| Lost password
376 users onlineYou are not loggend in.  Login
Ledderhose its a naughty disease
 1
 1
05/09/2010 03:24
peekaboo 
05/09/2010 03:24
peekaboo 

Ledderhose its a naughty disease

I have had this disease since February of 2009, probably sooner but that is when I found the funny little lump on the arch of my left foot. I opted for surgery in September unfortunately. I just couldnt take the pain anymore. I worked on my feet 6-7 days a week 12-14 hours a day I needed relief. Here is what I got. Surgery went well. The only pain was from the surgery. But then I have been wrong before.... It grew back in a different spot, I guess it was mad that the doctor and I evicted it from its home lol !
So then as I was healing I noticed several little lumps trying to stake claim to the arch on my right foot. I tried all the conventional methods and even vitamin e oil and peanut oil and different diets and stretching movements to no avail. So here is my update....
I have not worked since August 30 of 2009. Thank Goodness I have disability insurance. I am now trying pain patches 12 on 12 off to soon to tell if they really are working or I just think they are because I want them to. Either way it doesnt take away all the pain. But makes it numb. My regular doctor not my foot doc put me on a pill that helps with my foot getting ice cold or hotter that hades. My regular doctor also got me a handicap thing for my car so if I go to the store I dont walk forever getting in there and then walk a bunch to grocery shop. I try to do things in stages. Laundry to dishes as to not get to the point of pain. Because all of you know once you reach that threshold its a long journey back from the pain to normalcy. I have limitations and I was stubborn in the beginning but now I am slowly regaining life again. One day One step One chore at a time, Im not in a hurry and even though I still have pain (which I wish someone would tell me why the doctors wont give us pain pills to relieve our pain that only we know how bad it is) I do things slow and precise so I can have good days in a row. I also have figured out that extreme tempuratures make the nodules naughty and unhappy !! So I try to keep the house at a nice 69 degrees. Thought I would share some of my Ledderhose experience. Please feel free to correspond with me.

05/09/2010 07:19
wach 

Administrator

05/09/2010 07:19
wach 

Administrator

Re: Ledderhose its a naughty disease

Hi peekabo,

I had a similar experience after my Dupuytren's surgery. I had only a single cord and bent finger and that was what was operated on. Within a month or so after surgery I developed six new, quickly growing nodules in other areas, three of them even in the other hand. Although this not discussed in the literature I believe that the healing process can trigger growth of new nodules, possibly on previously dormant sites. I don't know whether this is true for each any everyone but at least it is true for me and for you. Years later I had to have thyroid surgery and again noticed that a somewhat accelrated growth of my existing nodules and cords afterwards.

In your case you might consider radiotherapy as alternative, provided your insurance will cover the treatment. Several people on this forum reported good results and on the Miami conference on 22/23 May there will be a paper on long-term results of phase 2 trial of RT of Ledderhose http://dupuytrensymposium.com/Abstracts/Seegenschmeidt_2.pdf.

Wolfgang

05/09/2010 07:57
peekaboo 
05/09/2010 07:57
peekaboo 

Re: Ledderhose its a naughty disease

I am just trying to keep as active and as pain free as I can. I am scared to do much else to the left foot as it hasnt healed properly after surgery and has regrowth in the arch as well. My Doctor is very skeptical about RT . And my insurance wont cover it. So for now I just try to keep comfortable till there is a real cure. And there have been people on here reporting things that they have tried seemed like it worked only for the nodules to grow elsewhere or more in the same area. This is a very unknown and weird disease, I wish they knew more on why and how. Like I dont drink or smoke never have and I dont take medication for anything till now anyway. I am a female and I am 44 years of age. If you read the statistics I dont fit the why and who and hows. Oh and none of my relatives have it or had this or know of other members that have either. Just trying to help others as well. Would like to know though why some days even doing nothing can make the nodules angry?? Or is it just something that goes with this unknown and uncommon disease. I tell people what I have and they look at me like Im out of my mind. I am in my area at least trying to raise awareness of this terrible naughty Nodule Nightmare. I guess baby steps till they find a permanent cure not a temporary fix !!! Thanks for reading and responding.

05/09/2010 10:35
wach 

Administrator

05/09/2010 10:35
wach 

Administrator

Re: Ledderhose its a naughty disease

Our page http://www.dupuytren-online.info/ledderhose_therapies.html gives an overview of current treatment options. Injection of cortizone is a possibility for painful nodules. They get softer and less apinful but the effect is not for ever and frequent injection of cortizone has side effects.

Wolfgang

05/10/2010 00:27
flojo 
05/10/2010 00:27
flojo 
Re: Ledderhose its a naughty disease

Thanks! Since I have DD in my hands, your posts have given me a heads up to check my feet for possible Ledderhose\'s, just in case. It just makes sense to check before any painful symptoms show up. I certainly don\'t want it, but it won\'t hurt to keep a check on my feet. I\'m trying to be as much ahead of this/these diseases as I can.

05/10/2010 05:20
LubaM. 
05/10/2010 05:20
LubaM. 
Re: Ledderhose its a naughty disease

Peekaboo,

Quote:
I am just trying to keep as active and as pain free as I can. I am scared to do much else to the left foot as it hasnt healed properly after surgery and has regrowth in the arch as well. My Doctor is very skeptical about RT . And my insurance wont cover it.

The surgeon I consulted for my DD almost had a fit when I mentioned RT for my DD and Ledderhose. I am so grateful to this forum, without it I would have never gone ahead with RT. The result has been very promising so far. The nodules in my hand got smaller and softer and the itching and burning has stopped. The two large, hard nodules in my foot are almost gone, what\'s left of them is very soft.

Is there anyway you can appeal the decision of your insurance and have them cover the RT?

 1
 1
experience   Seegenschmeidt   limitations   insurance   radiotherapy   possibility   responding   disease   conventional   dupuytren-online   comfortable   naughty   different   Ledderhose   unfortunately   tempuratures   alternative   nodules   surgery   dupuytrensymposium