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02/02/2011 15:48
jlm33990 
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02/02/2011 15:48
jlm33990
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Just joined...first post...need advice.
Hi-
My name is Jim. I have dupuytren, right palm and little finger. I've had this condition for about 5 years. Over the last 6 months it has worsened dramatically, going from a minor nuisance on the palm (small lump with cord) near where the little finger joins the palm, to a rapid spreading down the little finger. There is now a noticeable growth in the inside of the first segment of the little finger bending it inward. The middle segment of the little finger is now starting to harden on the outside edge. It's debilitating, ugly, uncomfortable and I want it fixed.
I hope I have not waited too long. When I first saw a doctor about this, 5 years ago in boston, I was told to do nothing until it became necessary and then have surgery which may or may not fix the problem, i.e., it may grow back.
A recent job change has sent me to Oahu Hawaii for at least the next couple of years.
Now I'm wondering what to do. What is the best course of action? I've read about needle therapy where the cord is broken with many needle punctures as an alternative to surgery.
I'm 56 years old, irish descent. I'm active and in overall good health.
Should I have surgery asap?
Or test the needle therapy?
On the islands or travel to the mainland for md expertise?
Or wait until the little finger is totally compromised and then act?
Is there a specialist with experience anywhere in hawaii?
I appreciate any help offered.
Well wishes to everyone.
-Jim
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02/02/2011 16:00
callie 
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02/02/2011 16:00
callie
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Re: Just joined...first post...need advice.
What degree of contraction do you have? Remember that often people will have the initial Dupuytren's and then it might not get worse for the rest of your life. You have choices for treatment depending on your preference and lifestyle. Surgery has a better record than other procedures for recurrence of Dupuytren's, but surgery is more intense than other procedures.
I chose surgery nine years ago and my little finger (was 90 degrees contracted) is as good now as it was prior to Dupuytren's. Everyone is different no matter what type of procedure a person chooses.
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02/02/2011 16:28
jlm33990
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02/02/2011 16:28
jlm33990
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Re: Just joined...first post...need advice.
callie:
What degree of contraction do you have? Remember that often people will have the initial Dupuytren's and then it might not get worse for the rest of your life. You have choices for treatment depending on your preference and lifestyle. Surgery has a better record than other procedures for recurrence of Dupuytren's, but surgery is more intense than other procedures.
I chose surgery nine years ago and my little finger (was 90 degrees contracted) is as good now as it was prior to Dupuytren's. Everyone is different no matter what type of procedure a person chooses.
Callie-
Thanks. I have about a 45 degree contraction on the little finger. (And I feel it's getting worse)
My lifestyle is very athletic and active and I use my hands at work. I'm an IT engineer often in front of a computer.
My preference is biting the bullet and get it fixed.
What other procedures are available other than the two I mentioned?
What ramifications can I expect from surgery other than the obvious? It sounds like you are 100%. Do you have any loss of sensitivity or evidence of long term nerve damage?
How long can I expect the recovery from surgery to last?
One more thing, when I originally was seen five years ago, I was told my prognosis was not good because I also had nodules on the top of the PIP joint.
-Jim
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02/02/2011 17:51
callie
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02/02/2011 17:51
callie
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Re: Just joined...first post...need advice.
With a 45 degree contraction your choices are basically surgery (a limited fasciectomy), or NA (with the needle). I was 54 when I had my surgery. At the time I had the same choice as you are facing. I went with the surgery and am very satisfied. If I had to do it again on the other hand, I would do the fasciectomy again because of the success I had. I have no nerve or muscle loss at all. Your situation is much better than my situation was. If you do go with surgery, make sure you choose a HAND surgeon who has had considerable experience with Dupuytren's. I was driving the next day after surgery but I was one handed (slow) on the computer keyboard for about three weeks. I was golfing and putting pressure on the hand/finger in about three months. The hand was 100 percent in a year and almost totally functional in four months.
If you choose NA you will be back in action sooner, but the recurrence will most likely be sooner than with a fasciectomy. My surgeon said that he very seldom saw a patient again after doing a Dupuytren's surgery once. It is a personal choice. I am continually surprised that out of the tens of thousands of surgeries done each year for Dupuytren's that there are very, very few who find this site to complain about their outcome.
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02/02/2011 18:24
jlm33990
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02/02/2011 18:24
jlm33990
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Re: Just joined...first post...need advice.
callie:
With a 45 degree contraction your choices are basically surgery (a limited fasciectomy), or NA (with the needle). I was 54 when I had my surgery. At the time I had the same choice as you are facing. I went with the surgery and am very satisfied. If I had to do it again on the other hand, I would do the fasciectomy again because of the success I had. I have no nerve or muscle loss at all. Your situation is much better than my situation was. If you do go with surgery, make sure you choose a HAND surgeon who has had considerable experience with Dupuytren's. I was driving the next day after surgery but I was one handed (slow) on the computer keyboard for about three weeks. I was golfing and putting pressure on the hand/finger in about three months. The hand was 100 percent in a year and almost totally functional in four months.
If you choose NA you will be back in action sooner, but the recurrence will most likely be sooner than with a fasciectomy. My surgeon said that he very seldom saw a patient again after doing a Dupuytren's surgery once. It is a personal choice. I am continually surprised that out of the tens of thousands of surgeries done each year for Dupuytren's that there are very, very few who find this site to complain about their outcome.
Callie-
Thanks again.
Who are the best hand surgeons in the USA for this procedure?
If possible please list or refer me to the top 10.
-Jim
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02/02/2011 18:48
callie
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02/02/2011 18:48
callie
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Re: Just joined...first post...need advice.
I don't think there is that kind of a list available. There should be a very good hand surgeon on the islands. This isn't a difficult (uncommon) surgery for a hand surgeon. My surgeon made the remark that it (Dupuytren's surgery) was nothing comparable to the reconstruction of injured hands that he saw on a daily/weekly basis from accidents.
Edited 02/02/11 20:50
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02/02/2011 19:05
ellenpao 
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02/02/2011 19:05
ellenpao
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Re: Just joined...first post...need advice.
Try the NA first - you can always have the surgery later.
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02/02/2011 23:07
LubaM.
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02/02/2011 23:07
LubaM.
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Re: Just joined...first post...need advice.
If you choose NA you will be back in action sooner, but the recurrence will most likely be sooner than with a fasciectomy. My surgeon said that he very seldom saw a patient again after doing a Dupuytren's surgery once. It is a personal choice. I am continually surprised that out of the tens of thousands of surgeries done each year for Dupuytren's that there are very, very few who find this site to complain about their outcome.
To Jlm33990...
With regard to Callie's comment above.....
Choosing between a surgery and NA is totally your personal choice. I would suggest you do a "search" on this forum on both subjects and make your own decision. Its wonderful that Callie had good results with her surgery, and might be right that NA does recur sooner in some cases.
The truth is that this is a "weird" disease, so different from one person to the other. I have been following this forum for over six years and am an active member (regularly read what's posted, and often offer advice) ... and if you read alot on this forum you will find people who have had great results with surgery and others that have had lots of complications.
On a personal note... I would opt for NA first... recovery is quick and results are usually immediate.... and maybe you'll be one of the lucky ones and it will not recur.... There's always time to do surgery. If you opt for NA, click under "treatment" at the top of the page to find names of doctors...then come back and post your questions. Many people on this forum will answer.
Good luck with your decision.
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02/03/2011 02:45
David26not registered
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02/03/2011 02:45
David26not registered
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Re: my best advice is.....
minimal invasive treatments are always the way to go IF it will work in your situation. Radiation therapy, NA and Xiaflex are the common options. There are instances where NA just won't work and you might be left with no choice but traditional surgery.
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02/03/2011 14:38
marjorieb
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02/03/2011 14:38
marjorieb
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Re: Just joined...first post...need advice.
callie:
I don't think there is that kind of a list available. There should be a very good hand surgeon on the islands. This isn't a difficult (uncommon) surgery for a hand surgeon. My surgeon made the remark that it (Dupuytren's surgery) was nothing comparable to the reconstruction of injured hands that he saw on a daily/weekly basis from accidents.
Jim,
Callie/her MD are so right, here. Speaking as a therapist, who has treated the mutilated hands, replants, tendon repairs, and all other things including Dupuytrens. Dupuytren's patients generally have less complications, better outcomes, and are very happy with the results.
Your hand therapist will be very important. Be sure to see a Certified Hand Therapist. Don't settle for just PT or OT. The length of treatment really depends on the degree of joint contracture you have. Joint contractures are more complex to treat. Managing the scar is not difficult. Healing rates are generally pretty quick, unless complicated by coexisting conditions, such as arthritis or anything that slows circulation.
I can't speak to any of the other treatments. I'm new to this as a patient, rather than therapist. So, I'm reading all the opinions as well.
Good luck with your decision,
Beth
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