr Chang, my radiation oncologist , about 45 minutes away, and got molds fitted for both hands, because Dups is flaring in both palms. The idea is to prevent recontracture in the pinky and halt progress of the nodules. Had treatment Thurs & Fri. They zapped me beneath a 1 cm thick packet of "super flab" that prevented the radiation from going too deep. There's a weekend pause. Recommence on Mon, Tues , Wed. I asked the radiologist about the 2-day break, and he said it would not effect the outcome. Actually relieved to have a respite. Am also doing Physical therapy -gentle exercises, a customized night splint, and alternating "contrast baths" for swelling & flexibility.

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Aug 26  2015  Completed the first round of RT.  Feeling some aftersizzle in the three areas where they zapped me.  My doc explained that for at least 2 weeks the radiation therapy would cause a series of changes- singling out the mutated genes in the collagen gone amuck.  It’s hard to predict. I imagine that I see dimples and puckers in my palm as the radiation does its stuff. The enzyme shot dissolved some of the cord , but the nodule around the MCP joint remains on my right hand. I think it already is softer (from hard coconut to tennis ball?) and it appears to be a little smaller. 

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Sept 9, 2015

Went to my followup with the certified hand surgeon today. It’s been two weeks since the first round of Radiation therapy was finished and almost a month since the snap. Our ten minute consultation was a little anticlimactic. I showed him my “before” photos on my laptop, hoping that he would be impressed by the changes he could see today in my left hand, which was treated only with Radiation. But no comment. Then I asked him to indicate exactly where my nodules and cords are and handed him an uncapped sharpie pen to draw right on both my palms. He palpitated both hands and told me that they were riddled with lumps and cords. ""Where the skin adheres in places it shouldn’t - those lumps are Dupuytren’s!” He said no one knows my hand better than I do, and that I needn’t monitor it so obsessively. I reminded him that we needed to figure out when the disease was active again in order to schedule the second round of RT. He recapped my pen and handed it back. (I suspect that this might have to do with liability insurance and the fact that he is very dubious about Radiation therapy for benign consitions.)  Then the doctor finally did touch each of my various nodules and I drew around them myself in the parking lot as best as I could.  "Come back when it contracts enough for another xiaflex shot,” the surgeon advised.”It’s likely to recontract."  We shook hands. Sigh.