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Treatment Options Besides Surgery

ThePhoenixLives Message
18 Aug 2009, 10:14 PM

I'd like to know the treatment options considered by the members here. Please share what you're doing, other than surgery. Below is my own history with the disease. I'm a 46 year old woman with Ledderhose, diagnosed when 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).
Lumpyfeet Message
21 May 2010, 09:32 PM

Like you, I consider myself well informed in Plantar Fibromatosis. If you think you are disappointed, you should come to Canada, where they still do not have Cryo for Podiatric surgeries. I have a theory similar to you, that this is auto immune related. I think that the nodules are actually stimulated by exercise. They are hyper tissue growth, like a benign cancer. Its the body's hyper response perhaps to injury. When mine started, I was just starting my nursing career and on my feet for 12 hours a day. I walked everywhere. Now, after 16 years, 2 complete resections both feet, and now cryo, I am lucky I am still walking on my own steam. So far, my faith is in the cryo, because as far as I know Xiaflex is not for Plantar Fibromas. I had cryo about 12 weeks ago, and it got me back walking and on less pain meds. Yes, grafting is known to discourage tumor regrowth, but the extensive recovery is not an option, as I have equal problems in both feet. I am glad that you are finding some options. I do not know if you are also part of the Plantar Fibromatosis web group on Yahoo, but there are more members and lots of info. Good Luck! Susan