Note: The topic here is not germane to this website – Captive Thoughts. This is a private page accessible via link access meant to share my story with others suffering from Dupuytren Disease.
History
I am not a doctor. The information here is my personal experience, what I’ve learned and concluded after 50+ years dealing with this disease.
My battle with Dupuytren Disease has been a long journey. But before I begin, I need to make one point, one bottom line conclusion to the narrative. I have come to the conviction that surgery is not the answer to this disease. If I knew in 1968 what I know now, I would never have had that first surgery. There are other ways to deal with it. Whenever I encounter someone with the onset of the disease, I tell them to avoid surgery, it will only make things worse.
So, you can stop right here and read no further; unless you want to read the rest of the story – it is not short.
At this moment I am a 79-year-old male of an Italian father with a Scott/Irish Mother. If you know anything about the disease, you know those two facts are significant. It is often referred to as the Viking Disease, and sometimes the Pope’s disease. Research provides various reasons as to why that is, but I’ll leave you to study that for yourself.
Anyway, I believe my grandmother on my mother’s side had a mild Dupuytren Contracture (DC) condition. I live in Southern California in the Long Beach/Lakewood area. I have had and still have Dupuytren contractures in both hands and both feet (ledderhose), along with knuckle pad nodules on several fingers, and Peyronie’s disease. I was first diagnosed with DC in my early 20’s in my left hand, small finger.
My summary history is as follows:
’69 –Surgery #1 – Left little finger to correct contracture.
’70 – Surgery #2 – Left little finger removed at second knuckle due to atrophy.
’75 – Surgery #3 – Left hand knuckle pads removed, index and ring finger.
’79 – Surgery #4 – Left hand index finger and palm to correct severe contractures. – Skin graft taken from hip, required on palm.
’83 – Surgery #5 – Right hand ringer finger and palm to correct contractures.
’88 – Surgery #6 – Left hand palm and ring finger to correct contracture. – Skin graft taken from wrist, required on ring finger.
’95 – Surgery #7 – Left ring finger pinned and fused at second knuckle due to finger atrophy.
’98 – Surgery #8 – Right hand palm to correct contracture
Note: Started post-surgery regimen of daily hand stretching exercises.
2000 – Right hand contracture started – stabilized and remains at about a 60-degree bend.
2009 – Onset of Peyronie’s disease.
Note: Started alternative treatment with Enzyme Therapy protocol.
2011 – Right hand index finger contracture started – stabilized and remains at about a 45-degree bend.
2015 – Nodules developed at the base of both thumbs – cords developed up thumbs. Slow onset of contractures.
2023 – XIAFLEX injection on both hands to cords affecting thumb contractures.
I’ve had eight separate surgeries to both hands, and the problem continues to recur. My left small finger has been amputated since it atrophied after, and as a result of, the first surgery. My left ring finger required knuckle pin fusion due to the damage done over time. I’ve had a couple of skin grafts, one to my left palm taken from my hip following a surgery for a severe palm contracture. The other skin graft was from my wrist applied to the inside of my left ring finger following contracture release surgery.
At the time of my initial surgeries, I was employed by Southern California Edison Company. SCE Medical Department referred me to a hand specialist in Arcadia, CA. – a Dr. Robert Costerella. He eventually became a good friend. (He retired and we stayed in contact over the years; he eventually passed away.) Because my case was so aggressive, I was told by him that during my fourth surgery photographs were taken that would be used in a medical text book.
During the course of all my ins-and-outs with various physicians and surgeons I’ve tried acupuncture, Vit-B injections, vitamin therapy (mega-doses), etc., all to no avail.
After my most recent surgery in 1998, my therapist pointed to my feet and asked to take a look. Even though I had ledderhose on both feet, it really wasn’t that much of an issue. There was a point when it got uncomfortable, but my doctors at that time warned against surgery, so I just toughed it out. Eventually the nodules got smaller and less irritable. The therapist said the reason it hadn’t been an issue was because I walk on my feet and thus kept things stretched out, eventually dissipating to a minor discomfort. He said if I wanted to avoid future hand surgery, I needed to do the same with my hands. Not walk on them, but stretch them out daily. That therapist (also a DC victim) had the most gnarly and lumpy hands I had ever seen, yet they were fully functional. He convinced me never to go through surgery again. He showed me hand-stretching exercises that I’ve been doing ever since with a certain degree of success. My right little finger started to bend around 2000, but so far, I have avoided surgery. It is currently at about a 60-degree bend at the second knuckle and has advanced no further.
However, then came the Peyronie’s. Ugh!
From the very beginning, every doctor I’ve encountered regarding the Dupuytren’s asked me about “other parts” of my body. I never really knew why until 2009/10 when the Peyronie’s surfaced. I gradually noticed a nodule develop and then the classic symptoms. I didn’t know what it was at first; immediately went on-line and started research. I found many websites, Mayo Clinic and others. One in particular that offered an alternative treatment – as in alternative to surgery – called the Peyronie’s Disease Institute run by a Dr. Theodore Herazy. I purchased and downloaded their information. I had serious doubts about their recommendations. I did make some recommended diet changes, that’s all – but things just got worse, frighteningly worse.
I consulted my personal physician who sent me to a specialist. Not surprisingly he made the standard Vitamin C recommendation, and also prescribed pentoxifylline, which had no apparent effect. He also prescribed verapamil, but I already take verapamil daily to offset migraines. Beside surgery, I was offered no other alternatives. So I decided, what have I got to lose but a few dollars and started following the protocol from the Peyronie’s Disease Institute.
I started the enzyme therapy as advised. There are two brands of enzymes, and some on-line debate regarding the different brands. I started off using Serracor-NK, later switching to Neprinol. Right away I started noticing the benefits, and they seem to be the same with both products. I continued with the Vit-C 400, but added recommended doses the Fundamental Sulfur, Acetyl-L-caritine, PABA, as well as the Fibrozym and Nattokinase. I also started applying Vitamin E oil topical with DMSO. The results were more than satisfactory. The nodule reduced by at least 80 to 85% in size. Without going into all the details, the constrictions I experienced completely disappeared; and although I’m not completely back to normal, the pain, aching and discomfort is gone and my condition is acceptable as is.
However, the story is not over.
As things got better with the Peyronie’s, I found a side benefit to the enzyme therapy, I just felt better – my general health improved. I retired in 2010 from my 45 year career in operations/management and took on being a Principal of a small Christian school. I’ve placed myself on a reduced intake of enzymes, going into sort of a maintenance mode. I really believe they are beneficial to my general good health and improved energy level, aside from the DC treatment.
But in 2011, my right index finger began to develop the typical signs of DC. The Peyronie’s Disease Institute (PDI) had launched a new website called (surprise) the Dupuytren Contracture Institute (DCI). Following similar therapies and recommendations I’ve been getting satisfactory results. However, I’ve not been as aggressive as I should be – it is rather pricey and none of this is covered by insurance. In 2015, I started seeing nodules form at the base of both thumbs with cords forming as well. It is all becoming rather wearisome.
I should add that one thing I have added to my therapy is the use of an ultrasound devise (obtained from DCI) when applying the DMSO. My current enzyme and supplement regimen includes Neprinol, Bromalain 500, InflamaZyme, Fundamental Sulfur, Acetyl-L-caritine, PABA, Fibrozym, Nattokinase, Serretia, Vit-E, fish oil, and CoEnzyme Q10. I also take orally Scar-Free, and apply Super CP serum and Unique-E topically with the DSMO. All of this obtained from DCI (Dupuytren Contracture Institute). There is a considerable amount of information on the DCI website, interestingly the information regarding stretching exercises is very similar to the instructions I received from the therapist following my 1998 surgery.
Note: Dr. Herazy has retired and his websites are no longer active at this time. However, I included the above information to show that there are alternatives to surgery if one is willing to do the research.
In mid-2018 I added CBD to the plan, with twice daily application externally to my thumbs using DSMO. There was some relief of discomfort, but no observable improvement. I’ve also started a regimen of Melt Exercises. Again, some relief of discomfort and flexibility, but no observable improvement.
I’ve not tried radiation treatment. and have no opinion except to say that based on journal research and antidotal reports I’ve read, it seems to work for some but not others. Individual cases differ resulting in different outcomes.
I have read about the injection treatments, but from what I’ve read I’m not a good candidate with my advanced and aggressive disease. One thing I know for sure, every time I’ve had surgery the disease would surface in another spot. Again, what I have read in journal research and learned antidotally is that this is the case in almost all sufferers. Injection therapy and needle aponeurotomy (NA) are less invasive, but it appears that the results are the same; an invasive approach provides a short term fix, only to see it return or surface somewhere else. Again, you will find information at the DCI website regarding the various treatment approaches.
Xiaflex
However, in 2023 my thumb contractors got to the point I needed to do something. I thought it would be surgery, but my consultation visit to a plastic surgeon resulted in receiving Xiaflex injection, first to my left hand as “try and see” approach (I’m right handed), and subsequently to my right hand. It was relatively painless (except of the initial numbing injection) and resulted in an 85 to 90% improvement in contracture release and range of motion. There is one remaining cord at the base of my left thumb that was inaccessible in the first treatment which I may have treated later on.
At this point, I’m very satisfied Xiaflex injection outcome, but was in informed that there is a 50% chance that the contractures could recur in 5 years; in which case the procedure could be repeated. Given my case history, I can live with that.
As a side note:
I know a couple of younger men in my church who have milder cases of DC and I caution them against surgery and/or any invasive treatment. In a recent article by Dr. Theodore Herazy, he states a study of cyclical healing, that the condition improves in some degree for about 42% of patients without treatment. I believe he is right, and it is my opinion that people jump into surgery way too soon and ought to be cautious and patient to wait it out.
But to repeat, after all these years, if I knew 1968 what I know now, I would never have had that first operation. One doctor I consulted with agreed with my assessment saying that at best surgery provides a short-term gain, without long term benefits. It is my experience that surgery appears to aggravate the condition and starts a cycle of recurring out breaks and surgeries. It will be interesting to see if my recent injection therapy will net similar results.
Also, FYI: In mid-2018, I added CBD to the plan, with twice daily application externally to my thumbs using DSMO. There was some relief of discomfort, but no observable improvement. I’ve also started a regimen of Melt Exercises. Again, some relief of discomfort and flexibility, but no observable improvement.
So far none of my children have had an onset of the disease. Some research suggests the disease does skip a generation and resurface in descendants.
So, that’s my experience and what I’ve learned along the way.
First – There is a point where the symptoms stabilize, and the growth stops. At what point, why, and how is still a question mark, but it appears to be a fact. The question is “what are you willing to tolerate and live with?”
Second – Surgery is a short-term solution at best. It will either return, or stimulate the disease to surface on other hands, feet, and body parts.
Third – Enzyme Therapy does work. It can slow it down, reduce or reverse the symptoms. But it is not a simple route, and takes time and patience.
Forth – Stretching exercises can also slow it down or reduce the symptoms. It is important to consistently apply a stretching regimen; again time and patience in required.
Fifth – Melt Exercises can assist too, though the jury is still out on this technique.
Bottom line, there are alternative approaches and I would encourage one to do the research. But I do not recommend surgery or any other invasive approach as a viable solution. I was in a cycle of recurring surgeries every 3-4 years, expecting that to continue unabated. Subsequently however, from lessons learned in taking an alternative approach, my last surgery was in 1998, leading up to injection therapy in 2023.
