I was diagnosed with DD in 1994 and have posted often on this site. My goal, after five major and four minor surgeries plus three rehabs, is to compare and contrast my initial surgeries and rehabs that were not successful with the last two that were successful. I hope you will then be able to learn from my mistakes and make better decisions on your treatment. Anyone who wishes may contact me for additional information.

In 1994 I experience hand discomfort while mowing the yard. Discovering lumps in my hand and fearing cancer I went to two GPs who were both unable to diagnose me. They referred me to a neurosurgeon who recognized DD immediately. Her best advice at that time was to avoid surgery as long as possible. The advice has proven to be incorrect but in 1994 it was the best recommendation available.
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In 2005 my left hand had significant contracture of the little and less in the ring finger and I went to what was the best orthopedic/hand surgeons in the Portland, OR/Vancouver, WA area, Rebound, who also treat professional athletes like the Portland Trailblazers. A surgeon performed a palmar fasciectomy (PF) and I had physical therapy (PT) at the same clinic.

By 2008 the little finger of the left hand was completely contracted again and a different surgeon at Rebound, who told me a second PF had only about a 15% chance of success, recommended an amputation of the little finger, part of the outer hand and a fusion of metacarpal to the ring finger. He performed this surgery which I now regret. Amputation should never be anything but a last resort.

In 2011 my right hand was fully involved with DD. The middle and ring finger were significantly contracted and I returned to the surgeon who performed the amputation of my left little finger and he recommended a PF. Please note prior to sitching surgeons I had talked to another DD sufferer and surgical nurses, who suggested I try this surgeon. The PF was completed and I again did rehab at Rebound. By 2012 the left middle and ring fingers were contracting and the right hand was also exhibiting symptoms again.

By this time I had lost my job, due to my DD disabilities, and my medical insurance. I applied for SS Disability and Medicaid as my state, WA, offers Medicaid under the ACA. Originally denied, I filed my own appeals and was, after nine months, successful. I sought Xiaflex treatment but Molina Insurance denied coverage calling it experimental. I filed an appeal with the help of the manufacturer, Auxilium, and was successful.

In the summer of 2013 I underwent two Xiaflex treatments and one NA in each hand. The pain was excruciating even with local anesthetic but I was denied a nerve block by the hospital. Some improvement occurred but due to the advanced nature of the disease Xiaflex was not successful. I recommend Xiaflex early in your treatment regimen and prior to surgery. The Musculoskeletal Specialist MD who did the Xiaflex and NA treatments recommended Dr. Richard K Green of Salmon Creek Plastic Surgery, Board Certified in both Hand and Plastic Surgery to do the upcoming PFs.

Dr. Green performed PF on my left hand in August and my right hand in October of 2013. I underwent PT at Urgent Care PT, also in Vancouver, WA. Both surgeries were successful and I know have full use of both hands for the first time in years.

Why were the second surgeries and rehabs successful? Dr. Green is too professional to say he is a better surgeon but that is my opinion. Also, the fact he is both a hand and a plastic surgeon could only have helped. Second, the PT at Urgent Care was very open to my trying other activities like playing cards and dribbling and shooting basketball as part of my therapy. Third, the Xiaflex might have contributed to the success of the subsequent surgeries. We simply don’t know for sure but that is my opinion.

I do have another cord forming at the base of the ring finger of my left hand. Dr. Green recommends another PF when the contraction reaches 30 degrees. After having four or five fingers either fully or partially contracted I am thrilled with this outcome.

Recommendations: 1) Research and interview all your MDs and PTs thoroughly. 2) Start with Xiaflex early in your diagnoses before you try surgery. 3) Resist amputation recommendations bitterly. 4) Be active and creative in your own PT. 5) Think about and research any healthcare provider recommendation and appeal any denial of said recommendation by insurance companies. Dupuytren’s is recognized as a disability only with great effort and most doctors do not have experience with it.

Also, if you suffer from this or any disabling disease, please support politicians who don’t want repeal of the ACA. Without it my quality of life would be zero and you may eventually need Medicaid or Medicare to fight this disease. Please contact me anytime with questions. I am not a lawyer or doctor but have extensive experience in both professions. Good luck!

econn:

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Thank you for sharing your battle with DC. I had my first treatment 5 days ago with Xiaflex and so far I am very pleased. Mine, too, was performed by a plastic surgeon in Salem, OR who is also skilled in NA and open fasciectomy. He felt the Xiaflex was the best course of action in my case. I am now able to use my left hand again, there is very slight pain and swelling at this time and I am doing my own rehab until I can get set up with PT and splinting. I had been considering surgery for several years now but didn't get really confident input from the surgeons I consulted with so I'm glad I waited for Xiaflex to be approved. I am getting nodules forming on my right hand with what appears to be a cord forming, so will have to wait until it gets bad enough to require treating. There is no guarantee the DC won't come back on my left hand but I would go through the injection again if it does.

I'm a big proponent of NA. Costs "only" about $1,000 or so all-up (mine was $700 in 2006), so even if you need to go out of network it may be something to consider. Xiaflex, albeit far more expensive, may be a good option as well. I'd suggest avoiding full-on "open-hand" surgery if at all possible. Unfortunately, many practitioners are still unaware of these newer procedures. It is well-advised to work with an experienced, skilled practitioner of NA and/or Xiaflex.

---My two cents---

mikes:

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I'm a big proponent of NA. Costs "only" about $1,000 or so all-up (mine was $700 in 2006).

Stefan K - Sacre bleu re the cost in Paris. My brother lives in France (and coincidentally also has DD, although he had surgery on his hand and the DD is returning.) Might be a nice way to pay him a visit. Can a foreigner really take advantage of the inexpensive cost? What doctor did you go to?

Brian - Thanks for the explanation. I think I was misleading in my original post. I do have contraction in my pinkie to about 45% as well as heavy nodules in the palm. I will visit the Xiaflex site and look up the trained doctors. Good idea.

And thank you both for the advice. Keep posting!

Mel