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Husband recently diagnosed - explains so much, but we're beside ourselves
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08/28/15 15:30
LedderhoseWife 
08/28/15 15:30
LedderhoseWife 
Husband recently diagnosed - explains so much, but we're beside ourselves

Greetings all. I stumbled across this forum while searching for answers. My husband has recently been diagnosed with Dupuytren's contractures in his hands, but the doctor also suspected that he has much more than "just" contractures. He consulted with an orthopedic foot surgeon and she confirmed that he has Ledderhose and DD both.

He is an auto mechanic by trade, and all these years we thought the big gnarled lumps on his hands and his curved fingers were from wrenching and using power tools all day. His knuckles look like radishes they are so deformed. Over the last few years, he began growing the fibromas in the soles of his feet and they look like big fleshy pillows now. We thought that he had fallen arches from standing on a concrete floor, bent over a car all day, but it is the Ledderhose.

The surgeon said she does not recommend attempting to remove the fibromas as they will just multiply and grow back worse. What I've read so far on this website supports her decision. She does, however, want to do a total foot reconstruction. His left foot has structural issues and he walks on the outside of his feet, and he also has a big fifth metatarsal bunion. She told him after the foot reconstruction he'll be out of work five months minimum and she does not recommend he go back to working on cars.

We just don't see this happening. I'm starting to think we should consult an attorney about his going on disability. We are besides ourselves over this - and yet, the diagnosis is making everything make sense, if you know what I mean? The lumps, the wondering "what is happening to me," and the other things I've learned about LD here - his shoulder problems, crooked fingers, numbness and tingling in his hands.

And I'm thinking back on his Mom - she had huge gnarled hands and feet, and she also developed diabetes in her later years which progressed horribly on her to the point she died from it. I have RA and we thought that was enough of a curse - and now this. And the most horrifying thing is, our 33 year old son showed us his palms last weekend and his ring finger tendons are all dimpling.

Oh well - thank you for listening. Has anyone here had to go on disability? We are both workers despite our challenges, but my husband is not a desk person or a people person, cars are all he knows. But when your hands are shot and you can't stand anymore ... what options are there? We're almost 60, it's way to late to learn a new trade. It just feels like the rug is being pulled out from under us, two blue collar people who live paycheck to paycheck. What a retirement we have to look forward to now. :(

08/28/15 16:07
Seph 
08/28/15 16:07
Seph 

Re: Husband recently diagnosed - explains so much, but we're beside ourselves

Hi LedderhoseWife; I can relate to a lot of what you describe as I have both LD and DD. In addition my father was a motor mechanic and he also thought the problems with his hands were caused by working with tools.

We never connected what I developed as a teenager with the issues in my fathers hands as my issues started in my feet. I wasn't diagnosed properly until my early 30's and even then my father would not accept that we had a common genetic condition.

Sounds like your husband has been dealing with this for a while. All that has changed is that you now have a diagnosis. And it sounds like you have the correct diagnosis.

I'm not the love hug type so I apologize if I seem a bit blunt. What follows is my view on how I would deal with things and there is no way that I could know that it will work for others.

First the feet. A total foot reconstruction sounds extreme and frankly a bit weird. My view is that the pain in the feet is caused by tendons and nerves being put under pressure by LD mass. I would start by trying to stretch the tendons. Lots of heal raisers and push through the pain.

My LD used to cause me a lot of problems but I chose to press through. I would force the pressure where in hurt the most and one day it was simply gone. I have now had LD for 45 years and I am fully active.

With the hands I suggest you consider NA. In 3 weeks I will have my 4th procedure on one hand and my 5th on the other. With luck I will regain movement for another year or two. Then I will do it again.

Many people on this web site also head down the xiaflex route. That is not the path I am taking but it might be right for you.

Most important - Don't let the DD or LD get in the way of anything that you want to do. Don't let it become an excuse. You don't die from it so it is just a matter of management.

Your son should study up and make decisions early as it sounds like he is heading down the same path.

08/28/15 16:41
LedderhoseWife 
08/28/15 16:41
LedderhoseWife 
Re: Husband recently diagnosed - explains so much, but we're beside ourselves

Thank you for responding Seph, no apologies necessary for being blunt! Answers are what we need. I give the hugs. I will share your methods of living with it with him.

No, we are not keen on the surgery. They called to ask if he'd scheduled it and he said he hasn't even had time to digest the thought of it. He's going to start with orthotics at the orthopedist's office.

May I ask, what is 'NA?' I would like to research that further.

08/28/15 18:53
JohnG 
08/28/15 18:53
JohnG 
Re: Husband recently diagnosed - explains so much, but we're beside ourselves

LedderhoseWife:
May I ask, what is 'NA?' I would like to research that further.

Welcome, LedderhoseWife.

The abbreviation NA = needle aponeurotomy. It's a simple procedure, not very invasive, for cutting cords in the hand to relieve the contracture, i.e, curling of the fingers. I don't think it's used much for nodules or feet.

Another abbreviation you'll see a lot in this forum is RT = radiotherapy, which can be a good option for shrinking any nodules in the hands or feet.

You can read more about NA and RT under the Treatment tab at the top of this page.

Practitioners for NA and RT are much less common than for surgery, but the procedures are attractive partly because they have such minimal side effects and disturb your daily life very little. So many patients will travel to get that therapy.

Did anyone tell your husband whether his knuckles have "knuckle pads"? That's another related condition - you can read about that under the Disease tab at the top of this page. You mentioned the appearance of his knuckles -- that's why I mentioned that.

Edited 08/28/15 18:56

08/28/15 20:47
LedderhoseWife 
08/28/15 20:47
LedderhoseWife 
Re: Husband recently diagnosed - explains so much, but we're beside ourselves

JohnG, thank you kindly for the clarifications and tips. I don't think the two physicians that have looked at him are savvy enough in LD to have thought about the knuckle pads, but I did see on my own research that that is another gift of Ledderhose and I do believe he has those. Come to think of it, those were his first symptom, starting many years ago.

I am going to scour the web and locate a specialist on this disease to evaluate him before anyone cuts on him. It's imperative to me that we have answers as now my son's health is also at stake.

08/28/15 23:14
spanishbuddha 

Administrator

08/28/15 23:14
spanishbuddha 

Administrator

Re: Husband recently diagnosed - explains so much, but we're beside ourselves

Hi Ledderhose wife

It sounds like you are in the US where treatment possible depends so much on the insurance available.

However in general terms, avoid foot surgery for LD. Conservative treatment using orthotics is the first call, maybe RT for earlier cases with pain, and in the US Cryotherapy has some success where available.

For DD before contracture then RT can be effective, and similarly we would suggest less invasive (non surgical with knife) treatments such as NA or Xiaflex, before surgery. Surgery can be effective for advanced cases, but you need the best and most experienced DD surgeon you can find.

Knuckle pads are rarely treated since they rarely become a problem apart from aesthetics.

The difficulty with most interventions, other than RT, is that they may cause further disease progession. May not too. It's impossible to predict.

As Seph says you end up managing the condition using whatever works best for you. So there is hope but your husband and sons journey to a resolution is just starting.

Read up more, ask questions, explore, there is a FB group where patients support one another although it is unmoderated, and you need to draw your own conclusion based on advice given there.

Best wishes SB

08/29/15 19:46
newman 
08/29/15 19:46
newman 

Re: Husband recently diagnosed - explains so much, but we're beside ourselves

Hi I would not dismiss the use of radiotherapy for the ledderhose for the feet. I was diagnosed back in 2000 having gone to a specialist ,who recommended NOT to have surgery. In 2007 I was in Germany and was treated with Radiotherapy 30 Gy to both feet. After 6 months I did away with wearing the orthodics, which were prescribed by a podiatrist back in 2000. I would recommend only wearing good quality lace up shoes or boots, that have soft removal innersoles. From time to time I use a crème containing urea.

09/01/15 22:27
DrumHeadGuy 
09/01/15 22:27
DrumHeadGuy 
Re: Husband recently diagnosed - explains so much, but we're beside ourselves

Hello wife of Ledderhose husband:

I can help you with advice. I used to go by "drumhead" on this Forum, and I've posted several comments over the years. I am too familiar with your despair. I've had DC on hands (8 hand surgeries) and Ledderhose (severe) on both feet for over 25 years. I've been thru it all. And, I can tell you what does work (IMHO) and what does not - or what you should NOT do.

I tried all the treatments and finally my hands-fingers got so bad, I had a series of surgeries - two times, the nodule came back, but now they are all gone. Only one finger is bent for good and a bit numb. Now, my feet are another story. I finally got my Insurance to agree to Radiation Therapy and I went to Drs. Herman and Matthiesen at OU Oncology in Oklahoma City. In January 2011, I got my RT and it has helped. For the 10+ nodules, the first two years they softened some, and no new ones. Now, it's Sept 2015 and I have two new nodules, but on the outside of feet! Not where the RT was. So, this should tell you that this stuff will find a spot if it can. My feet still hurt everyday, but I've avoided ANY surgery as it can really mess you up BAD! Especially if the nodules come back - recurrence is in my system, so with all the nerves, tendons, etc, AVOID surgery at all costs. IMHO, that is a RULE! I've heard of the horror stories of botched surgery on Ledderhose and I've only met ONE Dr. that had even heard of it!!

I see you mentioned Disability. I worked 45 years in a Family Biz, otherwise, I don't think I could have made it that long. I paid in all my SS taxes, and after RT I thought maybe it would go away. No such luck. But, I found an excellent couple of Specialists for Pain and I do go to a Psychiatrist due to years of untreated chronic pain. Untreated pain can cause changes in the brain, and can lead to Depression - it did in me. So, I've taken some sort of pain meds for over 10 years now. It has helped my quality of life. I still hurt due to where my nodules are and the fact they got large before I finally found help - anything to help me deal with it. I do know this: You can find a Pain Specialist and you will have to 'educate' them, get tests, MRI, X-rays, EMG, and once they see you do have issues, they can help you. Forget the stigma with pain meds - if your husband is hurting, then get help.

You CAN get Disability. I don't know how exactly the SS Examiner determines severity, but I am on SSD, but I'm also dealing with other health issues on top of Ledderhose disease. ADHD, depression, had a skin disease (now better) and back issues. I applied and did get SSD. I'm part of a Study being done at OU, so that was probably a factor. I haven't gotten the Study yet, but I am wanting it - to see how effective RT has been for others. Don't give up, but don't cave in and get surgery on the feet. The results from this are not good - I think, because the Dr. can't get all the fibrous tissue out and messing with the nodules only seems to make them 'angry'. Plus, lots of chances for infection and well, I would not advise it. I'd rather treat the pain and even tho it is an every day (and every month trip to Dr.), it helps. Yes, you (or your husband) will have to go to Dr. once a month (the new Laws) and get random UA tests. But, it sure beats the constant, steady pain and, again, the brain is neuro-plastic (neuroplasticity) and it means that negative issues with pain can cause mental problems if untreated. There is a lot of info online about untreated chronic pain. I didn't realize any of that until I went to Psych Dr. and he educated me on how it all works.

I didn't read all of your post, but will - but, you can file for Disability, SSD, and if he has had to stop work, then have all paperwork, insurance, everything to submit if you file for disability. This stuff is genetic, progressive in most people, and varies from person to person on how it affects them. One bit of advice - I had a superior Law Firm that deals with Disability cases and it took about 7 months from the time I filed to approval. I don't know if I can state who I used on this Forum, but they are in Minnesota and are a "Premier" group to work with. I kept a weekly file of my Dr. visits, tests, etc, all my history and submitted everything. I don't know what I would have done if I had not gotten approval. It was getting rough, but there are several diseases that are on the SSA list that, more or less, can get approved if you have one of them. LD might be one of them, I don't know. I am SO SO SO thankful to the SSA Medical Examiner for being so thorough and looking into my journey with DC-LD and my other health problems.

Tell your husband to hang in there. You can always contact me - also, find my other posts (under "drumhead") as they chronicle my history, a sort of timeline. And, this Forum is a wealth of knowledge and support. Just my advice for you - I understand. DrumHeadGuy

09/01/15 22:56
DrumHeadGuy 
09/01/15 22:56
DrumHeadGuy 
Re: Husband recently diagnosed - explains so much, but we're beside ourselves

To Wife of Husband with LD:

Hi, me again. I forgot to tell you a couple of things. Things that made my condition WORSE = shots of any kind, orthotics caused blisters and I never could get shoes to fit with them - so I suggest a GREAT pair of ASIC running shoes, with lots of cushion and Thorlo socks! Physical therapy made my feet sore as Hades and seemed to cause more pain, felt like something was breaking in my tendon. Then, I'd get cramps in feet at night. You can do some things, but if you/he takes something for foot pain, just remember this - the more he does, sometimes? He will pay for it the next day. Not with everyone, but with me. I think it depends where the nodules are.

You will probably NOT find any Dr. who fully understands this disease. Some think it doesn't hurt - wrong! Again, it depends on where, how many, etc nodule size, it varies. One size does not fit all. But, my PIP (knuckle pads) were the sore type and the bumps got very big - I would wince at sticking my hand in my jeans!

Also = a couple of people said something that I believe is related to DC and LD - it may have something to do with repetitive activity. I have been a drummer for 50 years and both hands and feet endured a lot of vibration, pressure, and if you have the genetics for this stuff AND you do something that involves hands-feet? It may, in some way, make it worse. Seems to be a connection there for some people. I also was a runner (20 miles a week) and that pounding might be the reason my feet are so bad now. I don't know. maybe?

So, the only Cortisone shot I had was my last! OMG, it hurt so bad and didn't seem to help me at all. Plus, stretching seemed to help at first, but like I said - the next day was like I walked for miles. So, he can tell you if he experiences this. And, yes, sorry to say, your son? He might get this - but, if he starts in the feet, the sooner to get RT, the better. For me, when the nods first came up, that's when they burned the most - and I noticed after I ran, the burning would be so bad, it would itch. I walked on the sides of my feet (avoidance) but, careful with that - it can cause knee and back-hip problems from walking that way.

Just remember - everyone on here is trying to help - but, what works for me or someone else? Might not work for your husband. But, try different things - and avoid things known to NOT work or to make things worse. And, don't get frustrated from the trouble finding a Dr. who is knowledgable as this stuff is rare. Dr. Herman couldn't believe Dallas didn't have an RT facility - that might change once places like UTSW Medical finds more people with these diseases. I appreciate the offer for hugs, but not necessary. I'm just glad to help if I can. I hope you find some relief for your guys and tell them it won't kill them, but it's no walk in the park, either. I would also tell you to be wary of any medical professional that says they know how to make this go away. The worst offenders seem to be ORTHO Dr.'s who operate. But, that's what they do. Sometimes, and in the case of LD (IMHO), surgery is the worst thing you could do - just asking for complications. Like removal of complete Fascia or even an infection leading to amputation! Not trying to scare you, no, just making you aware of what CAN happen. It was explained very well to me: LD and DC are a little like Cancer in how they replicate - if you cut on Cancer? It seems to spread and come back worse - RT kills the way this replication works, it removes an X or Y needed to grow the nodule and stops growth and hopefully, any new ones. OK, that's all I wanted to tell you. You have some A+ comments and I agree with them. Best of luck to you and your family - DrumHeadGuy

09/02/15 03:24
Cherise 
09/02/15 03:24
Cherise 

Re: Husband recently diagnosed - explains so much, but we're beside ourselves

DrumHeadGuy:
Hello wife of Ledderhose husband:

I can help you with advice. I used to go by "drumhead" on this Forum, and I've posted several comments over the years. I am too familiar with your despair. I've had DC on hands (8 hand surgeries) and Ledderhose (severe) on both feet for over 25 years. I've been thru it all. And, I can tell you what does work (IMHO) and what does not - or what you should NOT do.

I tried all the treatments and finally my hands-fingers got so bad, I had a series of surgeries - two times, the nodule came back, but now they are all gone. Only one finger is bent for good and a bit numb. Now, my feet are another story. I finally got my Insurance to agree to Radiation Therapy and I went to Drs. Herman and Matthiesen at OU Oncology in Oklahoma City. In January 2011, I got my RT and it has helped. For the 10+ nodules, the first two years they softened some, and no new ones. Now, it's Sept 2015 and I have two new nodules, but on the outside of feet! Not where the RT was. So, this should tell you that this stuff will find a spot if it can. My feet still hurt everyday, but I've avoided ANY surgery as it can really mess you up BAD! Especially if the nodules come back - recurrence is in my system, so with all the nerves, tendons, etc, AVOID surgery at all costs. IMHO, that is a RULE! I've heard of the horror stories of botched surgery on Ledderhose and I've only met ONE Dr. that had even heard of it!!

I see you mentioned Disability. I worked 45 years in a Family Biz, otherwise, I don't think I could have made it that long. I paid in all my SS taxes, and after RT I thought maybe it would go away. No such luck. But, I found an excellent couple of Specialists for Pain and I do go to a Psychiatrist due to years of untreated chronic pain. Untreated pain can cause changes in the brain, and can lead to Depression - it did in me. So, I've taken some sort of pain meds for over 10 years now. It has helped my quality of life. I still hurt due to where my nodules are and the fact they got large before I finally found help - anything to help me deal with it. I do know this: You can find a Pain Specialist and you will have to 'educate' them, get tests, MRI, X-rays, EMG, and once they see you do have issues, they can help you. Forget the stigma with pain meds - if your husband is hurting, then get help.

You CAN get Disability. I don't know how exactly the SS Examiner determines severity, but I am on SSD, but I'm also dealing with other health issues on top of Ledderhose disease. ADHD, depression, had a skin disease (now better) and back issues. I applied and did get SSD. I'm part of a Study being done at OU, so that was probably a factor. I haven't gotten the Study yet, but I am wanting it - to see how effective RT has been for others. Don't give up, but don't cave in and get surgery on the feet. The results from this are not good - I think, because the Dr. can't get all the fibrous tissue out and messing with the nodules only seems to make them 'angry'. Plus, lots of chances for infection and well, I would not advise it. I'd rather treat the pain and even tho it is an every day (and every month trip to Dr.), it helps. Yes, you (or your husband) will have to go to Dr. once a month (the new Laws) and get random UA tests. But, it sure beats the constant, steady pain and, again, the brain is neuro-plastic (neuroplasticity) and it means that negative issues with pain can cause mental problems if untreated. There is a lot of info online about untreated chronic pain. I didn't realize any of that until I went to Psych Dr. and he educated me on how it all works.

I didn't read all of your post, but will - but, you can file for Disability, SSD, and if he has had to stop work, then have all paperwork, insurance, everything to submit if you file for disability. This stuff is genetic, progressive in most people, and varies from person to person on how it affects them. One bit of advice - I had a superior Law Firm that deals with Disability cases and it took about 7 months from the time I filed to approval. I don't know if I can state who I used on this Forum, but they are in Minnesota and are a "Premier" group to work with. I kept a weekly file of my Dr. visits, tests, etc, all my history and submitted everything. I don't know what I would have done if I had not gotten approval. It was getting rough, but there are several diseases that are on the SSA list that, more or less, can get approved if you have one of them. LD might be one of them, I don't know. I am SO SO SO thankful to the SSA Medical Examiner for being so thorough and looking into my journey with DC-LD and my other health problems.

Tell your husband to hang in there. You can always contact me - also, find my other posts (under "drumhead") as they chronicle my history, a sort of timeline. And, this Forum is a wealth of knowledge and support. Just my advic

Very good!

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