I'm writing because I was just diagnosed yesterday with Dupuytren's and was pretty anxious about it all. The night before I googled lump in hand thinking it was just some normal fatty deposit or something; then I found out about this condition. That set me into a lot of anxiety. I'm 36 year old and type 1 diabetic. At first I read that people who get it under 50 years old get the more aggressive type which is what made me so scared. Last night though I read people who have diabetes get it at a younger age and it generally is milder with less need for surgery. I was wondering if that was true in anyones situation? Any reassurance would be appreciated. I guess I get nervous because I'm a big video gamer and the thought of not being able to play anymore or type at work scares me.
Welcome to our family Mike. I’m not sure there is a normal that applies to everyone. It’s true most people never get a contracture, but that doesn’t account for age or other predisposing conditions. Some people are able to live and manage quite well with a contracture, or varying degrees but that is an individual response and probably depends on what they do or don’t do with their hands for a living or hobby. etc.
There are options. Be prepared, start a log or record of symptoms with photos, so you can objectively track progress. Find out about RT, and see or establish a dialogue with a radiologist who can advise on your suitability for treatment, now or in the future given your other health issues. Find out which Dr you would choose to have NA or Xiaflex should you need it. Talk to them. Get these things ready, review other risk factors and see if you can change any of them if they affect you, then sit back, take a bit more care of your hands then perhaps you did before, and hopefully you’ll fall into the category of never needing treatment. But if you do you’re ready to go
I myself developed Dupuytren's at the age of 35. That's not completely unusual https://www.dupuytren-online.info/patient_survey.html although the average age is higher, at 46. There is a variety of treatments available to keep progress of Dupuytren's at bay, so no need to panic. I am now alreaqdy 70 and I am still typing. But maybe you can consider this disease as an indication to reduce your video gaming? That might open new doors for you and for more fun in life!
My dad had Dupuytren's contracture, but never had to have surgery or any treatment. If you have the milder version, like my dad had, you may not need to do anything. You hand won't look pretty, but it can still be functional. On the other hand, if you have an aggressive form, like I have, you may need to have surgery or Xiaflex injections. I had hand surgery 18 years ago on my right hand. It looks normal and is fully functional. Unfortunately, our health care system went to pot and I had to wait 18 years to get my left hand done. I have just completed the Xiaflex injections and physical therapy, but because I had to wait so long, my left pinkie is at a 45 degree angle. I can still use the keyboard, but playing the piano is difficult.
Investigate various treatments. I didn't even know about radiology as a treatment until I came to this forum. That's about as non-invasive as you can get. Keep talking to your doctors and then figure out what treatment is best for your situation. Your doctors will take measurements to determine the degree of contracture of your fingers and you'll be able to figure out how aggressive it is over time. There is an optimal time to do the treatments and it differs by treatment.
I hope all goes well for you. This is a good place to discuss your concerns.
Thanks for the advice so far. I'm sure its just the shock of the first few days that make me so anxious. I was wondering, I've been probably over analyzing my hand now and noticed two bumps on the side of my index finger on the hand that I have the nodule on. Does Dupuytren's ever cause nodules to appear on the sides of the fingers themselves? Thank you!
MikeT298:Thanks for the advice so far. I'm sure its just the shock of the first few days that make me so anxious. I was wondering, I've been probably over analyzing my hand now and noticed two bumps on the side of my index finger on the hand that I have the nodule on. Does Dupuytren's ever cause nodules to appear on the sides of the fingers themselves? Thank you!
You can get nodules on the sides of the fingers, more rarely than palm side, also on top of the finger joints (Garrods pads), but this doesn’t mean your bumps are DD nodules.
Just thought I would leave an update. I was seen yesterday by a hand surgon at Beth Israel Deaconnes Hospital in Boston, and he is not convinced I have Dupuytrens disease. Instead he believes I just have a palmar fibroma. It seems similar to Dupuytrens but he said something about fibroblasts which i didn't understand but he doesn't think its anything to worry about and just monitor it. Hopefully I'm in the clear. but wanted to thank everyone who replied to me!
I noticed Dupuytren's in my right hand in my mid thirties. It did not do too much 'till my mid-forties. In my late thirties, I had gone to a hand surgeon and he told me just to wait 'till it gets bad enough to get surgery. He discounted RT at that time saying it was new and unproven. Between age 42 and 45 it started progressing more rapidly. I finally got RT done by Dr. James Hayman at the University of Michigan at age 45. At age 50, I had noticed lumps in my left hand, and so I got RT in my left hand, and a second dosage in my right hand as it seemed to be progressing very slowly.
I like RT because 1.) It seems to have actually worked! and 2.) It leaves me more options in the future for other treatments if the RT doesn't hold out. My doctor said there really is no prescribed guidelines for a third treatment- so I may not have RT options in the future.
I still can play the piano with some reduction in my ability to play the melody - and I can only reach an octave and one note, whereas I used to be able to reach an octave and two notes. There is some pain in the hand when flexing, but I can almost press it flat on a countertop. The left hand is really not effective. RT ROCKS!
I really believe that if the hand surgeon had sent me on to RT when I was in my thirties, I would have no effect on the right hand. The key to RT is get it done in the early stages! You have a huge advantage here in early detection.
Living in Michigan it is important that I keep my right hand in good shape as the shape of my hand matches the shape of Michigan - When people ask where you live you can hold your hand out and point to where you live.
Attached is a photo of my right hand at age 50 just before getting the second RT dosage. You can see the markins for where they placed the RT beam.
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