Interview with Ledderhose surgery patient with family history of Ledderhose

So today I have another interview with a person who has had surgery for their Ledderhose, not only that but this person also had a family history of this disease, this makes research very important to them as they do not want their 2 daughters to get the disease. Look below to see her answers to some of my questions as well as a family tree showing the disease. Thank you Ohmyfeet from the plantar fibroma support forum.

1) How have you had Ledderhose and long had you had Ledderhose before considering surgery? and what other treatments had you received? Did any of these treatments work at all?

I have had the lumps for several years without pain. But have been having trouble with them for more than a year. I had previously had injections in several nodules, which was more painful than surgery!! My Dr did not numb it first but used both in the same syringe. Now I am not a wieney when it comes to pain, I had two children without any pain meds, I broke my foot on my way to have a stress test and went ahead and ran on the treadmill and passed with flying colours, only to hobble down to the ER after X rays the Ortho Dr came in and said you are tough!! I spent the next 6 weeks in a cast.

2) 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 point that sleep was interrupted and I work in a factory and stood all day (recently my Dr. had written a note and was able to sit as needed).

3) What kind of surgery did you have? Did you just have the lump removed or the entire fascia?

 My surgery was a cross between the two, as there were several nodules and each required that the healthy tissue accompanying the nodule be removed, I had several nodules, one of which was about the size of a walnut. Only the affected band of fascia was removed.

4) How did surgery go? How long did the surgery take and what was recovery time like / expected to be like and did / will you have to spend long on crutches?

My surgery took about 2 1/2 hours and I was told that the tissue they removed was about 5 x 3 x 1....I cannot image how much they would have had to take in order to remove all the bands of fascia. I had a nerve block at the knee which kept the foot numb for 2 full days, which was followed by a couple of days of pain meds (which I do not tolerate well). Crutches sucked so after two days I got a knee scooter which was wonderful. Everyone has their own pain tolerance and when you reach your breaking point you too will decide to have surgery, unless of course there are new treatments available.

5) How long ago was the surgery? How was recovery?

I had the surgery four weeks ago today and there is still some numbness in my foot. Each day I feel better. I have been somewhat mobile since the stitches were removed but incisions are hard and painful. I am scheduled to return to work in four weeks, I cannot imagine at this point standing all day. At four weeks post surgery after being out for an hour I must elevate and ice in order to assist in pain management.

6) 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?

At this time I don't know if I will have the other foot done.

7) Did you know about the chances of the disease returning after surgery?

Yes, I was very aware of the reoccurrence rate, but given the fact that my podiatrist had to remove so much tissue I (we) felt like with the removal of 90% of the medial band of fascia, that my chances were lower. Hopefully this calculation was correct

I also had one nodule that was in the distal band (which was directly below my fifth metatarsal) which was removed at the same time, although through a separate incision, this lump was not visible but could be palpated under the skin, this came back as not a fibroma but more in the category of a cyst.

I hope we can be of help to people who have this disease.

Interview with a Ledderhose surgery patient

Interview with a patient who has had surgery for Ledderhose:


So over the coming days I am hoping not only to make a post like my previous ones about orthotics and steroid injections but as I have not actually had surgery myself I am also going to review a few scientific journal papers on the subject and as I am today post an interview with someone who has undergone surgery. Of course if any one else wants to participate in this then just contact me but for now I have one person who has replied and here is what happened when I asked them the following questions:

Questions on Surgery: Answered by Becky from http://rareplantarfibromatosis.blogspot.com/

 1) How long had you had Ledderhose before considering surgery? and what other treatments had you received?

I first found the lump in February of 2009. The first treatments that I tried were orthotics and different types of inserts which I found myself. I worked on my feet 12-14 hours a day in metatarsal boots (safety boots). So I really needed relief quick as I was unable to work with the pain and nothing worked so I found a Podiatrist.

He felt my lump and we both knew what it was. I had only researched what the lump in my arch could be and the answer that I came across was plantar fibroma / Ledderhose and this is what the doctor diagnosed me with.

We waited a week and I called him begging for him to cut it out as I was in so much pain. I was then booked in for surgery 3 weeks later September 25th 2009 and this was my surgery day.

2) Before surgery were you made aware of the rate of reappearance and did this concern you? 

Yes I was aware that there is a high chance of reoccurrence (60% for lump only removal and 10% for whole fascia removal) but the pain was too great and I didn’t care at that time as I just wanted relief and hoped that the surgery would relieve for some time at least.  

3) Were you at the stage where you couldn't walk before you had surgery / what sort of pain were you in?

I was in a lot of pain to the level that no shoes allowed!! If I had to put it on a scale of 1-10 with 10 being the worst pain you can think of then I was at a 7 or 8.

4) What kind of surgery did you have? Did you just have the lump removed or the entire fascia?

He just removed the lump.

5) How did surgery go? How long did the surgery take and what was recovery time like and did you have to spend long on crutches?

Surgery was fine and I think it took like an hour or so. I was out completely during the operation but I awoke while they were still sewing me up I could hear just couldn’t speak or move and although I felt pressure there was no pain during. 

I feel like I am still recovering but I did manage to drive to the doctor the next day so he could check me and make sure that everything was ok. I spent about 3 weeks on crutches and he was trying to get me back to work at the 4-6 week mark.

5B) 3 weeks doesn’t seem like a long time to be on crutches after foot surgery, did you feel ready to walk after this time and how was walking? When did you / have you returned to work?

I do not feel 3 weeks was long enough but I do believe my problem/pain was from the regrowth. I still have problems walking and as a result I walk on the side of my feet to avoid any nodules contacting anything as this is so painful.

6) 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? 

The surgery was 2 and a half years ago and yes almost immediately the lump grew back right underneath the incision, by 2 months after the surgery the Doctor knew it was back. The pain and the lumps are worse since surgery.

7) 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 would say it is a treatment option and I would say that I would do it again if I was in immense pain and nothing else was working. With this disease anything we try is trial and error. It might work for someone else. This disease is different for everyone.

8) 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? 

Currently I am at the point where it is only 10 walking minutes before swelling starts and I use a cane and an electric power scooter as I am in so much pain and there is definitely no long distance walking for me.

No I do not believe my condition would be much different if I had not had surgery this is due to the fact my right foot (surgery was on left foot only) has multiple lumps in it and it gives me lots of shooting pains as well.

9) What treatments have you tried since surgery and have any of them helped at all?

I have had cotizone shots, I have had iontophoresis steroid cream, physical therapy, and lots of different oils and gels and ointment remedies on the internet. But for pain I have been on Tramadol, Lydacaine patches, Hydrocodone,Gabapentin,Relfan and most recently Nuycenta. No therapies have helped thus far. I am waiting for more research and a cure please. I know I am not the only one that has this disease to this extent. But until I found you I felt like I was a big whiny baby and all alone in this process of no hope. But I found you and at least I have someone else that understands the pain that occurs is real and hurts like no other.

Thanks Becky for answering the questions and hopefully this article will be of use to someone out there looking for answers.