Dupuytren's Disease Thread



  • Both my then wife and I developed Dupuytren's syndrome about 30 years ago. She had surgery, which fixed it for her. I just kept stretching that little finger backwards several times a day and, 30 years on, it's still fine. Won't quite straighten, but no problems.



  • @David-Harris said in Charitable Giving - Dupuytren's Foundation:

    Both my then wife and I developed Dupuytren's syndrome about 30 years ago. She had surgery, which fixed it for her. I just kept stretching that little finger backwards several times a day and, 30 years on, it's still fine. Won't quite straighten, but no problems.

    Luck you. Seriously. Mild, minimally aggressive form and minimal negative impact. Alas, some of us are not so lucky.

    IMG_6956dup04.jpg

    IMG_6954dup01.jpg

    IMG_6955dup02.jpg

    Took a hard fall onto concrete a couple months back and activated the "rapid healing" gene. Maybe a selective advantage for Vikings of yore injured during rape and pillage raids since they typically did not live long enough for the contractures to hit before departing for Valhalla. Now I'm looking at some nodules in my pinky as well. Boo hiss!!

    Middle finger has been operated on previously - you can see the "Z" incision scar if you look closely - but genes are genes so only temporary fix. The bar for a "successful outcome" is to not need another operation on same finger for five years. Something like half meet that bar. The operation stimulated the "rapid healing" gene and re-contracture began soon thereafter, spreading to involve index and ring, which are in queue for another fasciotomy.

    Had a better outcome with my right ring finger which at the time was in far worse shape than the left middle. Fasciotomy basically involves making a "Z" incision, filleting back the skin, and then painstakenly removing the offending fascia before stiching things back up. Hopefully without nicking any nerves. And hopefully with minimal resulting scar tissue, which negatively impacts outcomes of future fasciotomies.

    A Cpuple Pics From My First Surgery about five years ago:

    20160424_0001dupzcut.jpg

    Then they put a pin in the knuckle joint to keep from returning to the "memory position" and hold the finger straight for a couple weeks. This is undesirable from my experience because that joint will then be forever stiff, comparatively. Probably going to need some pins in my left thanks to Covid pushing non life threatening procedures to the back of the line the past few months. No space at the inn, so to speak. Local hospital also just repurposed another out patient operating room to Covid, leaving only one for non Covid stuff like heart surgeries. Hopefully I don't get bumped.

    20160424_0003duprpin.jpg

    Present day. Made it five years on this one. Still doing well on the right hand. Minimal recurrence. The scar on the index is from an industrial accident during college summer job and not Dupuytren's related, even though it has similar angles.

    IMG_6959duprightring.jpg

    Yeah, I have it in my feet too (Ledderhose Disease). Dupuytren's is not going to kill you but it sure can mess with your quality of life. I am a private person when it comes to the 'Net and have a lot of insecurities about posting this - I'll never be hired again - but at least now you know why I'm a "gaper". I'd otherwise envisioned craggin', hiking & backpacking on into my sixties and seventies.

    TMI??



  • Ledderhose? I wonder how that name got chosen...

    That long cut.... jeezus! That looks like something I'd definitely need to be knocked out for, and a mitt over my hand to keep me from seeing it until the cut was completely healed over.



  • @toby Shit!

    Yeah, given what you've said, I guess I am thankful to be lucky. One very slightly curved pinky that, even after almost 35 years, doesn't interfere with anything.

    Sorry to hear about your struggles with it.



  • Haven't heard from the Boss Man and suspected something...Sorry for the pain. Hang tough.



  • @LynneLeicht Yeah, easy for me to say. Sorry. My prayers are with you, Friend. Did you get the El Cap T shirt?



  • @LynneLeicht I aslo have inherited the Norwegian Claw and worse on my right hand, my picking, strumming hand. And like many, fortunate to not have severe condition ala Toby.

    Left hand just started to get tiny knots but much smaller than right hand and hope it stays that way as my left hand does all the intricate guitar and ukelele patterns chord shapes.

    @toby hope you heal up well and get a happier new year



  • @Alfalfa Thank ye', thank ye'. Appreciated.

    Forking this discussion off from the Duputren's Foundation plug...errrmm.... "Announcement".

    Seventeen days post op. Long rows to hoe on the rehab yet. Maybe I'll post up some pics. Maybe not.

    Have a groovy day, eh? 🐕



  • Decided to post up some pics for inquiring minds that may be curious about such things.

    Three Days After Surgery

    I was supposed to remove this cast one day sooner but felt like I wanted to give it until the next morning.

    IMG_7018dupcast.jpg

    Removing the cast with bated breath for the moment of truth....

    IMG_7019dupcastremove.jpg

    To reveal yet more gauze:

    IMG_7021dupgauze1.jpg

    And some iodine gauze tape:

    IMG_7032dupiodinegauze.jpg

    Decided to call that good for the time being, as I did not want to be pulling on the stitches underneath.



  • So many things can go "wrong"

    Life's been good to me so far?

    Hand_wise

    I sliced me ulnar nerve with an exacto knife

    Elected no surgery

    Hand has returned to just about completely normal

    If only I could play the dobro

    I would be happy as cake and pie

    🦋



  • @zBrown Heh.... cool beans for Z brown, mon!

    I have had a couple folks with Dupuytren's inquire. There is much mis/disinformation out there. Disconcerting and confusing to get sussed out. Recovery from a fasciectomy and Z-plasty is a long road. Easy to become discouraged. I have been dealing w/this curse for decades and decided to share experiences as a sort of public service in hopes it may be of benefit to others. Not fishing for any sympathy, etc. The pics above are early. I am doing well. Typing with two hands is a ways out yet and tedious so I'm getting to it bit by bit.

    Picture worth thousands of words so I decided to post up my recovery timeline, albeit belatedly, for obvious reasons. I'll supplement with more narrative as time and keyboarding ability progresses. 🖖



  • I have encountered some disconcerting medical histories of late. I really am pretty lucky it seems.

    ⚡️💪🏿



  • Z-Plasty Stitches

    IMG_7060dupstitch00.jpg

    The ink lines are the surgeon's "maps". We had hoped to have had time to do the index as well but alas... Covid is complicating operating room and surgeon availability. Bad timing to have to have had this done. Woulda', shoulda' had went ahead w/it last April but I was naively hoping Covid would have been handled more intelligently. By the time Fall rolled around, we had to push to January for availability. During which time my Dupuytrens genes were "active" and ratcheted my ring PIP down fairly dramatically. Took three or four years to get a quarter to third as bad as it was in those pics up thread and only a few months to loose double/triple that much motion/exteension. Sucks because this is a pretty invasive procedure requiring significant healing and therapy time. Now I'll have to go thru this again in a few to several months, depending on how quickly that index finger decides to go rogue on me.

    When I came to from anesthesia I noted that he'd also mapped out my thumb. Preview of bad news rising? I think more just planning ahead, just in case, so as to not overlap scar tissue if/when necessary.

    IMG_7063dupstitches0.jpg

    One may observe a fair bit of bruising in these shots. Also swelling, much of which is edema, but some of which is result of "rapid healing" gene being provoked by the surgery and laying down new 'chit, particularly between the "webs" of index, middle, and ring fingers. Previously pinky was not involved, but maybe getting the start of some there. Definitely provoked arthritis in my pinky pip joint, which is at present the most recalcitrant to respond to therapy. That's okay, it will eventually subside in a few months.

    IMG_7066dupstitch05.jpg

    Not too encouraging results: ring finger is already ratcheting back down. It will improve with therapy later. Stitches need to come out before you can start any of that lest you risk tearing. Does not look like a "success" - but ya' got to remain optimistic.

    🐕



  • @toby holy cow! Hopeful that improves. Mine remains very minor and only hurts when I try to force finger straight.
    Rather than throw Nita under the bus I should say that I probably shouldn’t have followed her on her bicycle on a minor downhill that ended in hard packed dirt covered in cypress cones. Oh, I was on my skateboard and had my first wipeout in 40 years! The good part was I fell on dirt rather than concrete and my Dypuytren finger got yanked back pretty hard and it really hurt but noticed it is much straighter now.
    Your mileage may vary.



  • @Alfalfa I should mention that things involving vibration and/or resulting in lateral movements of skin and fascia, e.g. riding a Harley, orbital sanders, seem to stimulate the gene to go active. Also stuff that involves "arrival shock", motion as seemingly minimal as keyboarding if you are one of those who pound their keyboards. Anectdotal evidence, all, but that is about all we have on this since it has never been life threatening or a big dollar profit opportunity for big pharma. Thus, most information is anectdotal "stories" from those of us so cursed. As a consequence, there is also much misinformation out there and some outright disinformation.

    Mine has improved over the early photos above. I'm lagging on catching up on the progress. I am beginning to try to type with both hands, although left ring in particular is still giving me cause for pause. I'll try to add some updates here next day or two.

    Lots I can share about this but need to get organized. In meantime, mild stretching can be beneficial. Hard stretching, like maybe enough to be painful, may provoke further. Like many things in life, moderation is the key.



  • Stitches Out

    A couple more pics. These are from about three weeks post surgery. Stitches were removed in two sessions about a week apart several days prior to me getting around to taking these shots.

    IMG_7078dupnosticth0.jpg

    IMG_7079dupnostitch01.jpg

    I've not started any physical therapy in earnest at this point due to the thick scabbing over the ring palm area and some splits. Fingers are pretty bent at the PIP. We'll deal w/the flexion later. Edema does not appear too bad in these shots. Although I would be remiss to not note that healing seems to be going more slowly this time around. Biology? Older and body not as good at healing as it used to be? This procedure was also more invasive: 1) two fingers rather than one, and 2) waited too long due to Covid Pandemic issues? Tossin' darts blind folded.

    I'll update some with some more complimentary verbiage as keyboarding dexterity improves. Last few days I have been trying to use both hands again. Challenging but time to start exercising them in small doses. I'm pretty attuned to arrival shock and utilize keyboards that do not require full bottoming out in order to activate. I continue to experience numbness and tingling in the tips of my middle and ring fingers. Especially the ring finger. High error rates. Ditto once more for the ring finger. As benchmark: I am a touch typist and don't need to look at the keyboard, so long ways to go. Arthritis flare up in pinky is subsiding but still got a ways to go on that front.



  • Happy to hear things are trending toward getting better for the two youse guys!



  • @Alfalfa

    Slow down
    You move too fast
    Ya got to make
    Your mornings last


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