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?

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?

None

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.

Surgeon operating

Post Op stitches

Removed tissue

Removed tissue

Current state of foot

Dry foot after radiotherapy for Ledderhose

So I finished my treatment for Ledderhose disease just over 2 weeks ago now and one of the things that often happens with this treatment (and not just for those being treated on the foot but pretty much anywhere) is that the area treated starts to dry out. For this I was advised to get some E45 but after by first week of treatment I did not notice any signs of dryness however now after the second week there is a dry circle on my foot. Those who saw the pictures of my foot being tanned after radiotherapy will know that this is not something that photographs particularly well but I have tried. 

I think you can clearly see the outline of the dry skin? 

Radiotherapy in Surrey, UK - Day 1

Today was the day that I started my radiotherapy treatment for my Ledderhose. We stayed the night at the Travel-Lodge in Guildford and then headed off to Surrey Hospital this morning. We found our way to the cancer centre which is where I was having the treatment. On arrival I checked in and took a seat. 

Basically bang on time Dr Shaffer came out to meet me and I went into an examination room. He then remembered that my wife is doing a run and asked how things were going and asked me how my foot was and of course nothing had changed. He said how he didn't feel he was telling me anything new at my last appointment and so I explained about this blog and he said he might have a look.... so hello if you do. 

He then went on to make some marks on the bottom of my foot in permanent pen, first this was to outline the diseased tissue and then a second time further away to give a margin to make sure that also diseased tissue was hit with the radiation. He then said he would make it more artistic once I said I was going to take a picture and put it on the blog and I think you will agree he did a great job! 

Picture of my foot - inner ring is diseased area and outer ring is margin to ensure all bad tissue is targeted. This was basically all I saw of Dr Shaffer and that was all that was required. I was then taken into another room where a very helpful nurse talked me through what would happen and explained that it would be best to rub E45 on it as it is likely to get dry and E45 has no perfume or other rubbish and so they recommend it. 

She then asked if I have a family history and was surprised when I said no. She has been doing this procedure for 6 months, 2 to 3 Dupuytren's patients a week and all have had some sort of family history. I was also the first Ledderhose patient that she has treated. I then had a 40 minute wait in which we had breakfast at the hospital restaurant which was cheap and it tasted ok. 

I was then fitted with a lead plate. This is shown below, they matched the circle up to check that it was the same size as the margin and it was spot on so they filled that line in as shown in the second picture below. Then the machine was lined up to check it was an ok fit and some physicists were called because it is harder to get it snug against a foot compared to a hand and they wanted to check the dose would not be changed too much. The guys came and did their calculations and all was ok.  

I then had another 30 minute wait whilst the machine was set up and everything was sort. I went back into the room put my feet up, they put the lead plate on, lined the machine up and off it went. 

My foot resting and ready for radiotherapy

The radiation machine

The machine being lined up with my foot 

Zap, my foot being treated. 

Above are a couple of pictures of the machine and it in action on my foot. The process was, as expected, completely harmless, no pain, slight pressure because they have to ensure there is good contact between the machine and my foot to make sure I get the correct dose. The actual treatment part took all of 5 minutes and then I was booked in for the rest of the week. 

Now all I have to do is go back every day this week and that is it for another 8 weeks when I have to go back again. 

Overall the experience was very good. Dr Shaffer was very good and I am not just saying that because he might look on here. All of the other staff were very professional and everything went very smoothly and very quick and I couldn't have been happier about it.

Fingers crossed that it does something and I am off to get some E45 and I have to make sure I don't wash off the permanent pen so it can be used to line up the plate again for the rest of the week.