Dupuytren's Disease

in #hive2 months ago

Life is never certain. No matter how farsighted or detailed the plan is, life can throw us a curveball we didn't expect. What we do with this realization defines us and our future. As of today, I find another obstacle presented before me.

Being challenged in life is inevitable, being defeated is optional.
–Roger Crawford

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Image by Daniel Reche from Pixabay

Part of my job involves office work. I analyze data, write reports, and help management decide on various activities. Whether refueling a nuclear reactor or performing industrial radiography, desk work is as essential as fieldwork.

One day I'm typing a set of equations that helps me determine the projected radiation exposure of multiple jobs. At some point, I started feeling a stinging sensation in my right hand during this activity. "Well, that's crappy," I thought to myself. I reported the issue to my supervisor, who sent me straight to the medical facility. After speaking with a doctor there, she told me that the symptoms I was experiencing were classic Carpal Tunnel Syndrome. Yet, there was more to this story I didn't expect.

Let's take a dive into my situation!

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The Event

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Life happens. When an event disrupts your bubble, you have a couple of options. First, you can ignore the problem. If it isn't significant enough, you might be able to ignore it. Your will to endure could be of sufficient strength to help you forget your problem.

Second, you could despair. Let the weight of your problem overcome you. Allow yourself the luxury to wallow in self-pity. Perhaps my thoughts are too strong on this matter. Sometimes, people get sad about their predicament before they take action. Maybe I have too many mouths to feed. I don't have the time to worry. I have to act to achieve new stability.

While I was at the medical facility, I noticed that I had lumps in my right hand. The doctor there stated it was a benign cyst. I thought it odd that she called it benign, as it bothered me since I started feeling a stinging sensation. What the doctor meant was that it was likely not cancerous.

My meeting with the facility doctor led me to an appointment with my primary care physician. His prognosis was that I had a snapped tendon in my right hand and that surgery was the only option to repair it. The doctor then referred me to a hand surgeon for further investigation.

My appointment with the hand surgeon came and went. She diagnosed me with carpal tunnel syndrome (CTS) and Dupuytren's Contracture (DC). I received a cortisol shot at the base of my wrist to alleviate the issues with CTS since it was at its beginning stages. Unfortunately, there seemed to be nothing I could do to deal with DC.

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What is the origin of Dupuytren's Contracture?

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Image by Arek Socha from Pixabay

Dupuytren's Contracture is a form of arthritis that affects the connective tissue of the palm. A nodule of connective tissue forms beneath the skin and travels along the length of the palm. Eventually, the fingers of the palm get forced toward the palm itself, rendering the hand non-functional.

The National Institue of Health describes Dupuytren's Contracture as "an ancient affliction of unknown origin". Legend has it, however, that the disease started as an ancient curse in 16th century Scotland.

The Curse of the MacCrimmons

Gangs associated with the Scottish clan MacCrimmons murdered a window's son. The MacCrimmons were the official pipers to the clan MacCleod in Dunvegan. In the widow's grief and despair, she cursed the clan MacCrimmons so their hands would crimp to the point of non-function. The result would be that the MacCrimmons could not be the official pipers of the MacCleods. The malady cursed upon the MacCrimmons would then force them to leave the isle of Skye.

The Vikings

Dupuytren's disease was also present among the Vikings. In the 8th century, they landed on England's east coast to make a home for themselves. And with them came the same illness of the hands described by medical documents. As the Viking's settled across the land so then did the disease spread among ancient Europeans.

Ultimately, no one really knows how the disease started, but there are records detailing the condition since about the 8th century. Interestingly enough, genetic studies involving Dupuytren's is narrowing down the specifics on how the disease is both caused and develops.

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Who does the disease affect?

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Image by Elliot Alderson from Pixabay

The illness seems to affect those of Northern European descent primarily. Southern Europeans are marginally affected, and the disease is rare everywhere else. It's an interesting observation, as even though I was born in Puerto Rico and my family was raised there, it suggests that my lineage came from Europe.

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How do you treat the disease?

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Image by Gerd Altmann from Pixabay

There is no clear-cut cause of the illness, and no cure exists to cure the problem or prevent its recurrence. Eventually, I will need surgery to allow my hands to move again once they stop functioning.

Fortunately, though, there are treatments available that can at least slow its progression.

Enzyme Injections

Doctors can inject a collagenase solution into the hardened parts of the tissue building up in your palms. The enzyme will act to break down that tissue allowing a doctor to stretch the fingers back into a normal position.

Radiation Therapy

Doctors can direct low-energy X-rays onto the hardened nodules that form under your palm. Results of radiation therapy seem to have a positive impact on the progression of the disease. I'm pretty impressed with its results and plan on discussing this with my doctor when I next see her.

Needling

Needling is a minimally invasive procedure where a doctor uses a needle to break apart the connective tissue in your palm. It's the treatment option you take before full-blown surgery. For some reason, I'm not too happy about this option. I don't like the idea of having surgery on my hands.

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Psyber X Approaches

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In Closing

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Image by Gerd Altmann from Pixabay

Thank you for reading and following on throughout my Hive journey. I'm curious if anyone else has the same condition as I do. How has it impacted your life? Has anyone gotten surgery or any other treatment? If so, how were the results?

My right hand feels like it's constantly being pinched in the palm. Icing it helps and seems to bring down any swelling that occurs. I'm waiting on approval to get a nerve study done on my hand. After the study is complete, I'll meet up again with the surgeon to discuss some of the treatment I mentioned.

If you like this article, please consider reblogging, upvoting, and following @scholaris!

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Because you didn't already have enough fun in your life, eh? 🤦‍♀

I'm so sorry to hear about your diagnosis, but it does sound like you've got a good idea of the road ahead and how to potentially manage things, which is half the battle. I was in the midst of trying to figure out more about my Essential Tremor in early 2020, but had to pause because... well, I bet you can guess. Now that the appointment logjam is better, I really need to start working on it again.

As always, sending loads of good juju to you and yours. Hope you get some relief (in all the things!) soon. 🤗

Thank you very much for the good juju Traci!

I think I'm good. My hands hurt as I type this, but it's a part of life. My father had the same thing I did. The difference was that he didn't even know he had it until his hands weren't working properly. He needed surgery to cut out the thick cords. We had no idea it could get passed on to me or my sister. Fortunately for her, it's rare in women.

It's weird to say this, but if it wasn't for Carpal Tunnel Syndrome (CTS), I would have ended up in the same boat as my dad. I can open my hands fully, but there's a resistance to it that wasn't there before. The surgeon said that the CTS caused the Dupuyten's disease to flare up. I caught it right in the earliest of stages. This means that treatments like collagenase and radiation therapy would work.

Surprisingly, the radiation therapy seems to be the most effective of the bunch. There's a low probability of recurrence following treatment. Oddly, surgical treatments tend to have a recurrence of 40%.

I did become fascinated about the lore surrounding the disease, however. My wife is tired of me bragging about my Viking/Scottish Lord heritage. After I told my dad about my research, my mom scolded me because my "high-lord" father is demanding breakfast in bed. So, some good and laughter came from all of this.

I hope you can get things squared away on your end. Sending you good juju as well.

Omg, I'm wicked giggling at the "high-lord" thing, and apologies to your wife but I would totally be milking that myself! 😂

I know everyone has different ways of dealing with things, but for me, it's the laughter that gets me through. Like if we're out shopping and I'm having a tremor episode (which thankfully hasn't happened in a while, because I've been figuring out ways to manage), my husband will start doing some little dance moves and say something like, "hey, why should you be the only one having fun" (or the line from Buffy, "Look at me, I'm dancing crazy!"), which gets us both laughing (and usually gets giggles from people around us).

You've now inspired me to see if I can find some good lore behind ET, and use it to my advantage with my family... 😉 😁

As for the surgical route being the least effective, that actually makes sense to me. I'll spare you the details of what I discovered about another condition I had before my hysterectomy, but given that surgery is by its nature an invasive procedure, and the body tends to scar when healing, it tracks that it might inadvertently trigger growth in the very thing it is trying to remove.

I hope whatever route you go, it works well for you.

@scholaris nice to see you again but it would be better in other circumstances. I'm so sorry to hear about the diagnoses. I hope they can figure out a treatment for you and make everything possible to get you better. Fingers crossed.

It's nice to see you too. It's all good. I'm glad to have been informed about this so early. It looks like radiation therapy is the best treatment available in the early stages of this illness. It is purported to not only eliminate the tough connective tissue, but also preventing it from recurring again. I just need to find out who can do it and where they are near me.

You're right, at last there's a cure for that, or they can stop it from aggravating. I wish you all the best and stay strong 🙂

Thank you very much!

My former manager's husband had some kid of condition where his hands stiffened over time and clenched into fists he couldn't open. Is that likely the same issue you describe? In my family, extremity issues are more likely to be related to diabetes and neuropathy.

Greetings and thank you for commenting. I believe you've described the same condition. The same thing happened to my dad. His hands required surgery to regain their function. I caught mine as the nodules started to form. I think I caught it early enough to take advantage of collagenerase injections or radiation therapy. I'm waiting on callbacks from my specialist so I can move forward with something pretty quick.

My mother is diabetic and a former smoker. My dad never smoked and doesn't have diabetes. It also doesn't run in his side of the family. The guy has always been healthy AF so doctors could only say that it was a genetic thing. About the only thing I can do at the moment is special hand exercises with the hope of slowly the progression of Dupuyter's disease until I can get treatment.

hi Felix ❣️ I had not heard of Dupuytrens before this article, so thank you for having the courage to talk about it. I'm really sad to hear of your diagnosis but from everything you have said, in your post and in the comments, it seems like there is a medical solution that may be permanent, as you caught it early 🙏 Thank heavens for that! I hope you are not in too much pain and that you can get started on radiation treatment soon if that is the route you choose to pursue. Please keep us updated as to how things are going and I'll be praying for a quick recovery for you. Much love xx !LUV !PIMP !PIZZA


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I definitely want to pursue radiation therapy. I just need to find out if it's offered near me or what it would take to get it. I'm icing my hand daily. It feels like it's on fire. It started growing on my left hand, but it hasn't started spreading yet. I can't fully open my right hand without resistance. When I do my hand stretches on my right hand, I feel like something is tearing in my palm. Meh, everyone has to deal with stuff. Thank you for the prayers!

💗

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Good to see you posting again. Sorry to hear about your condition. I haven't personally encountered anyone that has it and I only get to know about it on medical textbooks brushed off as under diseases in connective tissues. Hope you're doing well. Since there's a hint of it being genetic, might be something to bring up to the younger members of the family.

I think my sons are screwed, but then again, it can oddly skip generations. I told my sister and she’s aware though as her son hasn’t exhibited any problems. Thank you for the kind words. Given its Viking and Scottish royalty lord history, I’m trying to capitalize on it with the Mrs, but she’s too salty at this time.

Well that sucks 😭

What about prp (platelet rich plasma)? Have you looked into that? Dunno, maybe it's something that could help in your case.

I guess typing is a bitch for you. I used to use androids voice to text a lot when I had a really tough time with my lateral epicondylitis

Typing is uncomfortable right now, but it hasn’t become a true nuisance yet thankfully. I haven’t seen PRP as an optional treatment so my guess is that isn’t hasn’t been evaluated yet. I mean they had since the 8th century to figure it out. Not like there wasn’t time available.

My job bought me a bunch or ergonomic equipment though and it reduced the areas of typing a bunch. I’m pretty good for now. I think radiation therapy is the key for my problem though as I caught it early.

Odd though. My surgeon said that she didn’t agree with the radiation therapy. When I told her I could build the treatment myself without her help I started getting movement on my case.

Glad you are coping well. Best wishes 😃

Best wishes to you as well! Thanks for the kind words.

So sorry about this here is my first time hearing about Dupuytren's Contracture.
And I just hope it does not deprive you of doing what you love.
You stay solid, sending lots of love ❤️ ❤️ ❤️

Thank you very much. I appreciate all the love. What I love is taking care of my family. I think I can accomplish that for the foreseeable future given what I've learned about the affliction.

thanks for explaining this to us. My great aunt had arthritic hands that closed up like this. I don't know if it was ever diagnosed as Dupuytren's but it certainly fits the bill.
Hearing some of the folklore behind the disease was interesting.
best wishes on choosing a path forward to alleviate its progression

Thank you for the best wishes. I'm going to seek out radiation therapy and see where that takes me. According to my doctors, they haven't heard of a case that occurred too early. It normally happens with the elderly and the result is sudden. It's the way my dad's hands ended up deformed. He never even knew he had it.

Oh, I forgot to add that Dupuytren's disease (DD) isn't the only ailment that would cause hands to close up as I described. While DD can cause the hands to close inward on itself, there are images on the internet that shows fingers bent outward for those suffering from DD.

I think Rheumatoid Arthritis (RA) also causes the hands to fold inward. My wife's friend is a cop in NJ who has RA. It's a nasty ailment. She's got to take all sorts of stuff to have a normal life.

Oh yout lineage came from Europe?
Wow that's good to hear...

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Yeah my doctors were adamant about it. The numbers tell me that 68% of cases originate in Northern Europe. That number drops to the 20% range in Southern Europe. Everywhere else it’s either single digits or almost zero.

Oh dear! I'm sorry about this, so heartbreaking. Sending you love and rooting for you to continue to manage and rise above.💜
Here from Dreemport.

Thank you for your kind words. I've just started on the path now towards recovery. I'm meeting with my specialist again on Monday to speak about treatment for early Dupuyter's disease. Unfortunately, I think it's just a placeholder. She already told me there was nothing I could do until it was too late. Fortunately, thanks to the internet, I found facilities that provide the radiation therapy I seek. It's only a couple of hours away from me.

That's great news. It is impressive how much work you have done, taking charge and arming yourself with tools and information. So, will the radiation therapy help now or it'll still have to get worse?

This is a lot, I hope you have all the support and love you need, and don't be too hard on your hand because knowing how much you depend on it, it'll be difficult to accept that it is now choosing not to play ball.

It’s difficult to accept it, but I need to respect it too. The UK provides low energy radiation therapy and it has good results. I found a center that does something similar only a couple of hours from me. Now I need to get through the medical system to make it happen near me.

Okay! Good luck with everything. 🤍

Hi @scholaris . I am extremely sorry to hear about the medical condition you are passing through. It is so challenging to have a limb non functional. I have had stinging and prickly sensation for several months in my hand. Typing became a tough job for me. Things started dropping of my hands. I feel for you so much.

You are a courageous man who endures challenges with bravery. I wish that you get rid of your pain soon and be able to work at your best.

God bless you

Thanks Amber. I hope your problems get resolved soon as well. Please get your hand checked out.

My hand is better. I hope you would also feel better.
God bless you

You as well. Thank you

Interestingly enough, genetic studies involving Dupuytren's is narrowing down the specifics on how the disease is both caused and develops.

My prayers are with you :( I know it's vital that you are able to type, and I have faith that you will make a good recovery. Is there any way to get it sorted permanently before your hand stops working?

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Thank you for the prayers. Exercises are available to stretch out your hand for this condition. I’m doing them daily now. There are also treatments available for the diseases early stages before surgery becomes mandatory.

My problem now is getting that treatment. I feel I might have to take what’s available to slow it’s progression. We will see what the future holds.

Maybe also look into herbs and alternative medicine? I really hope you won't have to have major surgery!

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Mehn! How did you type😩😩😩
Goodness God! I hope a miracle come your way be it through the aid of treatment or any form it takes. Do you use google voice to type...that should help for now...or a keyboard. I haven't heard bout such sickness before it's my first time.

You are courageous and brave enough to write this article...now it has been affecting your left hand as I read through the comment section . I hope there wouldn't be an amputation of those hands. First I wish this would have a cure but certainly things would try turn up fine. Use other treatment and method to reduce the pain it causes you....stay safe...be happy..be hopeful regardless...love ad light💓

I’m typing ok right now. My job didn’t screw around because of all the workman’s comp related to carpal tunnel that happened during COVID. I had to get an ergo eval at home and work. They gave me ergonomic equipment that really brought the physical stress down of constant computer work.

Also, the specialist I saw gave me a wrist splint to use and an injection or cortisol into my wrist. The disease spread into my right hand and started forming on my left. Fortunately my fingers haven’t been restricted yet, but I do have resistance when I try to open my hand fully.

Finally, the hand exercises I’m doing painfully stretches the tissue in my hand allowing me continued movement. Family has to eat, so I need to work.

Hey @scholaris. Today, while curating, I came across a post about carpal tunnel syndrome, that rang a bell. I wasn't sure if that was the name of the diagnoses you mentioned, but checking out your post it seems I was right.

Please check out @thisismylife's post here ->
https://peakd.com/hive-196233/@thisismylife/carpal-tunnel-syndrome-sucks

Maybe you can connect and help each other with info.