I have Dupuytren's Contracture Disease . How can I cope with this?

Runs in my family...so I'll be checking in to see what's new. Both of my older brothers have or soon to have surgery on hands.

Hello @dhamm, Welcome to Connect. You mentioned that Dupuytren's Contracture runs in your family and both brothers are looking at surgery. I thought I had it a few years ago but I think mine is more carpal tunnel syndrome. Here's some information you might find helpful on treatments - https://www.mayoclinic.org/diseases-conditions/dupuytrens-contracture/diagnosis-treatment/drc-20371949.

Are you having the symptoms in your hands similar to your older brothers?

Any input about treatment and what stage to begin?

Hi @ellenslight and welcome to Mayo Clinic Connect. I moved your post to a discussion about Dupuytren's Contracture so you can meet other members that have experienced similar issues like @rosemarya @capausz @lioness and @cindiwass. You might also like to read this reference info: Dupuytren's contracture - Diagnosis & Treatment: https://www.mayoclinic.org/diseases-conditions/dupuytrens-contracture/diagnosis-treatment/drc-20371949

When were you diagnosed?

@ellenslight, My husband has Dupuytren's Contracture. The 'test' for proceeding toward treatment is when you cannot place your palm flatly on a hard surface, like a desk or table top.

His first sign was when he noticed a knotlike nodule(s) on the palm and his middle finger curved inward and he couldn't straighten it. PCP referred him to local orthopedist who wanted to do surgery. My husband went to a hand specialist for a 2nd opinion. the hand specialist in 2012 advocated against surgery and administered injection Zyloflex. It produced satisfactory results.
Several years ago, his Dupuytren's has returned with the knotty tendon and slightly inward curved middle finger. The hand surgeon does not use the injection anymore, so when needed he will need surgery (unless there is another treatment). He is watching it and when he it becomes problematic, he will take the next step.

@ellenslight, What symptoms are you experiencing? Is it interfering with your hand functioning?

Thank you for connecting me to this group and all the information! Officially diagnosed last month by our orthopedic, after figuring it out myself. For 2-3 yrs I thought the inability to flatten my right hand, the nodule and the tendons were a result of an injury I sustained using my hand to break a fall! A nodule appeared on my left hand last month. My husband reminded me that my father had curved in fingers and I looked up the possibilities. I can’t flatten my left hand either now. Saw a hand specialist and now considering the enzyme treatment. Any thoughts on that? Also realized I’ve been ignoring , or maybe denying?, all the problems! Opening jars, grasping dishes, doorknobs, spray bottles, even ziploc bags! a lot of little things that now add up. I’m going back to specialist Thursday.

@ellenslight
If it’s Xiaflex treatment your considering I would think long and hard. I’d never have it done myself. There has been successes but overall the reviews aren’t very good.
My Dad had extremely severe contractures resulting from his quadriplegia. They cut into his palms. His surgery only mad them worse. My Mom also had contractures of her right hand. They were very painful. The overall rating of Xiaflex was 2.5. Considering how painful the injections are even with an anesthetic. Too many people ended up worse off.
Too risky for me.
If you go forward with it find someone with lots of experience in this treatment. I understand it’s extremely expensive also which may be the doctors only motivation considering the poor outcomes.
Good luck whatever you decide.
Jake

Thank you so much for your input! I’m going to see the hand specialist this week and get more details on all options. My goal is to forestall progression? Last night I posted some details to see if they made sense. I guess that was a general post? Now that I have acknowledged this problem I realize it’s limiting my actions more and more. It seems to have changed a lot in the last 6-8 months. I paint and write and I’m no where near settling down. Funny, I never considered that this kind of disease would surface.

@ellenslight My partner had Dupuytren's Contracture in both hands. He's had surgery in both hands (at Mayo Clinic) with an orthopedic hand surgeon. He feels that he waited too long before his first surgery although the outcome was quite good. He was back to playing guitar and piano. So you are on the right track here seeing an orthopedic hand specialist. Ask lots of questions including what rehab will be like after surgery. My partner saw a PT who specializes in hand rehab and he followed through on all of the recommendations. He still experiences slight contracture in one of his hands and so on occasion he wears the little finger splint that the PT made for him.

Your activities for writing and painting are important for you to continue, right? Will you please come back here and let me know what you decide to do after seeing the hand specialist this week?

I am watching contractures in both hands with my ortho, and doing stretching & massage many times a day. I have had numerous hand surgeries and know there is usually a "sweet spot " -bad enough to treat, but not too late. @naturegirl5 is right that therapy, lots of it, is key to hand surgery success.
Sue