My experience with Ledderhose disease aka plantar fibromatosis. This information is not intended to replace your doctor. Information on this blog is provided for informational purposes only. You should not use the information on this web site for diagnosing or treating.
Interview with surgery plantar fibroma patient in the USA
Today I have an interview with a Ledderhose patients from Florida who has had surgery for this condition and had it come back, read below for details on this individual, their experience and what they plan to do now. Plus photos, warning these pictures are of surgery and so many of them are not pleasant so they are all at the end.
1) Do you have Ledderhose disease, Dupuytren’s disease or both?
Dup. Disease: Although I have had painful finger tightening (similar to a cramp, it draws my left ring finger toward my palm) I have not been diagnosed with Dupuyten's disease.
Ledderhose Disease: My Dr. Just referred to it as a plantar fibroma..
2) Do you have a family history of the disease or have any increased risk from other risk factors such as excessive alcohol consumption, smoking, diabetes etc.?
No family history. I do smoke, drink, and have Type II diabetes.
3) How long had you had Ledderhose before considering surgery? And what other treatments had you received / were you offered by medical professionals?
I had the the lumps for about 5 years prior to surgery. They started small and were only a minor discomfort at first. (I have a good tolerance for pain.)
4) Before surgery were you made aware of the rate of reappearance and did this concern you?
Yes they told me that it had a potential to return. It was not mentioned the actual % rate of reaturn.
5) Were you at the stage where you couldn't walk before you had surgery / what sort of pain were you in?
I was at the stage I could no longer make myself suffer thru the pain. I did not want to do anything that required being on my feet. I was noticing that I was getting "lazy". I also noticed how many of my shoes were wearing out only on the outside edges.
6) What kind of surgery did you have? Did you just have the lump removed or the entire fascia?
I really am unsure, I did watch the removal, but it all just looked like a lump or mass of tissue. I am embarrassed some about this, since I generally try to get a good grasp of the situation.
7) How did surgery go? How long did the surgery take and what was recovery time like?
I think it went well. The freezing liquid used to numb my foot prior to the "local" injection to the bottom of my foot was the worst pain I have ever felt. Surgery took about an hour total. 3 days no pressure on foot, 1 week almost no pressure on foot, then slowly returning as I felt able. Crutches 2-3 weeks.
8) How long ago was the surgery? Have the lumps grown back? If yes how long did they take to grow back and are they worse now?
2 years (both feet) and 4 years (right foot only) Lumps have come back in both, but the left foot has had larger more painful lumps return.
9) Would you say that the surgery was worth it? And would you recommend it to people that have Ledderhose? Would you consider having it again?
I have seriously been thinking about having surgery again. But it is also very painful and not very promising as a long term remedy. I would not recommend or deter anyone from surgery. It is something one must decide for themselves.
10) What would you say your standard of walking is at the current time and do you think this would be different had you chosen not to have surgery?
After sugrery it was better, for a about a year. Now I am getting back to the point where I was before I decide to have surgery. I can only walk short, limited amounts before the pain and soreness causes me to need to take all pressure off.
11) What treatments have you tried since surgery?
12) What treatment options are you considering now?
Thinking about getting surgery followed by radiotherapy, in hopes that the latter will give me a better chance to prevent the return of the lumps. Right now I am trying to locate Dr's experienced with both treatments.