| Newly Diagnosed with Dupuytren's |
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04/07/2013 20:57
PatJohnston6384 
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04/07/2013 20:57
PatJohnston6384
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Newly Diagnosed with Dupuytren's
I'm a 72-year old, healthy female. Four months ago nodules appeared in both palms--a whole line of them in the right hand and a very sensitive, large nodule in the left hand. I had a final diagnosis of Dupuytren's only last week. Neither orthopedic surgeon involved in the diagnosis treat DD with anything other than surgery. They told me to find treatment on my own.
I had not success finding an orthopedic surgeon who treats DD, even after calling several hand clinics in the Los Angeles area. In desperation, I finally googled "Dupuytren's studies in CA," hoping that doctors involved in DD studies would also treat DD. Three names popped up in the Southern Cal area. I called Raven Orthopaedics, INC. in Burbank, just thirty minutes from my home. Dr. Raymond Raven does treat DD! I have to wait a month before my appointment, but I am hoping for early DD intervention (something the surgeons had never heard of.)
During my prolonged search for more DD information, I found this website forum. I will bring my MRI results on a CD, plus x-rays and the results of the nerve conduction and electromyography test with me.
This forum has not only been educational. It has given me the hope that I won't have to live with aching hands for the rest of my life. Perhaps through RT? Time will tell.
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04/07/2013 21:24
callie 
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04/07/2013 21:24
callie
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Re: Newly Diagnosed with Dupuytren's
No surgeon will do (or shouldn't do) surgery on your hands at this stage. Your hands could easily not get worse for the rest of your life. At this stage RT would be your only source of relief. Does the cost create a problem for you? Insurance? I was told that Medicare would not cover RT for me.
Also, I had nodules go dormant for 12 years after they first appeared. Be thankful that Dupuytren's is a very minor disease for most people.
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04/07/2013 21:39
stephenp 
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04/07/2013 21:39
stephenp
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Re: Newly Diagnosed with Dupuytren's
The disease can slow and even be stable for years without treatment. However, if the disease continues to be active with the development of further nodules, cords etc RT is a real option before any contraction.
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04/09/2013 14:17
PatJohnston6384
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04/09/2013 14:17
PatJohnston6384
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Re: Newly Diagnosed with Dupuytren's
Really appreciate these two comments. I was also diagnosed with carpel tunnel in both hands, so I have been wearing a night brace for a few hours in the evening. I can't sleep with it, as it is too uncomfortable. But it seems to be reducing the aches in my hands.
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04/09/2013 14:48
zinkadoodle
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04/09/2013 14:48
zinkadoodle
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Re: Newly Diagnosed with Dupuytren's
After the extremely successful surgery I had for DC about 14 years ago on my left hand, I developed nodules and pitting at the base of my thumb and index finger PIP joint. I also have a cord running up my thumb. But, they have never bothered me, never contracted, nothing. So, I ignore them and will continue to do so hopefully for the rest of my life. I am 62 now. I sure wish the same lack of progression for you.
However, my right hand is the problem now, wherein I've got 35 degree contractures and cords and nodules, oh my!!! Just plain weird how this disease progresses, or not. I'm getting Xiaflex injections (multi cord clinical trial) on them on Monday, April 15. I'm kind of scared sh*tless, but I have to get this behind me, or my hand will be more severely compromised rather quickly, I'm afraid, as this has been a fairly rapid progression since this past August. So, expect a post from me in Personal Experiences next week as soon as I'm able to type. .... sigh ....
~ Diane
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04/09/2013 19:34
PatJohnston6384
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04/09/2013 19:34
PatJohnston6384
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Re: Newly Diagnosed with Dupuytren's
Diane, I understand your fears. The continual aching pain factor for my hands since the nodules appeared continues to increase. Both the hand-specialist orthopedic surgeons I saw were only interested in advanced Dupuytren's, in which surgery was an option.
I am finding it hard to believe that, in 2013, there is a physical condition that needs to get worse, even if its advancement is obvious, before treatment is recommended. At least I now have an appointment with a hand-specialist who, according to his website, treats Dupuytren's at the beginning of its on-set. I'll keep this forum informed of what happens after my April 30 appointment.
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04/10/2013 01:13
hammer
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04/10/2013 01:13
hammer
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Re: Newly Diagnosed with Dupuytren's
Diane,
I had an injection in my pinky on tues 4/2 and manipulation on thurs 4/4 and broke the cord on my pinky and I was chippin golf balls on Friday.The next day.So I wanted you to know so you wont worry so much.xiaflex when put in the right spot just melts them cords.This was an old tough cord sticking up outa my hand,He injected it and it turned black and blue in no time.I expected this one to be the tough one but the drug is wicked on them.Im goin back in May.still 2 cords left and 2 injections to go for a total of 5 at this clinic.4 at the last clinic in Oklahoma,which my right hand is still cord free almost 2 years.Ill keep ya posted.Dave
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04/10/2013 09:50
zinkadoodle
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04/10/2013 09:50
zinkadoodle
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Re: Newly Diagnosed with Dupuytren's
Dave, interesting that you were chipping golf balls so soon after your injection. I'm a photographer, and my doc doesn't want me to be lifting my camera (big pro body and lenses) or other heavy objects, or serious gripping for at least a month. I don't know if it's because I'm in the multi cord clinical trial, or a fear that the enzyme would leak to other tissues, or both. Or whatever. I'm not sure how they'd feel about using a keyboard, given that I'm quite the computer junkie, but I imagine it would be good exercise. I'll find out on Monday.... ~Diane
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