“Oh! I see you have Dupuytren's,” said the old man to me as he stared curiously at my left hand. He took my hand and turned it over, revealing my lumpy palm. “Lay your hand flat on the table,” Frank ordered. My hand would not cooperate. It lay there like a poorly formed catcher's mitt. Frank was a revered psychology professor at a well known university and my former girlfriend's step dad. A distinguished, bespectacled gent with a small pointed goatee, he had the proclivity to talk incessantly and to know everything about anything. Typically, though I didn't always want to admit it, he was correct. And in my case, he'd identified an issue that was of growing concern to me.
“What's that?” I asked, knowing I would get a thorough, in-depth lecture about the disorder, its history, treatments, etc. and indeed I did. Named after a 17th century Dutch physician who is credited with its 'discovery', Dupuytren's Contracture as it is known, is a genetic disorder primarily afflicting the hands, sometimes feet and, rarely, the penis(!), of middle-aged men of northern European descent. Yes, women can have it, but statistically few do. It is a gradual buildup of collagen in the palms of the hand that produces thick, lumpy pads constellating around the knuckles of primarily the ring and little fingers, although sometimes other fingers can be affected. Eventually, this excess collagen adheres to the tendons of the afflicted fingers and causes them to contract inconveniently towards the palm. As I was to experience over time, this creates a real impediment to a whole lot of things I had been accustomed to doing. I was also told that I would not enjoy the treatment options available. Sadly, the Prof was right about that, too.
As I was to discover, my descent into Dupuytren's hell was fairly typical, except . . . my voyage would take longer. Much longer.
Prior to the 2008 revelation provided me by the Professor when I was 58, I'd noticed since my late 30s that the palms of my hands would itch. “Ah, you're gonna come into some money!” was the typical response by anyone who would see me scratching my palms. If that had been the case, I certainly should have been rollin' in dough. Though the periodic itching drove me to distraction, I could not see any rash, allergen or abrasion that would cause it. As time went on, I noticed that there were two or
three little puckered 'dimples' on each palm; the itching seemed to emanate from them. “What the hell?” was all I could come up with to assess the situation. My response was to scratch it when it itched and ignore it when it didn't. It never occurred to me to discuss this with my doctor when I'd have my annual physical. I mean, I wasn't actively dying or anything.
This oblivious rationale continued to suffice for several more years as I observed the dimples transform into small, itchy pits, and what I thought were callouses had begun to form over the knuckles of my ring and pinky fingers - mostly on my left hand. I simply assumed that my left-hand dominance was why callouses were forming. Though I wasn't really engaged in any activity that would warrant heavy callouses, there they were. My response was typical: Just ignore it.
By the mid-2000s it became evident that whatever this weird hand thing was, it was not going away. In fact it continued to transmogrify my hand's appearance and functioning, albeit at glacial speed. While the imagined callouses continued to expand and thicken, it was becoming more evident that perhaps these were not callouses at all. As they morphed into thicker, more cushiony pads, they gave the appearance that my hand was becoming stuffed with . . . something? There was no pain, but I found myself obsessively probing, poking and massaging my palm in the hopes of shrinking the unwanted 'palm pillows'.
As a professional guitarist and percussionist, I'd become increasingly concerned that this annoyance eventually would have some deleterious impact upon my playing. I had begun to notice that it felt like there were a couple of squishy marbles between my palm and the guitar's neck, but as they weren't particularly painful, nor did they seem to make any noticeable difference in my playing, I continued to default to “just ignore it”. I did, however, observe that playing my hand drums had become somewhat uncomfortable and the occasional rim-shot would send a painful stab through my hand and up my wrist. Uh-oh.
Then the dimples appeared on my right hand palm. Fantastic. The crud was creeping.
As this progressed I noticed that the ring and pinky fingers of my left hand began to curve downward slightly towards the palm and sometimes, usually while I was asleep, a burst of pain like a quick knife slash would go through the tendons of those fingers and awaken me with a jolt. My knuckles began to swell. What the bloody hell was happening to my hands!? It was around this time that I got 'diagnosed' by the Professor who had observed the increasing curvature of my fingers.
For the next few years, the palm pads expanded, growing thicker, and my fingers continued to contract. I had researched Dupuytren's Contracture - also known as “the Viking disease” as lore seemed to indicate it was rather common with this bunch - and I learned that the palm pads were actually collagen-filled nodules. That's all good if one wants enhanced breasts or the puffy lip look, but the collagen proteins were now creating a sheath around my finger tendons and causing them to contract. Barring the intermittent nocturnal slicing pain in my hand, I opted not to engage in the current treatment options though I did schedule a consultation with a well known hand surgeon, Dr. Michael Nancolis, who informed me that there were three options available: 1) Do nothing, 2) a needlectomy – a procedure which would involve several weeks of uncomfortable injections that would relieve the contracture but not remove the pads, or 3) surgery, which promised to be painful and would involve a protracted, perhaps year-long, recovery period, but whose results would be more long-lasting. All options held no guaranteed results.
How would I continue to play music, or create in my woodworking shop where I'd begun making cigar
box guitars if my hand was “out of commission” for months? Or possibly years?
Somewhere in 2018, whatever process was driving this Dupuytren's thing was picking up momentum and things began to worsen precipitously for me. I was actually - impaired! I could no longer wear a glove on my left hand. I could barely put on or take off my car's seatbelt without excessive gyrations. Putting my hand through a sleeve without snagging was next to impossible. More importantly, I could not reach chordal positions on my guitar that were once staple for my style; my flexibility and span were seriously compromised. Playing the piano was completely verboten. I could no longer hold a pen properly and typing became an impossible, nearly apoplectic experience as my fingers would not, could not, go where intended. I couldn't ride my bike or motorcycle very far without pain. My lawnmower's vibration was most unpleasant. My hand drumming had ceased to be.
Stubbornly, I continued to resist treatment options 2 and 3. Instead, I expended more time developing my cigar box guitar playing as that entailed wearing a slide on only one finger and required no dexterity from the others. I'd simply jam my deformed pinky into that small chromium tube and groove away. I learned a lot of new stuff, explored virgin musical territory and was really enjoying myself. Until . . .
One day I was in my woodworking shop creating a new instrument. While putting a piece of mahogany on its way to becoming a new instrument neck through my jointer-planer, my left hand, unable to properly grip the guide holding the wood as it passed over the rapidly rotating drum of razor- sharp blades, slipped and the nascent neck went careening across the room and smashed into the wall with tremendous impact, denting the wall and ruining the wood. Well, now, that was frightening!
The time had come. Though it had been a few years since my initial surgical consultation, Dr. Nancolis remembered me: “Oh, the guitarist. I wondered if you'd return.” We set up another consultation and he concurred that surgery was now the best, if not only, option. He observed that my case was quite unusual as my Dupuytren's process since its initial inception was, in his words, “remarkably slow”; most cases were far more rapidly developing. He theorized that the disease process' slow pace could be attributed to the routine hand involvement with my guitars and woodworking hand tools. I did not tell him about the planer incident. Additionally, the COVID 19 virus had become a raging pandemic at this time and all my scheduled performances had been cancelled. Venues were shuttering everywhere. Indeed, it seemed the entire world was impacted and closing up shop. Who knew when anyone could return to 'normal'. I wagered that this would be the optimum time for me to be 'out of commission'. We scheduled surgery for July 2020.
On the appointed day, I went under the knife. When I awoke, my hand was heavily bandaged, but it did not hurt. Dr. Nancolis assured me that the procedure had gone well. A Y-shaped incision stretching from mid-palm up through both the ring and pinky fingers had been made; the collagen deposits on the tendons removed, and most of the heavy pads had been excised. The wound was then sutured, bandaged and splinted. I was told to take Tylenol for pain. That does not work for me and I wondered how I'd do after the anesthesia wore off. For several hours there was no problem. Then, YOWZAH! Welcome to Post-op Pain City! Ice and ibuprophen became my new best friends for weeks.
For several days I had to change the dressings – gross! - and at night I had to wear a cumbersome splint that kept my fingers extended and me awake. In the second week I began physical therapy twice a week with a wonderful, good-humored PT named Lynn who massaged and ultra-sounded the wound into eventual submission. I was told I could begin playing the guitar a few minutes each day but not to
overdo it. I followed protocol – mostly – and after almost four months of this, I was nearly as good as new. Except for the rather sizable, ugly and sometimes painful scar, I had regained nearly full range of motion, flexibility and span. I could “hit all the chords”. I could play keyboards, but needed to avoid playing my hand drums for a few more months. I could effortlessly manage my car seatbelt and put on a jacket. Happily, I could type again!
What's the long-view prognosis? It's now 2022, and I understand that Dupuytren's could possibly rear its ugly head again in a few years. Or not. What about those not-so-cute dimples on my right hand? Or the tiny nodule that appeared on the sole of my foot? They seem to come and go, and according to the Doc, Dupuytren's can do this and as long as they're not giving me trouble, take the advice of the Beatles and “Let It Be”. Shall do.
Would I advise treating Dupuytren's if you have it? I'm not sure. Assuming one has the insurance to pay for the procedure and ensuing physical therapy, each has to assess their own risk/benefit ratio, and determine whether you want to endure what is truly a major surgery with its inherent cost, pain and inconvenience. I'm hoping my procedure will be enduring. And I am glad I did it. Time will tell.