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My PF/Ledderhose Experience
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11/28/2007 04:46
Fatmanrunning

not registered

11/28/2007 04:46
Fatmanrunning

not registered

My PF/Ledderhose Experience

Interesting that I have just now found this forum. I am a 32 year old male. When I was approximately 10 years old, I noticed my first lump on the bottom of me left foot. At the time I "thought" it hurt. In actuality, I probably just wanted the attention afforded a surgical patient, so I had it removed. Needless to say it grew back, and a year later, I had it removed again. These first two procedures were done in my GP's office. The following year (maybe 2 years later, I know I wasn't in high school yet) I had my growth removed a third time. This time I was put under for the procedure and an orthopedic surgeon did the procedure. The healing time was much longer for this procedure.

I don't really recall when, but sometime in high school or college, I noticed my lump was returning. I didn't think much of it, but it soon became larger and larger. About 6 years ago it was large enough to get me concerned. I was referred to one of the best foot surgeons in the western US. Upon conferring with him, we decided to use orthotics to cushion the lump. I went in a year later for a follow-up, and the lump had grown even larger, and had spread into the ball of my foot. We decided surgery wasn't in my best interest at the time, because the pain was minimal.

Two years ago I began running. I ran for sixth months with minimal if any discomfort. I even completed my first marathon. In January of this year I was running my second marathon. About mile 24 or 25 I felt a terrible pain in the bottom of my foot, coming from my largest growth. I got through it, and continued to run and train for marathons. I would notice at times my foot hurt terribly, and sometimes it didn't. In June of 2007, I was running my third full marathon. At mile 2 I felt the sharp pain agian. Ut oh, there were 24 miles left to run, and the pain subsided (maybe the burning in my legs overruled the pain in my foot). Later that month I met with the foot surgeon again, and decided to have it removed a fourth time. I was suppossed to have that surgery tomorrow, but I cancelled it after I noticed that I have Dupuytren's Contracture's in my left hand. I suddenly became aware that my foot was more than a fibroma, and that these problems are related.

I also had a "cyst" removed from the knuckle of my index finger when I was 16. I have a similar growth on my other knuckle. Tonight I saw a picture of the "knuckle pads" and that's the same thing I have.

Not sure why I felt like sharing all of this, but I guess there is hope. I've ran 4 marathons, 5 half marathons, and run numerous miles a week with my Ledderhose Syndrome. I think I am going to just live with the pain and continue to put off surgery in hopes that they get the enzyme injections into Ledderhose trials.

Great site, and thanks for letting me share.

11/28/2007 08:51
newman 
11/28/2007 08:51
newman 

Re: My PF/Ledderhose Experience

Hi Australia Calling,
You should not overlook Radiotherapy.I am returning to Essen next week to have my second treatment under Prodf Seegenschmiedt. The germans are the world leaders in the treatment of benign tumours .The cost in the US is very costly. A member of the forum advised the cost of treating both hands and feet cost the Insurance $26,000 US. My cost for the complete treatment is 1600 Euros. Think about it .Regards from Down Under.

11/30/2007 23:15
jim_h 
11/30/2007 23:15
jim_h 
Re: My PF/Ledderhose Experience

Fatmanrunning, I think you're doing the right thing. I also have Dupuytren's, Lederhose and knuckle pads. While my Dupuytren's is serious and has required 2 surgeries, I have only a small lump in the arch of one foot. It showed up about 10 years ago (I'm 56).

I decided to keep on walking, running and cycling and to ignore the occasional twinge of pain. 10 years later, it hasn't gotten any worse. and I'm still running.



12/07/2007 14:40
lianapivirotto

not registered

12/07/2007 14:40
lianapivirotto

not registered

Re: My PF/Ledderhose Experience

Dear Sir, I also have both hands and feet and multiple surgeries, to no avail. However, my specialist at Georgetown, Wash. D.C. said that Vit. E helps in some positive way. So I have been taking 1000 IUs of Vit. E since I was in my twenties, I am now 56. I find that Vit. E keeps them soft and painless. This is not the case without the Vit. E. I tested this, smaller doses don't work either it has to be at least 1000 IUs. (I am female, so it is very unusual that I have DC so acutely, it is in my family.)

04/02/2008 17:05
Ian55 
04/02/2008 17:05
Ian55 
Re: My PF/Ledderhose Experience

Hi,
I just wanted to say that your not alone.I have had the knuckle lumps since my teens,a nodule on each arch since my twenties, one more each side since my forties and Dupuytrens for four years (just operated). I have always followed my Doctor brothers philosophy, if it ain't broke don't fix it ,so as I have had no pain in my feet
I did nothing about it so far.

04/03/2008 05:41
newman 
04/03/2008 05:41
newman 

Re: My PF/Ledderhose Experience

Hi Ian55 Australia Calling.
It is now six months since I had radiotherapy on both feet for Ledderhose. The cord in my right foot has basically gone. The lump(Nodule ) on my left arch which was the size of a large pea has reduced so that I have to really push into the arch to feel where It was . The cord has reduced and is very soft and the only way I can feel the remnant is by raising my big toe so that it stresses the arch .When my foot is normal I cannot detect the nodule nor the cord. I now regularly massage the feet with a enriched 10% Urea cream which helps retain moisture in the skin. If you are in Germany I would think about radiotherapy. Germany has been the world leader in the use of low dose radiotherapy for the treatment of benign disorders . I lived with the ledderhose for 8 years before I found the information on http://www.dupuytren-online.info Did you know that about 40% of patients with knuckle pads have Ledderhose. Just as you have described your advances of ML & MD. Regards

04/08/2008 14:48
IanMc55

not registered

04/08/2008 14:48
IanMc55

not registered

Re: My PF/Ledderhose Experience

Hi Newman,
Can I ask you what were the reasons you decided to pursue therapy for ledderhose, were you in pain or feeling discomfort ,if so how and where, or did you just want to get ahead of the game and stop it going further.
On my left foot one nodule is as big as a pea the second is twice as big and there is a hardening of the skin
behind my second smallest toe (not a corn) but no pain and no discomfort.

Having just been operated for Dup the last thing I want is the same again on my feet but the problem is if the nodules lie dormant for so long (30 years) and cause no discomfort does it make sense to start treating them.
The nearest radiation therapy address in the list is only 40 miles away so it would be a lot easier for me (than you) to get the treatment. I will ask for an appointment to see the foot specialist to get an opinion but as the practise specialise in hand and foot surgery I am not sure how unbiased they will be.
Thanks
Ian55

04/09/2008 00:40
newman 
04/09/2008 00:40
newman 

Re: My PF/Ledderhose Experience -IanMc 55

Hi Ian Australia Calling
Are you and Ian55 (registered) the same person? As I have previously posted ,I have had Ledderhose for the past 8 years and it progressed from a pea in the arch to a thick cord and a lump on the ball of the other foot. My Surgeon stated under no circumstances have an operation on the feet. Just ask any woman who has had to have a bunion removed. I have had numerous hand surgeries, the last in June 07. Within 4 weeks I developed lumps and a keloid on the operated hand and a nodule started forming on the other hand,(Index Finger)By' Luck 'i found the Dupuytren Society web and informed myself . I went to Germany and saw Prof. Seegenschmiedt ,who is a world leader in the use of low dose Radiotherapy ,for the treatment of non benign diseases. He sent me to se Dr Steffans a hand surgeon in a next suburb of Essen. The prof. treats patients in the early stages and he had never seen a patient with so much surgery. I also have 4 grafts. I could see numerous operation ahead and the time span between each getting quicker and quicker and the result getting poorer after each surgery. So I had RT on both hands and feet. I am very happy with the result. I will return in May to see the prof. One thing I now do is massage my feet with cream containing 10% Urea , which helps keep the skin soft. I do wear orthodics in my shoes as I have high arches which spreads the load. You need to check the the lump behind your toe is not a planter wart . I have two point pressure points under each big toe and any hardened skin is removed by those throw away files that the women use. When Buying shoes I look that there is a good soft innersole in the shoe which reduces the shock factor .Thats my experience . Regards.

Edited at 04/09/08 03:44

04/09/2008 06:28
Ian55 
04/09/2008 06:28
Ian55 
Re: My PF/Ledderhose Experience

Hi Wolfgang -New password allows me to log in.
Hi Newman,
Yes I was IanMc55 until I could get back in. Thanks for the history, I seem to be in a vaguely similar situation, 1 or 2 years behind you with no chords on my feet, but a relatively new nodule next to my thumb on the right hand which was just operated (under the little finger). If this nodule next to my thumb develops and I don't do anything, then like you I could be looking at more surgery.I have an appointment next Thursday again with the hand surgeon so I want to be ready and armed with the right questions and arguments on how to proceed.

01/26/2009 17:52
Marisyl 
01/26/2009 17:52
Marisyl 
Re: My PF/Ledderhose Experience

Hi Ian,
I see you traveled to Germany from Australia for your radiation treatment. I hope to find a radiologist in the US, but if not, can you please give some idea of how you went about contacting the German doctors? Did they speak English? Did you find a good place to stay? My Ledderhose is in early stages, so I want to zap it as soon as possible.
Thanks for any information.

Quote:



Hi Ian Australia Calling
Are you and Ian55 (registered) the same person? As I have previously posted ,I have had Ledderhose for the past 8 years and it progressed from a pea in the arch to a thick cord and a lump on the ball of the other foot. My Surgeon stated under no circumstances have an operation on the feet. Just ask any woman who has had to have a bunion removed. I have had numerous hand surgeries, the last in June 07. Within 4 weeks I developed lumps and a keloid on the operated hand and a nodule started forming on the other hand,(Index Finger)By' Luck 'i found the Dupuytren Society web and informed myself . I went to Germany and saw Prof. Seegenschmiedt ,who is a world leader in the use of low dose Radiotherapy ,for the treatment of non benign diseases. He sent me to se Dr Steffans a hand surgeon in a next suburb of Essen. The prof. treats patients in the early stages and he had never seen a patient with so much surgery. I also have 4 grafts. I could see numerous operation ahead and the time span between each getting quicker and quicker and the result getting poorer after each surgery. So I had RT on both hands and feet. I am very happy with the result. I will return in May to see the prof. One thing I now do is massage my feet with cream containing 10% Urea , which helps keep the skin soft. I do wear orthodics in my shoes as I have high arches which spreads the load. You need to check the the lump behind your toe is not a planter wart . I have two point pressure points under each big toe and any hardened skin is removed by those throw away files that the women use. When Buying shoes I look that there is a good soft innersole in the shoe which reduces the shock factor .Thats my experience . Regards.


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