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 a half inch 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.

40 comments:

  1. So pleased you listen to your body and took the steps necessary for treatment. Amazing how medicine works well in some countries and not well in others. My hands and my eyes - I would be a soul without a tether if I could not see and create.

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    1. Thanks, Yarngoddess! Yep, vision and hands... my sentiments, exactly!

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  2. I'm so sorry you have to go through this. Sending you healing thoughts and hugs.

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    1. Thanks, Genevieve! You of all people would understand about the misery a non-functioning dominant hand would cause me. I am very optimistic about the treatment I received, and thankfully I was able to get it before my hand function deteriorated to the point where I couldn't sew or knit.

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  3. As a Canadian lucky enough tobe covered for this sort of thing, i empathize..I am going to , with your permission, put this article on my Facebook page for all those who complain about 'Obamacare' or the waiting lists here to read and ponder..it is so terrible that you had to go to Europe to get decent, affordable medical care...makes me wonder how many others from N. America are doing the same thing..there is no reason for this... good luck in continuing with your beautiful work...

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    1. Thanks so much, Mizdarlin! Of course you have permission to link this post on your FB page. When I first went to the hand surgeon to see what was wrong with my hand, I had never heard of Dupuytren's Disease (by any of its names). Since then, I've found 6 people in my small community who have it, one of whom was able to get radiation therapy at the hospital I mentioned in the post (Overlake, in Bellevue, WA), and it was covered by her insurance. She had very comprehensive insurance through her work place, not merely Medicare, as in my case.

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  4. I am happy to hear of your good results with radiation. I wish you years and years of happy creative days and finished projects.

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    1. Thanks for your good wishes, Sylvia! Happy, creative days is my wish for all of us, you too :)

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  5. I am so glad that you found a successful and affordable treatment - even if you had to go to my Fatherland to find it. Brava! I had some trigger finger problems a year ago that scared the beejeezus out of me, so I can understand some of the concerns you've been facing. *hugs*

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    1. Thanks so much Carol! I've enjoyed our FB connection, and it's always nice to know somebody who understands about hand issues!

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  6. I commend you for your pro-active handling of your medical issue. Isn't it a shame that Americans get better medical care by going overseas? You are the second person I have heard that received excellent and affordable medical care in Germany this year. Best wishes for continued success in combating the disease! Jeanne Evans

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    1. Thanks, Jeanne. There are always pros and cons about every treatment plan, mine included. But, so far, it seems to have been a good decision to give up on badgering my insurance provider, in order to get treatment in a timely fashion.

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  7. So very well done to find out about and undertake the treatment in Germany. We all know life isn't fair, but what a bummer! The best news is that the radiation appears to have been successful and you can continue to create beautiful pieces of work. With love and admiration from us both. April & Frank XX

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    1. Good to hear from you, April! Actually, there were side benefits to both trips because I was able to fit visits with good friends in Europe, making them pleasurable trips as well as a medical trips. There are several good clinics for this treatment in England according to reports on the Dupuytren Society forum. However, on my final visit, I met a man from England, who had no insurance, and thus elected (as I did) to come to Germany for a total cost of quite a bit less that he would have had to pay in England. I'm so grateful for having options!

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    2. I saw the photo of you with Anna, but of course didn't at that time know the underlying reason for your visit to Europe. (I missed meeting Anna at my friend Steph's house earlier this year by about 15 mins, which was very disappointing. I understood she would be staying for tea!) Germany has a very good reputation for medical treatment. I'm so relieved you were able to benefit from it. Take care of yourself x

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    3. Sorry you missed meeting Anna, as she's a way-fun person and so knowledgeable about beads. Hope there will be another opportunity for you. Best to you, and hugs :) R

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  8. Hooray for the good news! Welcome home too!

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    1. Thanks, Marie! It's good to be back to my own bed, soft toilet tissue, and free public bathrooms, not to mention all the good things about our island :)

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  9. Thank you for sharing your journey with us! I'm sitting here listening to the news....politics...ugh! and then I read your post. Your story really puts the important things in perspective! Our health; our creativity and the ability to use that gift; friends, family....I could go on but you get my drift! So happy to hear that the treatment is working for you...Positive thoughts rushing your way.

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    1. Thanks, Jay. Yep, I get your drift, and agree 100%. I feel so supported by all who have commented here. It's great!

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  10. I'm so so happy you found a way to get needed treatment for your hands. I can really relate to your concerns. Mine fingers are curling in now, starting with the pinky being the worst. But mine is a form of limited scleroderma; no known treatment. I am delighted you were able to be treated, and join you in believing for you to be amongst the 90% who are blessed to not see further progression!

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    1. Wow, Retta, I've never heard of that one, and so had to look it up and read about it. Quite a few things in common with Dupuytren's Disease... especially that they are both auto-immune diseases. Did you have blood tests to confirm that's what you have? I'm sorry there's no treatment for it and hope it doesn't get in the way of you doing your art too much. Nice to hear from you! Hugs, R

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    2. Yes, I was actually diagnosed years ago. Back then, all the symptoms hadn't presented in an obvious way yet (it's also called CREST syndrome). But now... it's all there, and no question. One good thing is that it seems to move slowly. My hands didn't really start changing til about4 years ago, and slowly. So... we learn to take life on life's terms. :-)

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    3. Yes, we do, Retta. Case in point, I greatly admired a bead artist 20 years ago, who lost the precision use of her hands due to a stroke. With no self-pity at all, she moved to a state where gardening is easy, and turned a whole back yard into a flower garden full of color and joy. Amazing woman!

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  11. So glad you have been able to get the treatment and can keep 'creating'.

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    1. Thanks, Jayne... I'm glad too!

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  12. I'm so happy things have turned out well for you. I don't have any public/social presence, but I enjoy lots of needle and bead related hobbies, and over the years your beautiful work has brought me many hours of pleasure and often inspired me to try something new. Best wishes for continued good health and happiness.

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    1. Thanks, Libby... very sweet of you to comment here, saying my work has influenced you over the years. I am blessed to be so supported by readers!

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  13. Robin, I could have written your post, except I haven't gone to Germany or had radiation treatments anywhere. To be honest, I haven't done anything about the painless bumps because of more concern to me is painful arthritis in my hands. I go every three months for injections into my thumb joints to keep that under control. Like you, everything I do with my hands is important to me, so I do the best I can to keep going forward. The Duputryns nodules have not changed in a years, so I'm lucky, so far. Good for you for bring pro-active! Best wishes...Barbara

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    1. Yes, Barbara, if your nodules haven't changed in a year, then you are smart to let it go. But if you notice they are getting flatter and you can feel cords forming between the nodules and your fingers, then it may mean the disease is in an active phase, and you could consider radiation treatment at that time. Meanwhile, yes, I have some arthritis issues too. But, the good news is, we aren't suffering from anything terminal. Best wishes to you too.

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  14. I have it in both my hands in association with arthritis and have been treating it for some time now with physio and massage ,mine luckily seems to be stable.I do so much art and craft and would be lost if I lost the use of my hands.
    My younger brother also has it ,probably due to using a wheelchair to get around.
    As a former OR nurse I have seem the surgery,hear the Drs stories about this disease.I was unaware of the radium treatment but to me that would be a much better way to treat the disease ,I will be checking out about it and telling my brother about that treatment option ,his is progressing.So thank you for your post and I so hope your fingers/hands remain nibble.
    Cheers Faye

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    1. Hi Faye (coincidentally, Faye is my middle name)! Stable is good; that's what I'm hoping for too. Good luck to both you and your brother.

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  15. Robin, I think I read your post about this on FB. I am so glad you were able to find treatment--isn't the cost difference amazing? When I get medical bills for what they are charging for a 10 minute visit and a steroid shot, I am horrified. Our medical system still needs a lot of work. Anyway, isn't the internet wonderful, and I am so glad you were your own best advocate and found treatment so you can continue your wonderful stitching!

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    1. Hi Debby, Thanks for writing. Yes, our medical system has to support so much advertising and so many layers of administration that it's no wonder the costs are so high. Everything was soooooo much more simple in Germany, which must be at least part of the reason why the cost was less than a fifth of what it is here. Cheers, Robin

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  16. Anonymous11:35 AM

    I'm so glad to hear you are still stitching, beading and chrocheting ! Love, Helene H

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    1. Dear Helene... so nice to hear from you. It's been a long time, but I'll never forget you or your beading. Hugs, R

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  17. I spotted your blog along the side of one of my usual stops -- opened it and read your story. Robin -- you were the person who got me started on beading. You will always be dear to my heart because that got me back into stitching. I am so thankful that you went ahead with the treatments and that they seem to be working. You have always been an inspiration to we 'beaders/stitchers but now you are a wonderful inspiration to those who might contract this disease and those of us who don't have it but have gone through this journey with you. Thank you so much for being there and for you positive attitude and actions.

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    1. Oh Penny, what a heart-warming comment! Thanks so much for taking the time to write. It's great that you got back into stitching, and I hope both of us will be stitching and beading for the rest of our lives. I'll be posting my latest work soon. Hope to see you back again then. Cheers, R

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  18. Thank you Robin for blogging about the details of your treatment. I have just been diagnosed, and it's active and rapidly progressing. The specialist I was referred to doesn't believe radiation is helpful. The nearest clinic that does it is about 1 hr away. I am looking into whether to try to do it here or in Germany. Your cost estimates are very helpful! Looks like it's almost a wash on costs IF my insurance will cover it.

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    1. You are welcome! I wish you the best with getting radiation treatment as soon as possible. Thanks to your comment, I was reminded to add an update at the end of the post. It's good news... no further progression of the disease 1 year after the last RT! I hope the same will be true for you.

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Thanks you for joining the discussion on this post today!