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conflicting information
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05/18/2008 19:46
pixi 
05/18/2008 19:46
pixi 
conflicting information

During my ongoing research on DC and Ledderhose I ran across this page in which a doctor gives advice to a woman whose daughter has just been diagnosed:

http://www.drgreene.org/body.cfm?id=21&;action=detail&ref=649

Confined to a wheelchair for a lifetime? Radiotherapy "now been shown not to work"?

I noticed the page was written in 1997 but reviewed earlier this year. Just goes to show how misunderstood DC is out there and why we are so lucky to draw from the variety of experience on this forum. I sure hope the mother in question found it!

05/18/2008 20:26
TrevB 
05/18/2008 20:26
TrevB 

Re: conflicting information

That link just brings up a homepage and I'm not sure what I'm looking for?

05/18/2008 20:51
trictrac

not registered

05/18/2008 20:51
trictrac

not registered

Re: conflicting information

Try http://www.drgreene.org/body.cfm?id=21&;action=detail&ref=649 for the link.

05/18/2008 20:54
trictrac

not registered

05/18/2008 20:54
trictrac

not registered

Re: conflicting information

Somehow, the forum software is adding a semicolon to the url.


Take away the semi colon before "action"

05/18/2008 21:08
pixi 
05/18/2008 21:08
pixi 
Re: conflicting information

That's so odd but yes, remove the semicolon and you'll get the article in question.

05/18/2008 21:13
jim_h 
05/18/2008 21:13
jim_h 
Re: conflicting information

That article is way out of date.

Dupuytren's and Lederhose seem to occur very rarely in children. So rarely that I have to wonder if the diagnosis is correct. But even if it is, I think telling the parents that their daughter will end up in a wheelchair is unduly alarmist. No one knows the prognosis for a young child with Lederhose.

The real problem with lederhose is that it can be painful. If the lumps get large enough, they could certainly making walking difficult just by being in the way, but pain is the real problem - and the degree of pain depends on where the lumps are with respect to the nerves. And let's get real - people with major injuries to their feet still find a way to walk - no actuve young person is going to let Lederhose confine them to a wheelchair. She might need orthotics, or a more drastic surgery that removes the entire plantar fascia, but I seriously doubt she won't be walking.

It would be very interesting to hear the actual outcome of that case.

05/18/2008 21:32
Issleib 
05/18/2008 21:32
Issleib 
Re: conflicting information

Pixi,

I'm a physician myself. But not in this field. Like most of you I was told to wait for contracture and then have surgery. But I hit the medical lituature instead. I have access to subscription only search engines. Medical journals and textbooks that are much more accurate than sites like you can get to on google. When I read the medical literature I went to a friend who is a very respected radiation oncologist with a list of publications of his own. He confirmed the validity of radiation in early Dupuytren's. It got a bad name a long time ago because it does NOT reverse contratures. He gave me the name of another highly respected man close to my home and he knew exactly what I was talking about and agreed with the treatment too. I have had excellent results. The hand surgeon who made the diagnosis also insists Radiation doesn't work. But it was presented , by invitation at the American Society for Surgey of the Hand last fall. That's kind of Mecca for hand surgeons.

And only 85% (If I remember right) had not progressed at 5 years. That means some do progress sooner.

I couldn't make your link work but I don't think anyone in this forum is in a wheel chair.

Don't panic.

Colleen

05/18/2008 21:45
pixi 
05/18/2008 21:45
pixi 
Re: conflicting information

Thanks, Colleen. I was actually shocked by the advice given in the article since, thanks to this forum, I now know how inaccurate it is. I am currently looking into radiation myself after reading that you and others have had success.

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