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Early Intervention
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04/30/2010 15:55
marathon1 
04/30/2010 15:55
marathon1 
Early Intervention

I am a 42yo male marathon runner. I ran 18 marathons in the course of 2 1/2 years before I developed plantar faciaitis in my left foot. As I began to recover from that problem I developed a pea sized lump on the same foot. During this time I also developed 2 nodules on my right hand.

It seems from what I have read that I am in the early stages of both Ledderhose and Dupuytren disease. My hand, and my foot, specialist have confirmed this diagnosis. And my relatives have confirmed the family genetic predisposition.

It also seems that a majority of people feel that radiation treatment would be the best initial move to prevent/postpone the progression of these problems. I have an appointment with an oncologist in Bozeman, Montana in 5 days. He has apparently treated Dupuytren's with RT before.

I must admit, I am very scared. I really want to make a good decision about my care. I would love to hear from people who have used RT....both good and bad.

My podiatrist was suggesting surgery, but that sounds more likely to have both reoccurance and progression problems. My hand surgeon doesn't touch people until they have limited range of motion. He warned that radiation therapy was likely to cause a malignant carcinoma, and that at my age he would stongly advise against RT. My general practice doctor wanted to do aggressive cortisone injections. Do you see the trend!!!

I am of the opinion that if I went to 20 different doctors, I would get almost as many opinions. So I am asking all of you, who have the patient experience.

04/30/2010 23:19
SusanfromIN

not registered

04/30/2010 23:19
SusanfromIN

not registered

Re: Early Intervention

I am 44 and have been dealing with this since I was 30. My one foot has finally gotten quite lumpy, uncomfortably so. I also have dupuyten's in both hands and have had surgery on one of my fingers so far. I waited until I couldn't any more. However, there is a Xiaflex for the hands now that has been approved for palpable cords in the hands. My surgery was prior to approval of Xiaflex so that wasn't an option at the time.

My doctors that I have seen have told me to wait as long as possible esp. for surgery on the feet as I am sure you have read by now that the lumps can come back, the recovery is difficult, and that there are alot of nerves in the feet . . .

This past year, I also developed a frozen shoulder. Recently, I began trying to think about trying anti-inflammatory diet of some sort because I noticed in the mornings when I woke up that my hands feel tight or weird after eating out or eating what I consider to be really salty foods. I asked my physical therapist of foods might cause less inflammation and he suggested mediteranean. sp?

So I decided to try and limit my salt which helps. Then a few weeks ago, I started eating turmeric on roasted vegetables or chicken a couple times a week, eliminated caffeine free diet soda(aspartame) and switched to oolong teas. I have noticed a decrease in the sensitivity of the nodules and the inflammation in both my hands and feet. I am not sure which of these made the difference since my husband told me there were too many factors since I began them all at the same time. You might give it a whirl before doing anything drastic esp. since everyone seems to have recurrences. I have been a long sufferer and am active too although I don't run marathons! But I haven't had to do anything with my feet for 14 years so far. We are young. Our bodies produce too much scar tissue and it seems to return. I also feel like my body will produce more scar tissue to protect itself so I would only do the invasive things as a last resort.

05/02/2010 14:15
flojo 
05/02/2010 14:15
flojo 
Re: Early Intervention

What you are trying with you diet all sound like healthy changes. They certainly can't hurt and they might help your disease. I have been moving in that direction - limited salt, tumeric, fresh ginger tea, no aspartame, etc.
I did have RT and it stopped progression of Dupuytren's in the radiated part of my hand - the whole palm. A very low dose if radiation is used for non-cancerous radiation as in Dupuytren's. Age is a consideration. My understanding is that RT increase risk of cancer by about 1% or less after 25 years. To me, that is a very small risk, but at age 72 that would put me in my 90s however, longivity is on both sides of my family, so I expect to live to 100. At a younger age, it would be more of a consideration Quality of life is also a consideration at any age.
I am very glad that I made the decision I did and I'll have RT again if my Dupuytren's starts progressing again. I can only give you my perspective. Do the research like you are doing, come back to this Forum and ask questions, weigh all the factors and it will help you decide what is best for you. It's not an easy decision but getting all the info you can and understanding all the options helps.
For me, avoiding surgery was a serious consideration.

05/02/2010 14:29
flojo 
05/02/2010 14:29
flojo 
Re: Early Intervention

Also, read about Needle aponevortomy (NA) to release cords if you have them in your hands. Contact doctors under NA and RT in the menu on the left column of this page.

I had NA done before RT. NA was a piece of cake - a 20-30 minute procedure, 3 days of keeping my hand elevated, then removing the bandage and keeping Bacitracin on the puncture spots for about 10 days. I had NA while my contracture was still in Stage I and it immediately released the contracture.

RT does not release existing cords. It did stop progression and, more than I expected, the many nodules reduced in size or softened.

RT needs to be done when the Dupuytren's or Ledderhose is active. RT for releasing cords is most effective when contrature in in the earlier stages.

05/02/2010 14:38
jimh 
05/02/2010 14:38
jimh 
Re: Early Intervention

I'm just an occasional runner, at most 2-3 miles, but I've had ledderhose for over 10 years and I'm still running - and walking without pain. The progression has been very slow - I have 2 lumps in my left arch. So there's no guarantee that you will ever even have a problem.

Don't even consider surgery. Everything I've read over the last 10 years - from dozens of people - tells me that surgery is almost always a mistake and often a bad one. Radiation may help, although given the variability of the disease I don't know if there's any real proof.

I also have pretty severe Dupuytren's. Today, the preferred treatment is needle aponeurotomy, about which you can read quite a bit on this forum.

05/02/2010 16:12
LubaM. 
05/02/2010 16:12
LubaM. 
Re: Early Intervention

I had RT both for my Dupuytrens and Ledderhose last November. For my two nodules in my left arch, the RT was very successful. The nodules were like hard nice size marbles. After RT they are almost gone, you can feel them but they are flat and soft.

My left pinkie was very messed up. I had a 90 degree contracture on the PIP joint and in addition a boutonierre deformity on the DIP joint (the finger looked like a letter Z in reverse), both joints were completely stuck for years. I had NA on the same finger in 2006, but the contracture returned shortly after. In March I had another NA on the same finger, the PIP joint is at 15-20 degrees which is a great improvement, since PIP joint usually only corrects by 50%.

I also did RT on my left hand where I had multiple nodules, but no cord or contracture yet. I had active disease (itching and burning) both in my left foot and left hand.

Early intervention with RT is a great idea, for me it worked great on the Ledderhose, and on the left hand. The itching and burning has stopped in both and I am now much more pro-active in trying to stop this disease before any contracture occurs. I don't want the same to happen as with my right pinkie problem.

05/03/2010 02:28
jimh 
05/03/2010 02:28
jimh 
Re: Early Intervention

Sounds like some people are reporting good results from radiation.

05/08/2010 02:21
TangoGirl 
05/08/2010 02:21
TangoGirl 
Re: Early Intervention

TangoGirl..."Life isn't about how to survive the storm, but how to dance in the rain"

I had a cortisone injection for a nodule in my left arch in mid-March. It seemed to reduce the pain, swelling and inflammation, BUT only for about a week. Since then, I've developed a total of 8 lumps with daily pain. Some days I swell more and have more inflammation. Oy seems with this disease, every case is slightly different. I'm now awaiting MRI results and will consult on RT. At this point, I would be facing major surgery with reconstruction. I don't run anymore, but am an amateur ballroom dancer and don't want to hang up my shoes any time soon. I've continued dancing and used common sense. I feel that my foot hurts most of the time anyway, so I might as well continue to do something I love. If a step or dance hurts too much, I back off a bit. Good luck to you and keep us posted.

05/08/2010 18:08
jimh 
05/08/2010 18:08
jimh 
Re: Early Intervention

Over the last 10 years I\'ve read many reports of surgery for Ledderhose and success seems to be rare. Many people end up wishing they hadn\'t done it. The problem recurs fast and is often worse than before the surgery. I\'m aware that some surgeons claim success with a total removal of the plantar fascia, but to me that seems like a drastic procedure.

Based on what I\'ve heard I don\'t think I\'d ever consider surgery; but if I did I\'d definitely want to ask the surgeon some hard questions about outcomes and numbers.

Edited 05/10/10 05:18

05/11/2010 13:20
Larry 
05/11/2010 13:20
Larry 
Re: Early Intervention

I have heard good news from a German radiation therapist who is now practicing in HAMBURG;
his name is Prof. Seegenschmiedt; my cousin went there just a few weeks ago; apparently he is
a fluently English speaking kind clinician who knows exactly the typical signs and developments in
Ledderhose Disease. He has seen over 500 patients with Morbus Dupuytren which he also examined
for Ledderhose Disease - thus, he knows all the pre-stages of the serious problems which occur
during the development of Morbus Ledderhose or Morbus Dupuytren!

My cousin told me, that he treats only with radiation, if there is overt signs of progression such as

- increasing size of nodes,
- increasing number of nodes,
- symptoms like pain or walking difficulties.

He does not encourage do treat in a "dormant situation" without symptoms. His address thru internet:

http://www.imedo.de/practice/provider/sh...-seegenschmiedt

I hope this and the Web-Side (In German ) http://www.strahlenzentrum-hamburg.de/ is helpful

Good luck to all sufferers, Larry

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