| 27 yr old male with DC ... Really wish I found this site sooner. |
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01/11/2015 06:34
nrockwater 
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01/11/2015 06:34
nrockwater
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27 yr old male with DC ... Really wish I found this site sooner.
Hello,
I've been diagnosed with DC on my left pinky when I was about 18 yrs old. At the time i didn't think much of it because it was relatively small and plastic surgeons advised that I wait until its bigger to remove via surgery. Last time I've seen a surgeon regarding this was about 2-3 years ago and at this point they were still advising I wait.
After doing some research and finding other forms of treatment available, I can't help but feel frustrated. Why didn't they tell me about xiaflex or NA? My pinky on my left hand is bent around 90 degrees now with a thick chord starting from half way up my pinky and half way down into my palm (I attached photos). I know its best to talk to a surgeon but my appointment is probably still a couple months away ... Has anyone with a contracture as big as mine have success with treatment other then surgery? I would really like to avoid it if possible. I'm a musician like some people here on this site and I would be really sad if I ever compromised the use of my hand. 
Also I'd like to connect with anybody on here around my age who has DC to hear what their experiences were like with treatment etc.
Hope to hear from some of you.
Norm
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01/11/2015 08:17
spanishbuddha  Administrator
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01/11/2015 08:17
spanishbuddha Administrator
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Re: 27 yr old male with DC ... Really wish I found this site sooner.
Hi nrockwater
I think your choice of surgeon is important here. Best is one who has extensive experience of successfully treating DD using NA and Xiaflex and different surgical options. Then they can advise if NA or Xiaflex is suitable at this stage and for your specific condition, or the best option for you given your age. I would ask for references, ask around, they should keep records of their successes, and failures. Once you have recovered from the appropriate and selected treatment, and your hand is flat and flexible, if there are signs of recurrence consider RT. If you are doing physical hand exercises to aid recovery consider too a specific type of massage that some people claim helps.
Good luck
SB
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01/11/2015 17:02
nrockwater
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01/11/2015 17:02
nrockwater
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Re: 27 yr old male with DC ... Really wish I found this site sooner.
Hey SB,
I appreciate your advice on my current situation. This has been an eye opener for me to say the least, to stay on top of your own health because no doctor is going to do it for you. I definitely will be picky on which surgeon i chose for treatment. I'm going to call my referral too to hopefully speed up the process of getting an opinion. You've given me some hope that my hand could actually be flat again on day, and I won't be so careless with DC if it arises again.
Thanks
Norm
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01/11/2015 17:58
mikes 
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01/11/2015 17:58
mikes
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Re: 27 yr old male with DC ... Really wish I found this site sooner.
nrockwater,
For what it's worth I had a 90 degree contracted finger and had NA performed back in 2006 with a highly skilled practitioner and amazingly successful results. The finger is still fairly straight today. Warning though, not everyone with this disease experiences the same results. Recidivism rate is high. I do have other symptoms in other fingers, but they seem to be "holding" for now.
Good luck!
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01/11/2015 18:22
nrockwater
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01/11/2015 18:22
nrockwater
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Re: 27 yr old male with DC ... Really wish I found this site sooner.
Happy to hear about your success Mikes 
I know nothing is certain until i talk to someone and go through with it, but results like yours puts my mind at ease. I think the important thing is to get the history on any Doctor's past successful treatments before i decide on who to go with.
Cheers!!
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01/11/2015 20:22
yosh01 
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01/11/2015 20:22
yosh01
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Re: 27 yr old male with DC ... Really wish I found this site sooner.
My ring finger was bent just about as much as your little finger and I had NA four years ago which totally straightened it. It's slowly beginning to tighten again, but I figure I'm a good year off before seeing the hand surgeon again about a possible second NA.
I urge you to consult with a surgeon familiar with NA and Xiaflex (there's a list on this web site) since they'll likely have a special interest in Dupuytrens and be more familiar with treatment options.
Radiation therapy is something else you should become familiar with.
I play violin myself and have been surprised at how little the DC in my left hand has affected my ability to play, but then again I'm not a very accomplished player.
Good luck with your DC.
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01/12/2015 00:31
nrockwater
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01/12/2015 00:31
nrockwater
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Re: 27 yr old male with DC ... Really wish I found this site sooner.
Thanks for sharing. Its good to hear there may be a possibility for NA. I'll be checking out the doctors on this site and RA treatment as well. The more i know about Dealing with DC the better!
For me i've been having a tough time playing the guitars granted that the frets are a lot further apart from the violin
Edited 01/12/15 02:34
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01/14/2015 18:47
JohnG 
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01/14/2015 18:47
JohnG
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Re: 27 yr old male with DC ... Really wish I found this site sooner.
At 27, it would be good if you can delay the need for surgery using a less invasive treatment.
Surgery leaves scar tissue that can can complicate having surgery again on the same hand when the disease comes back.
Edited 01/14/15 20:48
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