| Lost password
305 users onlineYou are not loggend in.  Login
Ledderhose Update
 1 2
 1 2
01/17/2013 15:30
flojo 
01/17/2013 15:30
flojo 
Re: Ledderhose Update

Christi,
I am an expert only in my own disease as we all are because there is no other with our exact condition and symptoms. We know our own hands and feet but often don't even know how to describe what is going on, even less exactly what to do about it.

Research options, others' experiences, and information about resources for treatment available on this site is invaluable!

It helps so much to have caring people here who understand the weirdness of our disease!

01/17/2013 15:54
AmyD 
01/17/2013 15:54
AmyD 
Re: Ledderhose Update

Hi Seph,

Does she do NA on feet? I am not having a contracture problem as much as a pain problem from the lumps. I thought generally NA was not done on feet. But any time in Paris sounds wonderful and it does make more sense to just travel and pay if prices here are so inflated that it cost more even with insurance covering part of it.

I did not mean to start a political discussion on the board, I just was surprised that the doctor started off on a political discussion when I had already been waiting for 45 minutes and came in with private insurance and then acted like he was not going to give me the referral because of his personal knowledge of a 66% track rate.

I do not want to tie up the board with political discussions because I know that I and others are coming here for help and answers. But I am totally open to having you send me a personal message with what you think the answers are. I may or may not reply but I would love to hear your insights.

01/17/2013 16:18
spanishbuddha 

Administrator

01/17/2013 16:18
spanishbuddha 

Administrator

Re: Ledderhose Update

This thread has taken a confusing turn. NA is done on hands to cut cords and release contracture.

I have never heard of this on feet with LD. Maybe if you have cords and a contracture of toes or sole it is possible, but AFAIK it's unheard of.

Treatment options for LD on feet seem to be, first orthotics, possibly cortisone, RT, cryosurgery, and last surgery. There are some trials of ESWT or ultrasound. The US seems to have a few successful practices using cryosurgery. There are also reports of injections with Xiaflex, but again this is off label use of the enzyme with no verified eports of success.

Edited 01/17/13 18:20

01/17/2013 16:33
wach 

Administrator

01/17/2013 16:33
wach 

Administrator

Re: Ledderhose Update

NA is very rarely applied to Ledderhose http://www.dupuytren-online.info/ledderhose_therapies.html, it's a treatment for Dupuytren's.

Wolfgang

AmyD:
Hi Seph,

Does she do NA on feet? I am not having a contracture problem as much as a pain problem from the lumps. I thought generally NA was not done on feet. But any time in Paris sounds wonderful and it does make more sense to just travel and pay if prices here are so inflated that it cost more even with insurance covering part of it.

I did not mean to start a political discussion on the board, I just was surprised that the doctor started off on a political discussion when I had already been waiting for 45 minutes and came in with private insurance and then acted like he was not going to give me the referral because of his personal knowledge of a 66% track rate.

I do not want to tie up the board with political discussions because I know that I and others are coming here for help and answers. But I am totally open to having you send me a personal message with what you think the answers are. I may or may not reply but I would love to hear your insights.

01/17/2013 16:36
AmyD 
01/17/2013 16:36
AmyD 
Re: Ledderhose Update

Hi Yes Spanishbudda,

I am sorry I think my doctor's appt was frustrating and then when I posted I was still frustrated so my post with questions was confusing.

Got it. No NA on feet.

But I still would like to know is any Radiation Oncologist ok to try RT therapy or should I try to go to someone that has more experience with specifically Leddenhose. Since hearing that my nodules are significant I am worried I have already waited to long to try RT.

01/18/2013 04:51
Seph 
01/18/2013 04:51
Seph 

Re: Ledderhose Update

Wolfgang & Spanishbudda; It may have seemed that I was a little confused with my comment on LD and the use of NA but I was not.

I had two sessions with Dr Manet-Chopin just before Xmas. She was very clear in her explanation that she is a rheumatologist not a surgeon. She said that she works with surgeons on hand issues but thinks that surgeons should stay away from LD.

Dr Manet-Chopin explained that while LD and DD behave differently they are essentially the same disease with the same cell structure. She agrees that the best option with LD is not to interfere if that is possible. However she was also clear in saying that she does perform NA on LD when action is required. I understood her to say that they mix cortisone with the anesthetic while doing the NA procedure. The idea seemed to be to soften the growth with the NA and shrink it a bit with cortisone.

On this occasion Dr Manet-Chopin released the forefinger and index finger on my left hand (now perfectly straight) and the pinky and ring finger on my right hand (not such a good result but a significant improvement). The procedures were done 2 weeks apart.

In addition to cutting the cords and releasing the fingers Dr Manet-Chopin also performed NA on some tricky nodules. One near the joint of the thumb on my left hand and the other in the web between thumb and forefinger. For these procedures she performed NA on each and then injected cortisone. Doesn't make the nodules go away but softens them and shrinks them a bit. I am pleased with the result and will probably get it done again later this year when I am back in Europe.

01/18/2013 05:58
wach 

Administrator

01/18/2013 05:58
wach 

Administrator

Re: Ledderhose Update

Hi Seph,

injecting cortizone is certainly an option for DD and LD nodules http://www.dupuytren-online.info/dupuytren_steroids.html but that's not what is usually called NA. Dr. Manet-Chopin seems to to do both, depending on the specific situation, which very reasonable. If you have a big Ledderhose hodule I can't see what NA can help but injecting cortizone will make the nodule softer, reduce pain and alleviate walking.

Wolfgang
PS: Recently McMillan and Binhammer published on combining NA with cortizone injection http://www.jhandsurg.org/article/PIIS036...bstract?rss=yes

Seph:
... Dr Manet-Chopin explained that while LD and DD behave differently they are essentially the same disease with the same cell structure. She agrees that the best option with LD is not to interfere if that is possible. However she was also clear in saying that she does perform NA on LD when action is required. I understood her to say that they mix cortisone with the anesthetic while doing the NA procedure. The idea seemed to be to soften the growth with the NA and shrink it a bit with cortisone.

...
In addition to cutting the cords and releasing the fingers Dr Manet-Chopin also performed NA on some tricky nodules. One near the joint of the thumb on my left hand and the other in the web between thumb and forefinger. For these procedures she performed NA on each and then injected cortisone. Doesn't make the nodules go away but softens them and shrinks them a bit. I am pleased with the result and will probably get it done again later this year when I am back in Europe.


Edited 01/18/13 08:05

 1 2
 1 2
frustrating   discussion   because   cortisone   possible   unpredictable   Frustrated   rheumatologist   political   discussions   Spanishbudda   disease   Unfortunately   Practitioner   contracture   nodules   Ledderhose   Manet-Chopin   dupuytren-online   insurance