Thursday, October 27, 2016

I have Dupuytren’s Disease

Last November an odd, rather hard, bump suddenly appeared in the palm of my right hand. A few weeks later, in a routine physical exam, I asked my Dr. what the lump might be. She thought it was a harmless, ganglion cyst. In January, suddenly two more lumps appeared in the same area of my palm, about 1.5 inches below my little and ring fingers. Feeling some concern about this, I made an appointment with a hand specialist, a surgeon, who told me with absolute certainty that I had Dupuytren’s Disease.

Dupuytrens Disease, stage N, my right hand

In case you are wondering, Dupuytren (pronounced sort of like doo-pi-tron), is the name of a French surgeon who pioneered a surgical treatment for the disease in 1831. With thanks to the internet, especially The International Dupuytren Society website and forum, I have learned a lot about this disease and have since taken steps to prevent or at least slow its further development.

Dupuytren’s Disease (also called Dupuytren's contracture) is basically a non-malignant, tumor-building, auto-immune disease that affects the hands, with about a 40% chance of eventually turning a functioning hand into a claw which cannot be opened. The disease targets the tiny fibers which join the skin on the palm and fingers to the structure of the hand (bone, muscles, tendons, nerves). The fibers become enlarged, hardened, and inflexible. In roughly 60% of the people who have it, the disease at some point goes dormant, leaving the person with partial to full use of their hand(s). For the unlucky 40% who lose the use of their hand(s), the options are grim. Surgery to remove the fibrous tumors, along with 6 months of physical therapy following surgery, is a horrendous ordeal. And often the small bits of remaining tumor grow and spread, resulting in a closed, useless hand again some months or years later. There is no known cure.
You can skip this paragraph if you are not so interested in the disease in general. In the following paragraphs, I’ll tell you about my personal experience with it so far... Some other names for Dupuytren’s Disease are: claw hand, Viking disease, palmar fascia contracture, and flexion contracture. Because it often causes one or more fingers to curl inward toward the palm, it is sometimes confused with trigger finger, an entirely different affliction. It is linked to heredity, Northern European descent, diabetes and other auto-immune diseases. Men are more likely to have it than women, and its incidence increases in older (over 50) folks for both men and women. Often it is dormant until there is injury or trauma to the hand(s). There are currently four categories of treatment: radiation therapy (successful only in the very early developmental stage of the disease), needle aponeurotomy (generally considered for stage 1 or 2 of the disease with 6 to 90 degrees of deformation), collagenase injection (also stage 1 or 2), and surgery (advanced stages).
Dupuytrens Disease, my right hand prior to symptoms showing
This is a copy-machine scan of my right hand in August, 2012. At that time, I probably had the disease, but there were no obvious signs of it.

my hand (beaded), before onset of Dupuytren's Disease
This is a piece I created using the above scan. It celebrates the many blessings of my hand. Who knew that 4 years later it would be in jeopardy.
If you know me at all, you know that I love to stitch! Give me a needle and thread, a few beads or layered fabric that needs hand-quilting, and I am in heaven. If I couldn’t stitch, I’d be miserable. Already, I noticed (in January) that my right (dominant) hand was losing flexibility and strength. I dropped things all of the time because my grip was not as strong. And I could not spread my fingers or flex them backwards. The progression was alarmingly fast at that time, and affected my ability to hold and control a needle, scissors, etc.

So, as I learned more and more about the possible development of my disease, I decided to take an immediate step to get radiation therapy, which reportedly has an 85 to 93% chance of halting further development of the disease, if taken when the disease is in its initial, active, developmental phase. The treatment consists of 5 + 5, daily, low-dose, radiation sessions (with a 3 month or more interval between the first and second five sessions).

In the USA, the medical profession has mostly chosen to ignore the early stages of the disease, because (I guess) it only becomes a serious issue for about 40% of those who have it, and they (like me) are mostly older folks with a good chance of dying before the disease becomes seriously debilitating. Until quite recently, treatment has been in the realm of the surgeons. The one who diagnosed me, for example, did not even mention radiation therapy. He simply said that if it got worse, much worse, we could consider surgery.

For this reason, not many hospitals or insurance plans offer or cover radiation therapy. I discovered that it is offered by Overlake Hospital in Bellevue, WA, but not covered by my Medicare Insurance Plan. The out-of-pocket expense for the treatments for one hand would be a whopping $25,000 if I chose to pay for it myself. Even if my insurance had covered it, my cost would still have been 20% or $5,000. So I began to look into other options.

Dupuytren's disease, markup of nodules and cords on both hands

I learned that one of the Radiation Treatment Centers in Germany had been treating about 300 Dupuytren patients per year since the mid-1980s, and keeping extensive follow-up records on their patients. The total cost of treatments for one hand is $1,800. I figured if I bought airline tickets enough in advance and stayed in low-cost lodging, I could make two trips to Germany and get the treatments for a lot less than I would pay in the USA.  A few emails later, I had an appointment for my first clinic visit and treatment in Hamburg, Germany, April 23, 2016. My cost for lodging and travel expenses and the first round of treatments was just under $3,000.

Dupuytren's disease, radiation therapy in Hamburg, Germany
The RT machine just before my last treatment. It will be lowered to just above my hand for the 30 +/- seconds of the radiation.
Good news! I just returned from the second (last) round of treatments, with the cost being less because of cheaper airfare and no initial exam/treatment plan. The total cost for both trips to Germany and the treatments was about 1/5 of what it would have been close to home in Bellevue, WA!

Although I also have the disease in my left hand, it has not developed enough yet to warrant radiation treatment, and (with luck) may never do so. On this second visit, the Dr. was pleased to tell me that he could detect no further progression of the disease in my right hand since the first series of treatments. I’m hoping to be among the lucky 90 or so percent who never see further development of the disease. Although I’m slower and clumsier than I was 10 months ago, I can still sew, bead, crochet, and knit! Let’s hear it for taking quick, affirmative action!

If you have this disease or know anyone who does, you/they can find specific information and links here, including the details of when, where, how much, and by whom I had the treatments.

And last of all, here is a link to an interesting article, featuring 7 famous people who have Dupuytren's Disease.

Dupuytren Report 1 yr. After Radiation Therapy

Good news! It's almost 1 year since I completed the second round of radiation therapy on my right hand in Germany. In this year, there has been no further progression of the disease. I believe there has even been a slight softening of both the nodules and cords. My lack flexibility (only slight ability to bend my fingers backwards, and reduced spread of my fingers to thumb) is the same as before the treatment. Although some sources recommend it, I don't wear a brace at night (but do try to fall asleep with both hands flat on my tummy), do exercises, or get any type of massage therapy.