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Is there any hope for Ledderhose?
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01/21/09 18:45
debrr 
01/21/09 18:45
debrr 
Re: Is there any hope for Ledderhose?

First of all, I would like to say I am thankful for this forum. Secondly, I am blessed that it appears that 2 very informed individuals are answering me! I so much appreciate the time they are taking. I want to tell you that I was so desperate, I was even thinking of having the pinkie amputated! And the feet, well, I was preparing to eventually become immobile. You have both raised my spirits....

jimh: Thanks so much for the link and the explanation for "off label"! I will check out cryosurgery as well, because I am become very concerned about my ability to keep walking. Will someone post on this forum when xiaflex is approved?

Wolfgang: Thanks for your links as well! I am so thankful you explained the splint....as I don't want to make anything worse! Actually, I have been wrapping snugly in Coban wrap. It doesn't completely immobilize, but keeps helps to keep it from bending too much. How do you handle handshakes? It seems everyone wants to shake ones hand and I find it very unwanted.

01/21/09 19:09
jimh 
01/21/09 19:09
jimh 
Re: Is there any hope for Ledderhose?

I've been following this and other forums for years and while many people have a lot of pain and discomfort from Ledderhose I have yet to read a post from someone completely immobilized by it. I don't doubt it could happen but most people seem to keep getting by with increasing sophisticated custom insoles, massage sandals etc. That, and possibly cryosurgery, is what I'd do if my Ledderhose became more of a problem.

There is a school of thought that says stay off your feet because it makes Ledderhose worse. Personally, I don't buy that theory. I was very impressed by a post from one guy who said his solution was simply to keep walking, running, and using his feet heavily until - as he put it - the disease simply lost its capacity to hurt him (or similar words). Maybe the nerves actually became desensitized, or maybe his brain adapted, but he felt he'd beaten it. Of course it all depends on how your individual nerves are affected.

I first noticed a significant lump in my arch at least 10 years ago. It has grown somewhat but causes me no difficulty as I've continued to walk and run extensively. From time to time I've gone through a period where it began hurt a bit, and that scared me, but I continued running and over days or weeks the pain went away. I'm not a doctor and this isn't a scientific experiment but I like to point out that one need not simply surrender to this condition.

01/22/09 15:18
wach 

Administrator

01/22/09 15:18
wach 

Administrator

Re: Is there any hope for Ledderhose?

The abstract of the Italian paper is not quite clear to me. But maybe you are right and eventually the fibroblasts and myofibroblasts get replaced by collagen, irrespective of whether a cord develops or not. I just don't know. Maybe we can settle on that it is unclear whether Xiaflex will work on Ledderhose or not. Maybe it does work and that would be great. In any case it seems to be an effective means to rupture cords.

Wolfgang

01/22/09 15:21
Wolfgang

not registered

01/22/09 15:21
Wolfgang

not registered

Re: Is there any hope for Ledderhose?

Very carefully ... sometimes I try to avoid them.

Quote:



... Wolfgang: ... How do you handle handshakes? It seems everyone wants to shake ones hand and I find it very unwanted.



01/22/09 18:56
debrr 
01/22/09 18:56
debrr 
Re: Is there any hope for Ledderhose?

jimh: Thanks for you advice! I wanted to let you know, that after a day of being on my feet a lot, I tried rolling a tennis ball for about 10 minutes over the arches. I was surprised to find it felt better! Even though I am taking NAC and verapamil, this is the first time I have felt any significant relief. I am going to continue doing this a couple times a day and see what happens.
So you don't have significant pain from your foot?

01/23/09 03:25
jimh 
01/23/09 03:25
jimh 
Re: Is there any hope for Ledderhose?

No pain at all at present. There were periods when it would hurt a bit when I ran - but after a couple of miles the pain would be gone.

Of course every case will be different, and who knows what the future holds in my case. But I've quit worrying about it.


I agree that whether Xiaflex will be effective for Ledderhose is an open question. So far it's been used to sever Dupuytren' cords by injecting a minimal amount, just enough to weaken the cord to the point that it can be snapped. A large Ledderhose lump is quite a different story. Maybe a series of injections over time could reduce and soften it to the point that it's not a problem.




03/21/11 20:24
jamesboris

not registered

03/21/11 20:24
jamesboris

not registered

Re: Is there any hope for Ledderhose?

My ledderhose cause a tear in my plantar fascia resulting in a year of healing

03/22/11 17:42
debrr 
03/22/11 17:42
debrr 
Re: Is there any hope for Ledderhose?

PLEASE tell us more about this!! How bad is your Ledderhose? How did you know it was torn?

@jamesboris:
My ledderhose cause a tear in my plantar fascia resulting in a year of healing

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presentations   development   Wolfgang   histologically   misunderstood   myofibroblasts   nodules   fibroblasts   proliferative   dupuytren-online   information   Xiaflex   Radiotherapy   sophisticated   Dupuytren   manifestation   collagenase   cryosurgery   Ledderhose   collagen