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Lederhosen Story

I am a 60 year old female with Lederhosen syndrome of both feet. I have been able to deal with the condition but lately, after wearing dress shoes with a heel I am experiencing severe cramping of my arches. Does anyone else have this? Is it related to Lederhosen or could I also have another condition. I saw a foot specialist who advised no massage in the arch area because he said it would stimulate the condition. I feel like massage helps, myself. Any experience with massage helping or hurting?
Sorefeet1950 Sorefeet1950 56-60 14 Responses Feb 7, 2011

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I have it also and since I was 15 and it took years for anyone to tell what it was!! I am 54 years old and a female. I just had to retire from my job as a fitness instructor because of my Ledderhose Disease and Dupuytrens Contractual. My calves burn and ache. I too feel that massaging them for the moment does relieve them for awhile. I have had 3 surgeries, 2 on my right hand and 1 on my left and 15 needle procedures to release the bands. I feel they don't know enough about these diseases because I have been to many doctors and back in the day didn't know what I had.....I wish you well with lots of understanding how you feel. Good Luck! :)

The first appearance of this disease was (now that I think back of it) on the top side of my hand (when I was about 18 years old). A small bump had appeared on one of the tendons, it moved along as I moved my fingers but disappeared after a few months. The second time I discovered it (when I was about 22), it was present beneath my foot, that was about two years ago (slightly longer, but I remember it because I was operated around my birthday). It started with a small bump, which the doctors diagnosed as plantar fibromatosis (the Lederhosen disease) and they suggested surgery as the solution. I was lucky not to have it on both feet, just beneath the left one, about 2 cm in length.

The first surgery was done in the Netherlands, by a regular surgeon and was no success. They removed the tissue, but after surgery, the initial swelling turned into scar tissue, leaving me with quite a large lump beneath the foot. This did, however, not grow any further and they advised not to operate on it anymore unless I was in great discomfort.

Half a year ago I discovered that the scar tissue that remained after previous surgery started to 'branch out'. Along the line of the initial plantar fibromatosis, new scartissue was forming. Next to that, I could feel the dull, throbbing pain coming back to my foot, especially after days of much physical activity. Again I went to the hospital (this time in Denmark, since I have come to work here), however, this time I chose to go to the Plastic Surgeon instead of a regular one. I had the surgery two weeks ago, I think it has been a success. Today I've received a phonecall that the tissue was indeed what they expected, plantar fibromatosis.

This time they have removed more tissue then the first surgery, along with the lump of scar tissue and time will tell if it was a success or not. I'm currently back at work, though I walk with crutches and have to evaluate if I need to another week of recovery with my foot up or not (I tend to be over enthusiastic regarding my abilities and capacity).

From the small bit of experience I have, and what I have heard about the disease and from several sources before, I recommend to have it treated by a plastic surgeon, rather then a 'regular' one (if such a thing exists). In my case I had the feeling, even though it was not their area of expertise (and consulted with an orthopedic expert), they did a good job. Pain I previously experienced has receded and I'm doing better already.

I have no experience whatsoever with massage or other means of treatment, I am however quite interested in hearing more about it. In my experience, massaging the spot directly proves to be too painful. It might help the foot itself and the area around the fibrom which also seemed to hurt at times.

Let's hope enough of the material has been removed and it won't come back, only time will tell.

My husband has the disease also in both feet. orthodics only helped for a short period. His disease progressed quickly and he has had two surgeries in both feet in a year. Massage helped a bit but there was no proof that it was causing it to stimulate the condition.
Hope yours has not accelerated.

I am a 53 year old woman with Ledderhose diease on both feet, notice the nodule at the age of 15, it is now covering both arches and on the sides of my feet, I also have dupuytren contracture and knuckle pads on my hands, also very bad, had one open hand surgery, it came back and I also have scar tissue, I have had the needle app. to releive my fingers from pulling down, this does help, the open hand surgery, do it at your last resort, I am a fitness instructor and personal trainer, it took me 9 months to get back to wear I was before surgery. I continue to teach and workout, I have problems with alot of things, can't do push-ups, my hands do not open up flat, I modify those, I can not go on my toes, it makes my calfs burn, not sure why they do that, must be those nodules, my Dr said I was doing the right thing by exercising. He said because I got it so young that I was probably going to have it as bad as I do!! I have trouble picking up a glass, I have to use two hands because I am afraid I will drop it. I do the best I can with what my condition is, and refuse to give into it!! I continue to have the needle app done on my hands,as it does help, but continues to get worse. I wish everyone good luck, keep pushing yourself, hopefully they will find something to help this diease!! ;)

I am recovering from surgery to remove a 3cm plantar fibromatosis (ledderhose disease) on my right foot I am about to start the 3rd week of not placing any weight on my foot and am expected to start slowing using my foot again in week 4. I have a smaller one on my other foot which I will be having removed in 3 or 4 months. I also have knuckle pads on both hands, which is soft tissue lumps on my knuckles as a secondary condition to the ledderhose. It is related to "Dupuytren" which effects the hands, my father had surgery for this, so it indicates that it can be genetic, particularly in light skin races.<br />
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The plastic surgeon who performed the operation had himself had something similar and seemed very knowledgeable on the subject. I ideally they prefer not to operate unless all other methods of treatment (injections, massage etc) fail to elevate the discomfort or they reach a certain size as scars on the bottom of the foot can cause their own problems. That said the mass is generally found in the arch of the foot and unlike the other areas which directly bare weight, it is a good place on the foot for surgery. The surgeon in my case made a s shaped incision to aid the flexibility of the scar to move with the shape and movement of my foot. I would strongly question any doctor who would recommend that both feet should be done at the same time, as your foot will be raw, swollen and bruised and you will be using crutches for several weeks for mobility. With recurrence, the statistics show that the younger you have surgery the quicker it is likely to grow back, where as say from 40yr upwards it is far far slower to grow back, with the statistics showing 15 - 20 years, though each case is different. The good news is that a new injection that liquify's the particular collagen type that causes the masses is on trail or about to go on trial in the USA which if proves positive will eliminate the need for surgery at all. fortunately I have no more info on this but will post here if I can find out more.<br />
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There are numerous video's on youtube under plantar fibromatosis, or plantar fibroma including several actual videos of the surgery.<br />
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I am happy to answer any questions on my experience,

Please keep all of us posted on the release of the new injection. That sounds like the most promising thing happening in the near future. I've waited on having the surgery for so long. Would love having this condition greatly improved as would all of the others who responded. Thanks!

I have Dupuytren's disease and I thought I had the needle app, until my tendon ruptured and I found out that I was given the new injection to so call liquify the mass. Don't do it, I lost the use of my middle finger totally. Then I got the Dupuytre's in my left hand, went to a new doctor who did the needle app but the growth was back in just a few months. Now he tells that I'm a good candidate for the open hand surgery; which I will probably do later this year. I'm lucky the mass has not come back in my right hand since I lost the use of my finger. I have the plantar fibromatosis on my left foot and had surgery to remove that some years ago; now that is back and there two more tumors growing on my foot making it 3 that I have on my left foot. I'm blessed that there is no pain in my foot to date. This is genetic my doctor told me, my father had the problems.

Thanks for all the stories! They really help me and I appreciate the time you spend telling me about your experiences with this awful disease. Medical science seems to be lacking in answers for us so it's important that we help each other. Thanks again!

I suffered first from Dupuytren's contracture in my left hand. My first operation 16 years ago accelerated the problem and I returned for a further operation 2 years later. The second surgeon agreed to a more drastic surgery cutting away more of the fibre mass and scouring the tendons beyond the fibre growth. I have had no recurrence since of Dupuytren's.<br />
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However two years later I developed Ledderhosen's syndrome in both feet. The onset was quite fast and made walking painfull and ruled out all sports activities.<br />
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At this time I moved to China and having been advised by my surgeon that surgery was necessary and that I should do both feet at the same time as I would be incapacitated anyway, I was faced with a hard decision. Given the incidence of rapid recurrence after surgery and the time I would have to spend away from my job I decided to forego surgery and soldier on.<br />
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I then visited a doctor at my local hospital in Panyu, Southern China. No Chinese doctor has ever seen, or heard of Ledderhosen's but it seemed I had nothing to lose.<br />
He advised various herbs in a foul concoction (all Chinese doctors do). A course of aggressive foot massage every day for one month and daily accupuncture using needles heated with smouldering bundles of herbs attached to them.<br />
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I repeated the course for a further month and the nodules had completely disappeared on both feet. I had no idea why - could be one of the treatments, could be a change of diet (my overall health improved greatly on a diet of freshly cooked Chinese food, no bread, no dairy products, no additives)<br />
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10 years later and living now in Thailand, Ledderhosen's has made a re-appearance in my left foot. Accupuncture is not available, nor Chinese herbs and my diet here is good so I will embark on a course of aggressive foot massage daily for a month and see what happens.<br />
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I will update this post next month and let you know my progress.<br />
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P.S. It really hurts when they push the sticks they use for foot massage into the tendon , but at least I console myself that I am getting my own back on this irritating disease<br />
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Paul in Ao Nam Mao - Krabi, Thailand

Love your story and thank you for sharing. I need help!!!! I work on my feet and they are my money makers. I have ledderhose on my feet. I would like any/all info about your herbs/acupuncture that helped you recover. No way I'm going under the knife. I'm only forty and trying to get married. Can't if I can't work. please help!

I have ledderhose disease, I have had physio, steroid injections, pain killers and I am trying to use orthotics to counteract the pain. Nothing is really helping so far, my pain just gets worse and worse as the day goes on to the point where after about 3pm I am starting to need to use a walking stick to take some of the pressure off. I am a research scientist so I have taken to trying to understand as much as I can in the literature about both Ledderhose and Dupuytren's. I am very much against surgery as I have heard so many bad stories and my specialist says he will only use it as an option when I can no longer walk. If anyone wants to know more about what I have found out or wants to talk about this disease then please message me.

I have been dealing with Ledderhosen for about 2 yrs now. I have several other health probs, I was discovered to have extremely aggressive Scoliosis at 10. My first spinal surgery was at the end of that same school year. For approximately 18 to 20 yrs I was dealing well super involved in sports ,community, you name it. In late October of 2008 after 2 years of terrible pain and manyhospitalizations. The spinal surgeon in our hospital noticed an odd mass on my dye test. Turns out the hardware installed when I was a child that was never supposed to move had, in fact moved and compressed many of the nerves related to my legs feet and abdomin, after the 3 rd surgery I began to notice pain in the boottom of my feet. It has since November of 2010, gotten constantly worse. I never cried through the pain of all the orthopedic surgeries I have had. However, by the time I complete a grocery trip I am in tears. With all the surgeries I have been prescribed most any heavy pain med you could imagine but NOTHING alleviates this foot pain. I have tried topical analgesic creams,patches,orthotics,heat,frozen water bottles, infrared massage by chiropractic; the list goes on and on. Yesterday 4-3-12, I had an appt. with my Rheumatoligist, I also have Lupos as well as 3 other mild autoimmune syndromes that tend to travel with Lupos. He is a very thorough dr and as we were discussing my progress ; I mention what I thought was Plantar Facitous was becoming worse by the month. He then checked my feet and told me he was quite certain I had Ledderhosen , he counted 13 significant nodes on my left foot and 9 on my right. One of the largest on my right foot frequently becomes extra swollen if I have been on my feet for a entire day it looks inflamed red and is the size of a small grape. Once I soke in extremely hot water and stay of my feet for around 36 hrs the really large knots go back to their "normal" angry size. I still a little shocked by my new info. My Dr also found the first to show up on my hand also. It started about a small callous around3-4 wks ago and has tripled in size already. I saw you post while trying to understand, what this disease is and how bad it may get. I seem to be in a sub group rarely diagnosed with the severity my type of (Viking) disease. I am 37 so even though some individual develop this in childhood it is still much more common in males in mid to late 50's. I found an article from Duke school of med. that also said it was even more rare to have this in the feet bilaterally,and in the hands also. After 24 months of ortho surgeries and phys. Therapy and then the Lupos. I am very afraid I going to end up not able to walk from some disease I had never heard of until 2pm yesterday. I too have days that I have to use my cane by the end of the day. I would very much appreciate your knowledge sharing, as I mentioned earlier I kind find a lot of comprehensive info. I know I felt bait less alone after finding these several posts of others experiences. Thank you for having gone to the trouble of sharing. I apologize for my rambling first couple of paragraphs, and also for this very long post, but after my wheels spinning all afternoon, I had too vent some of this info out!
Thank You, Stacie Mitchell in Alabama

i have only on one foot i have had it since i was 7 i am now 11 i have had one opp and im going for another one in 7 days . mine is 3 and a half by 4 and a half cm it is big cuz i get it from my mom and dad so i recomend a plastic surgion to cut it out i use chris van der wolt

I have had surgery also to remove fibromatosise , fribrima on planterfascitis tendon. It grew back in less than a year and now is aprox. 4 X as large and more painful then ever. I am looking into a surgery to remove the entire tendon. I am scared but I just can not take the pain. It is a 9 on a 1-10 scale, and thats laying down. Walking has cause problems with spine because of the walking on the side of my foot so on and so on. It never stops. I have been in such pain the thought of chopping my foot off actually came to mind. I have had 6 orthotics now and they do not help. Anyone who has had the tendon removed please contact me or post about the outcome. I am desperate. To dsaein06 my heart goes out to you. I have been on class 2 meds for years and it does nothing for the stabbing constant pain of this disease. Good luck and God Bless

I have had a total of 4 foor surgeries on my left foot. I believe I am heading for surgery number 5 and most likely will not have it. I have had orthopedic insoles, worn orthopedic shoes including Earth shoes. Nothing has helped and I am totally frustrated with this condition. The pain at times is unbearable but I have decided to accept the daily pain and go on with my life - as it is. Surgery often helps. Speak with your doctor. My doctor was very honest before the first surgery he said the chances of retuen tumors is about 75%.

I am a 62 year old female that has been diagnosed with fibromatosis. I have a lump in my right arch. I saw a foot specialist that recommended to have surgery to relieve the pain, I am scared to have surg.ery and have complications of the surgery. I am also a 12 year cancer survivor I had chondrosarcoma of the right femur. I would like to know more about anyones surgery results so I can make an informed decision.

Try VERAPAMIL - see the 1st post "I have Ledderhose Disease" re others using it.

I,m a 51yr old female and had both of my feet operated on when I was very young last time at age 15 have not had them in my feet sence then .Yes .my feet still cramp to this day ,and yes I massage my feet,.my father and aunt are the only with itne to have that i know of .I now have them in my hands,after a while you just learn to live with it.....carol

The massage helps me. I hate this disease!