Dupuytren’s Contracture II: Dupuytren's Revenge

[jimhines]

It’s been almost ten years since my official diagnosis of Dupuytren’s Contracture. In short, this is a disease that causes hard nodules under the skin of the hand, and one or more fingers loses the ability to straighten and gets more and more curved over time.

In October 2020, I went in for surgery to free up my right pinky, which had become decidedly claw-like. I came out of that with most (not all) of my motion back, and a cool lightning bolt-shaped scar.

Well, over the past year, I’ve noticed the ring finger of my left hand getting more bent. Last time, in part because of other life stuff, I waited long enough that the only option was surgery. This time I wanted to try to fix the problem earlier. The hope was for a less invasive treatment that would be quicker to heal.

What does that treatment involve? Brace yourself. Basically, I went in on Tuesday to get a drug (that the insurance company tried to bill me $5000 for!) injected directly into the cords and nodules in my palm. That stuff weakened the tissue. I returned today, two days later, so the surgeon could numb my hand, then bend my finger back to snap the cords that were restricting the movement.

It sounds horrific, and I admit I was freaked out. I may have postponed the procedure a few months because I hated the idea of it. But honestly, it wasn’t too bad.

The most painful parts were the injections, both the initial drug and the anesthetic that were shot into my palm. The actual snapping of the cords? I barely felt that. I heard it, and I felt the popping, but there was no pain.

I’m a big fan of no pain.

I’m not putting pictures in the blog post, because I know that sort of thing can squick people out. But if you’re curious…

• The Before Picture: That was as straight as my ring finger would go as of Monday.


• The Shot: I’ve gotten over a lot of my needle phobia, thanks to the diabetes. This still sucked.


• After the Snap: Check it out. This was a minute or two after the surgeon finished what they called the “manipulation.”


• The Splint: I get to wear this at nighttime for the next six months to keep the finger from reverting to its bad habits.

It’s been five hours, and there’s still some numbness, along with the bruising and swelling. I’m told the pain will be coming later tonight and tomorrow. But in the meantime, I’m able to type well enough to do a blog post, and there’s no scarring or stitches or any of that.

One thing that did give me pause today: you see that little white thing taped to the window frame next to the door? Here’s a closer look. That’s a smelling salts packet. You know, in case the patient passes out.

I asked about that, and the surgeon said it most often comes up when they’re removing stitches. I’m happy to say I didn’t pass out or go into shock. I also didn’t look while he was manipulating the finger, and I’m okay with that.

Typing may be limited for the next couple of days, depending on pain and swelling. But so far, I’m happy with the results. And since this condition tends to keep coming back, I’ll probably be doing it again for other fingers at some point in the future.

Just don’t high five me on the left side for a few weeks, okay?

Comments

[camobscura]

David McCallum has Dupuytren's iirc. He's had a couple of surgeries. Didn't want to give up playing the oboe. (Which is the profession his parents chose for him. I'm glad he felt differently.)

Anyway, yeah there'll be some ugly pain, swelling, and bruising, I've no doubt. Just keep remembering how much better you'll be doing in 6 weeks. Is there some sort of at-home PT you can do to slow the onset of another round?

[jimhines]

Unfortunately, there's not much to be done to stave it off. But the right ring finger has only lost about five degrees, so I'm hoping I'll have at least a few years before I have to do the next round.

[camobscura]

I'm just glad it's ring fingers and pinkies so far. Indexes and thumbs would be far more difficult to live with.

[synecdochic]

Fellow Dupytren's haver here (fourth generation, even): do you/your doctors know about the radiotherapy treatment? If you've already been evaluated for RT and it's not an option for you, please ignore, but the form I have in the family is the extremely aggressive form (my mom went from first small nodules to full contracture of 3 fingers in about 3 years) and I had the RT done at the first sign of small nodules back in 2017 and it froze the progression in 7/8 of the fingers. (I need to go back to the guy who did it for me and see if we can retreat just the one finger.)

I think you can still do RT after Xiaflex injections, and if you're a candidate for it, the long-term prognosis is excellent in terms of it slowing or stopping the advancement. The list of who has training in the technique is a little out of date, but a possible start. (I looked up the university clinic listed in MI and from their website, I don't think they do RT for Dupuytren's anymore, unfortunately. I went to Dr Gopal Bajaj at Inova Fairfax in VA and it involved travel for me but it was very worth it.)

[jimhines]

Thank you - I'll need to look into that for the next round!

[synecdochic]

You're welcome! The technique was developed in Switzerland and there are clinics for it in Switzerland and Germany; it's only made it over here in the last decade or so, which is why it's so hard to find specialists trained in it, but it works incredibly well, and it can even be helpful in the later stages (the later you get it, the less it will stop the progress, but it's still highly likely to slow it down, especially if you have the early-onset version like both of us do). I'd been following the clinics in Europe who did it because I knew I was at high risk, and was so glad I could go to Virginia instead of Switzerland to have it done, especially since my mom tried Xiaflex and had a terrible reaction to it so it's likely I will too :/

Did you luck out and get the feet, too? I swear the feet are like a billion times more painful than the hands, for me.

[jimhines]

No issues with the feet so far. Fingers crossed!

Hope you're able to keep avoiding the Xiaflex!

[synecdochic]

Thank you! I hope it works for you for a long time!

[laurenthemself]

Yowza! I'm glad there was a less invasive option than surgery, but that's still so intense!

[pameladean]

Wow, that is really a lot! I hope the outcome is excellent and lasts a long time.

P.

[thewayne]

Your pinky has a lightning scar?

The Pinky That Lived! It's going off to a school of witchcraft and wizardry and have all sorts of amazing adventures!

[thewayne]

(sorry, wrong level reply!) :-)

[jimhines]

Since Rowling has gone off on her transphobic nonsense, I've been saying it's from things like high-fiving Thor :-)