Trigger8,

I am so sorry to have upset you. It is not my goal at all to frighten anyone but if people are to learn about this disease and how to combat it we must be open. To your questions:

DD primarily effects the little and ring finger. This, of course, is not universal and other parts of your body can be effected as well. I have lost the little finger of my left hand and will probably lose the little and ring finger of my right hand. The ring finger of my left hand is partially contracted but at the knuckle instead of the PIP joint which is easier to deal with. The little and ring finger of my right hands are 100% contracted at the PP joint. The fingernails dig into my palm and I have to jam a pair of pliers under the fingers and twist it so I can cut my fingernails. The nails have drawn blood from the palms at times. Xiaflex helped reduce the contraction at the knuckle meaning if they are amputated it will be at the PP joint, leaving stubs which will be handy, I hope, for gripping and typing.

The little finger of my left hand was amputated in a unique way. There is no "stub" as the entire finger was removed below the knuckle and the metacarpal was bent inward and fused to the metacarpal of the ring finger. The nerve to my little finger was retained and also "fused" inward. I still think sometimes I have a little finger but most people don't even notice I don't have a left little finger given the skill of the surgeon and lack of a "stub". I wish he has as successful at my palmar fasciectomy.

Interestingly, my career, like yours may be, has been impacted by DD. I cannot shake hands and typing is a challenge with just four fingers on my left hand and three usable fingers on my right. This has cost me work and job opportunities. For example, I do great at phone interviews, but when the process moves to an in-person interview I can't shake hands. Initially, I told the truth about having DD but lately, after not getting jobs, I have shifted to saying I have a sprained wrist due to cycling accident. Co-workers, ignorant ones anyway, used to make fun of my "hunt and peck" typing and I stopped trying to explain the disease.

I have been the first DD patient of more doctors than I want to count. For example the doctor appointed to review my appeal for Medicaid coverage by both a state Department of Social and Health Services and the Social Security Administration had never seen a case in over 20 years of practice. I was successful in getting Medicaid but this will shift to Medicare on September 1st so I am trying to get surgeries and treatment done by then much as TetonRose is trying to do. It took me a year and a half to conduct all of the government and insurance company (the government contracts Medicaid to private companies requiring another level of appeal) appeals to get treatment. All the while the disease progresses unpredictably.

Yardwork: I miss being able to do it well. For example, I have to pull start the lawnmower with my left hand while holding the lever down with my right (I am right handed). Not easy to do but I can mow the yard. I used to put the pull starter under my two right hand contracted fingers but it compression locked once and damn near broke them. If I had broken the fingers I would have had them amputated and moved on. I have several times thought about accidents that would cleanly remove the fingers but don't have that kind of courage.

Using a shovel and hoe is very difficult but all of this, as well as cycling, skiing, shaking hands, etc., will improve even if my two right hand fingers are amputated at the PP joint. 100% finger contracture is a problem.

I hope this doesn't upset you but it is the reality me and many people have to deal with as positively as possible. Given all the problems people have with uninformed government agencies, health care providers and insurance companies I am thinking of starting another thread on this site just dealing with appeals. I was a hearing officer for a state agency for many years, have managed many attorneys (and prevailed over many more) and have time on my hands. Maybe helping people get treatment for DD would be rewarding! Good luck to all.

I suppose upset is the wrong word maybe frustrated. You talk of combatting the disease and I suppose some people do. With you it seems Dupuytren has the upper hand pardon the pun! I look forward to hearing how you get on. I know you said the little finger and ring finger were most affected but it is not necessarily so and not too good knowing one could lose most of their fingers. I broke both wrists so I suppose that could also be a reason but I have never heard of any Relative with it. I have been unable to find any Drs. in my area so may have to travel to Sydney.
I was going to buy a mower that has a key you switch on but my back is too crook. As for typing you can now get a program that works with voice recognition and you speak and it types. I can get the details if you are interested.
Money is not a problem for me as I am a war widow and the Govt pays all my medical expenses. Anyway Australia has free Hospitals and our Medicare pays for most of the expenses.

Brian,

What did you do about Dupuytren's at the early stages? Looking back, did you wait too long to have any procedures? What degree of contracture did you have when you had your first procedure? I have met many doctors who have been dealing with Dupuytren's for 20 years.

Hi Callie,

I was diagnosed in 1994 but the first two doctors had no idea what it was. I just had lumps in my left hand that I noticed when mowing the yard and thought it might be cancer. The third doctor I saw was a neurosurgeon who recognized it was DD right away. I did not have fingers contracted at that time. The neuorsurgeon advised doing nothing until contractures occurred as surgery was very invasive and not always successful. At that time of course Xiaflex was not an option and the other options were not widely known, DMSO, NA, etc.

In 2005 the little finger of my left hand rapidly contracted to 90 degrees at the PIP joint with lesser but some involvement of the middle and ring finger. It was literally a matter of a few months for the little finger to contract. I went to a hand surgeon in the most respected orthopedic surgical and rehab clinic in the Portland area. They operate on many people with athletic injuries at all levels through professional sports. Again the options were limited and the surgeon recommended a:

1) Left small finger subtotal palmar fasciectomy from the palm to the digit.
2) " " " PIP joint volar capsulectomy.
3) " ring finger subtotal palmar fasciectomy, palm only.
4) " middle finger " " " " " .

He did tell me that surgery, while the best option in his opinion, would not fully restore the hand to normal.

The result was the middle finger responded fully, the ring finger partially and the little finger returned to 90 degree contracture by 2008 whereupon I had the middle finger amputated by another surgeon at the same clinic who was recommended by a fellow PP sufferer who had successful surgery with him. The ring finger is not contracted at the PIP joint but has a slight contracture at the knuckle and a large "pad" between the knuckle and the PIP joint.

In 2011 I went back to the surgeon who performed the amputation when I had a 10 degree MP contracture and a PIP contracture of the ring finger and a small finger PIP contracture of 50 degrees in the right hand. Since Xiaflex was FDA approved in 2010 I talked with him long and hard about this option over surgery. "I do not think Xiaflex would be effective due to the proximity of the neuorvascular bundle of the flexor tendon over the PIP joint." I am quoting this from my medical records which I suggest every patient request and retain. He also told me he had never used Xiaflex and had attended a short presentation by the manufacturer of Xiaflex at a conference and was skeptical. I agreed to surgery.

He performed a right ring finger, small finger subtotal palmar fasciectomy (PF) on Sept 13, 2011. The incision was a long loop extending from the ring finger, down the palm and looping back up to the small finger. I think it was about 50-60 stitches. I went through rehab for several months and could not work for this period due to the chance of infection. Coincidentally my job ended at this time. I was calling on clinics in a sales capacity for a variety of medical/pharmaceutical manufacturers and county health clinics were part of my routine. My surgeon, correctly, didn't want me anywhere near the diseases frequently found in these clinics.

Fast forward to today, the ring and little finger of my left hand are completely contracted. I would have gone back for treatment sooner, but it took about a year and a half to get through insurance appeals, first to get insurance (Medicaid) and second to convince the provider to approve Xiaflex. Xiaflex helped the knuckle joints a little but had no effect on the PIP joints. NA was not effective at all.

On Tuesday of this week I saw a person who is both a hand and a plastic surgeon to discuss a procedure advocated by Dr. Lynn Ketchum that involves both PF and skin grafts over the incision sites. The doctor I talked with has done both but only does the skin grafts if it is absolutely necessary as determined during surgery. He believes removing the cord or cords are the answer and it sometimes has to be done every couple of years. (Ouch!) He also believes Xiaflex could be effective in the early stages of the disease but not at my current level of contracture, you have to remove the cords, not just break them. So to answer your question, I wish I had done Xiaflex in 2011 prior to surgery but there is no guarantee of success with any treatment.

All four of the surgeons I have seen from the diagnosis in 1994 to today (20 years!) are excellent at their professions. They are just using the best information available at the various times and through their own experience. Again, I would use Xiaflex as soon as a cord can be palpated first then move on to surgery. I am not a fan of NA but should someone prefer that method do it before surgery and as soon as a cord can be palpated.

The PF will be done this month then later on the left hand. Insurance company allowing. Hope this helps.

Hey Brian - thanks for the response. I have decided to keep playing some - even with diminished capacity - and as much as I can before it goes away entirely. The doc did use the spray to numb the injection areas - however - it still was extremely painful and took about 20 minutes. And he did use the local for the manipulation - thank god. My hand was so sore the day after the injections and the day of the manipulation that I couldn't even touch parts of it gently without extreme pain. I freaked out knowing that the guy was going to be breaking open the cord with a very strong manipulation of the hand - but the local did eliminate most of the pain. The local injections were pretty painful as well....so I'm not sure I want to subject myself to anything more. The doc I used is in Bend is very experienced and well known for this procedure. Now my surgeon here in Eugene is doing both Xiaflex and NA. I guess they do not want to use a local because they want to know if they are impinging on a nerve as they inject or needle the area.

As I'm writing this I'm thinking that if they are injecting into the middle of a palm nodule - the odds of hitting a nerve is pretty low. Injecting into a cord or something in the finger itself is another matter entirely and probably much more risky - nerve wise. Maybe I can get him to give me a local for the palm nodules.

For pain management for all this stuff really a regional (Bier) block is what would work best. The insurance companies won't pay for it because it requires an anesthesiologist - and the docs probably don't want it for the reason mentioned above. Oh well....it seems so weird that in these days of extremely sophisticated medical procedures and pain mgmt techniques - something like this has to be that painful.