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I am brand new here, & desperate for an answer
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06/30/2012 00:53
Metzie 
06/30/2012 00:53
Metzie 
I am brand new here, & desperate for an answer

Hello,

I have Ledderhose on my right arch the size of a grape. The center toes hurt at times with stabbing pain. I also have Dupuytren's on both hands, however, I was wondering why many say to AVOID surgery at all costs regarding Ledderhose?....Why?...Could someone please explain to me why this is considered a No No with Ledderhose?....I am very curious as to why this is a bad idea. I have read many threads, but I haven't found a straight answer as to why many avoid surgery. I feel so bad that so many are suffering so badly with their condition. I am not there yet, but for me, if I were suffering greatly from it, I know I would ask to have my foot amputated. My father was a double amputee, and did just fine in life. My father was a strong man, and I learned a great deal from him. If my Ledderhose causes me great suffering after multiple failed proceedures, I WILL have the foot cut off! I refuse to suffer with any part of my body causing terrific pain, that's just me, my opinion, and believe me, I would do it. There is no extreme measure I won't take to free myself from pain. Thanks to all who answer this puzzling question, Metzie.

Edited 06/30/12 03:56

06/30/2012 03:55
flojo 
06/30/2012 03:55
flojo 
Re: I am brand new here, & desperate for an answer

Hi,

This Dupuytren's and it's relatives, Ledderhose and Peronie's are bad. Sorry you had to become acquainted with them.

I have Dupuytren's but not Ledderhose. It is my understanding with both that trauma to the area seems to make it worsen or progress faster. Surgery is definitely a trauma to the area. They may be able to dig all of the diseased tissue out of the hand, but digging into the feet is more difficult.

Are you considering radiation therapy? If yours is active, you would probably be a candidate for RT. Several on this Forum have had their Ledderhose arrested by having radiation therapy. Personally, that's what I would do, but then I had successful RT on my hand. It stopped the progression in the area radiated. Some nodules have occurred outside the radiated area, but they seem to be keeping isolated. I plan to have RT on my other hand since it developed nodules. I expect to start that radiation therapy this month.

Luba, a Forum friend, has both Dupuytren's and Ledderhose and she had RT on both. It seems that RT was fully effective on the Ledderhose. She would be a good one to connect with. You could use the "Search forum" or send her a private message using this website.

06/30/2012 08:56
Gary1987 
06/30/2012 08:56
Gary1987 
Re: I am brand new here, & desperate for an answer

Hi,

I have ledderhose and I have avoided surgery. I think one of the main reasons it is avoided is because it is very invasive, can have long recovery times and it often grows back (frequently worse). Many people therefore decide to go for radiotherapy as it requires no recovery and has a greater success rate (I think it is something like 80% have problems or it coming back after surgery and in 80% of cases radiotherapy helps).

I have spoken to several people who have had radiotherapy and I think this quote helps sum it up, was in response to me asking them about the surgery for an interview for my blog..

"The surgery was 2 and a half years ago and yes almost immediately the lump grew back right underneath the incision, by 2 months after the surgery the Doctor knew it was back. The pain and the lumps are worse since surgery."

For me it just made sense to avoid this option when there are other things to try first, once you have had the surgery that is it you have had the surgery and your foot has been cut on but with things like radiotherapy the increased risk of cancer is so small that even at 25 I thought it was a better option.

Hope that helps a little bit.

Gary

06/30/2012 10:13
ellensmum 
06/30/2012 10:13
ellensmum 
Re: I am brand new here, & desperate for an answer

Hi - i am the mum of an 8 year old with ledderhose in her foot. we have dups, & ledderhose in the family on both sides. My daughter 'aquired the pf on her foot after catching her foot on a carpet gripper rod at the age of around 18 months 2 years. Our specialist has said that these are (alot of the time)born out of scar tissue not healing properly. Because the lump was growing and at the time we didn't know what it was it was removed by surgery, within 6 months it was back and bigger. We are lucky with Ellen in some respects though because as her feet have grown the pf has got smaller & flatter. We did have a hard year with her last year as she grew nearly 3 shoe sizes & for her it is worse when her feet are growing. I would not point blank have surgery done on her again - in my mind if you cut it out there will be more scar tissue, and so increase the chance of it regrowing.

I have her in good quality shoes - at the moment she is in fitflops which give her excellent support on her arches.

Alot of this is only my opinion but thought my views may be of help.

There is so many friendly helpful people on here you will get support & good luck with what ever you decide to do

Zoe x

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