My Story Without Surgery To Stop Or Reverse Progression...I noticed Ledderhose nodules around 3 years ago on both arches of my feet. They were pea sized and painful...
After 2 years, they had progressed into marble sized and were very very painful. My left foot nodule is a little larger than the right. I showed my boss why I was complaining so much at work and he freaked me out by suggesting "it" was "waving" at him.
I then began to face the problem and do an immense amount of research.
Following my research, I immediately got a very good insurance policy and learned that surgery was out of the question as my first line of defense.
So... I stumped my family doctor (who had never seen it before) and the orthopedic surgeon had only seen it one time before and removed it.
DO NOT GO TO AN ORTHAPEDIC SURGEON! They will talk you into an operation and they know very little about this disease!
I decided against removal, due to the almost complete and abject lack of success it has.
Then I found out about radiotherapy. This is very similar to dealing with a "real" tumor rather than a benign one as Ledderhose is. It can be done with e-beam or x-ray machine treatment. The dose of radiation is high and with that comes a very, very small risk of cancer (no cases have been reported in dupuytrens or ledderhose). And from what I can gather it is less than one percent.
This treatment, is the only proven (researched) non-invasive way to deal with this nightmare and done all the time in Germany, the mecca of research for Ledderhose. Apparently, the nodules have (almost), no chance of coming back in the treated area.
At the point of learning about this therapy I started saving money and remained calm. I cannot emphasize this enough, just calm down and save, save and save.
The flight (from NC to Germany) and stay for a week is costing me 2,000 dollars and surgery is 500 euros per foot. My "super" insurance does not cover this and if I were to pay out of pocket it would be astronomical! Upwards of 15 to 20 thousand dollars!
That surgery would be in the US and is with no expertise or decades of results.
My procedure will be done in mid April 2013 and then again in 12 weeks.
The whole process is well documented on the Dupuytrens society website. Look up the radiotherapy personal stories.
I will keep you up to date with the results.
Good luck to all!
Garrett5302 31-35, M 1 Response 0 Feb 24, 2013