Hi.

What kind of treatment did you get in Germany?
Right now Im trying to find a MD in Sweden that can help me, and i have to know what to tell him/her.

My foot is so bad now that I can not run anymore, and for a month I have had pain in my legs and back. I cant stand living like this. It´s nice that there is people that can walk and run without pain, inspite of the LD, but I cant. So please, give me some suggestions on what to do.

/Kajsa, Sewden

PS. Im interesed to see how other LD-foots looks. I think It would be god for us and our MD´s if we started some kind of Gallery of LD- pictures dont you think so?

Jurate, your experience in not finding acceptance of radiation, or really understanding of LD by US doctors, is why I went to Germany for treatment. I'm sorry you are unable to do so.
Our so-called "health care" system is so unbelievably screwed up. You just have to see how they do things in Europe to understand how bad it is here. How on earth did we allow health care to be a for profit industry? That's why there is no knowledge of proper treatment for LD--It's a rare condition, and there is no money available for research, unlike Germany.
Another interesting story, I think, is that I asked my doctor in Germany to look at a swelling on the top of my foot. He immediately called another doctor, the head of orthopedics in a hospital in a nearby town, who agreed to see me right away. Dr. Seegenschmiedt, my radiation MD in Essen, arranged for his driver to take me there. I had an X ray, and was seen shortly after by the doctor, who showed me the results, discussed it with me in excellent English, one adult to another, and explained it was nothing to worry about, just the result of arthritis. I asked what I owed for this, and it was 90 Euros, which included the X ray.
Can you imagine this scenario here?
All I can say to you and anyone else in the US with LD is to not ever have surgery. You can see in the horrible stories of those who have been crippled, who are so much worse off than if they'd done nothing at all.

Hi--I'm a 46 year old woman in Washington state (USA) with Ledderhose since I was 29 yrs old. My father has Dupuytren's. I am currently hobbling around on crutches as I had 3 tumors removed from my right foot two weeks ago; the size of tissue removed was about 2 1/2 to 3 inches long by 1 inch wide. This time (this is my third surgery with large Ledderhose tumors), I am being treated by a talented young Podiatrist/surgeon who used human tissue (grown in the lab) to replace the space of the tumors. This doctor has had very good success in zero repetition of the tumors after using the foreign skin (of course he also is taking a clean margin around the tumors as well, a well known technique to prevent reaccurance).

I will say that I consider myself a near-expert in Ledderhose, since I have needed 3 surgeries in the past 17 years to live a semi-normal life. I have had Hashimoto's disease (thyroid-auto-immune) since I was 19 years old, but it was not treated until I was 38 years old, when I finally got very very sick. I also have the auto-immune variety of Arthritis. My endocrynologist (an extremely talented woman) knows nothing of Ledderhose. I WISHED that there was one doctor who could treat all of this auto-immune stuff (including Ledderhose, which I believe is auto-immune), but I have not found a doctor who could do this. So...the Podiatrist for Ledderhose, the Endocrynologist for the Hashimoto's, and the Rhumatologist for the arthritis. What no one has ever told me (because no one knows) is WHY. I will say that I am quite dissappointed that in the USA, the NIH (the National Institute of Health--the government agency for medical research) has put exactly ZERO dollars towards research of Ledderhose.

Other tumors:
I should note that I currently have fibroid tumors in my uterous and one of my lungs, and no doctor can tell me why. I do have an appt with a lung doc in Sep 09 to pursue diagnosis.

Background:

My first tumor was very large (left foot), and at the time I was an extremely fit 29 year old woman, a vegetarian (I do not believe that diet plays any part in Ledderhose) running 6 miles a day 6 days a week. The tumor went from a pea size to 2 inches in one month (left foot); surgery was the only option. The doc took a clean margin of tissue around the tumor. Tumor never reacurred in this foot.

My second tumor was in 2004 (right foot), it was about 1/2 inch in diameter on the right foot. The doctor never took a clean margin around the tumor. Tumor reacurred in 2008, in multiples in right foot.

Aug 2009 are latest tumors (3 of them) in the right foot (explained above).

HI
I´ve seen alot of pictures of LD-feet, but There are no story behind those. It would be more meaningful to se apicture of afoot, if there was bakground to it.

anyway..

About surgery.

I can understand the thinking bihind 20 surgeries. I been thinking of having one again ( It will be my second).
If surgery makes it posible to run 10 months of the year. I´m not afraid to have one each year. The only thing I´m sure of right now is that I can´t live like this.

I hope i find some treatment soon.

/Kajsa, Sweden

Jurate, wouldn't you be afraid of getting used to pain killers and, while pain is reduced, you might do other, worse damage to your body by taking pain killers permanently? BTW, Paul reports about pain medication for Ledderhose on our "personal experiences" web page http://www.dupuytren-online.info/Paul_story.htm

Wolfgang

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Helmet, have you tried NSAIDs (non-steroidal anti-inflammatory drugs) for the pain? I have been going through the medical literature on Ledderhose and find remarkably few publications, so I have been reading about other types of fibromas which may be similar in some ways. There are a few reports that NSAIDs such as aspirin and ibuprofen can actually shrink fibromas in some cases because growth of the fibroma is promoted by the same prostaglandins that are inhibited by NSAIDs. So I gave it a try. Why not, they're pretty safe drugs and even if they don't actually shrink the nodules they might make the aching go away. And indeed the aching did go away, though I don't notice the nodules shrinking. Of course I've only been doing this for a week, but I'm going to keep it up because I feel so much better.

I started with extra strength aspirin (Bufferin) and took 2 of those 3 times a day. The aching went away and I felt great. Now I have switched to Celebrex (trade name for celecoxib), which is a newer drug that is supposed to be much more specific for inhibiting prostaglandin synthesis (it requires a prescription). When I went off the aspirin the aching came back, but when I started taking Celebrex it went away again. I'm taking 2 200 mg Celebrex pills a day. The aspirin was just as effective.

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