Ledderhose Disease is a non-curable disease which affects the feet and is related to several other diseases such as Dupuytren’s Disease and Peyronie’s disease. Sufferers may have symptoms from just one or sometimes a combination of all three. They are commonly found along with other conditions too.
As long as I can remember, even back into childhood, I would from time to time suffer cramps in the soles of my feet. This would happen particularly when walking on sand or anywhere that the soles of my rather flat feet would be stressed. Usually, shoes would offer support and I wouldn’t have the cramping tearing feeling that something just wasn’t right, but even under normal circumstances occasionally I would still have the feeling of a shooting pain in one or both of my feet.
Fast forward to my forties, and after emigrating to Australia I noticed a small lump in the sole of my left foot. This continued to grow and was joined by “friends” on my right foot. Concerned it “might be cancer” as anyone is after a few hours with Dr Google, I made a rare trip to the doctor to see what I could find out.
An appointment for an ultrasound was booked and after some time spent with a sole full of lube and a not entirely unpleasant experience I was called back to my doctors for results. It was apparently a plantar fibroma – basically a non-threatening lump on the sole of my foot – my GP said I could probably have it cut out if it caused me problems or it may be possible to have a cortisone injection in it if it got any bigger though he wasn’t too sure about possible side effects or issues that could be caused by either treatment so suggested a monitor and do nothing approach until I started feeling greater discomfort. I was happy with this diagnosis and thought it a sensible approach.
Over the next few years the lumps in both feet continued to get larger, and although still not in pain I did take secret joy in slipping off my shoes at gatherings and showing friends my deformed feet seeing their looks of horror – especially the sole of the right foot now where the arch was almost entirely lump and no arch. The left foot had mostly seemed to stabilize with a lump the size of half a golf ball in the arch. Both lumps, although resistant to massage and tough were relatively soft and pliable and still didn’t really cause me too much discomfort, unless walking barefoot when they would hurt a little and I would get the old familiar feeling of small cramps or tearing in the soles.
Before Treatment Sought
Around this time, I was diagnosed with an auto immune condition and started treatment for thyroxin deficiency. Whether there are any links to this, or just total coincidence, I started to notice that the lump on the right foot started shrinking. After 12 months of being on medication it almost disappeared and was certainly nothing like as large as it had been. As I was getting older and not particularly fit (I’d never found an exercise regime I enjoyed or could stick with) I started taking our dogs for long walks in the morning before work, starting with 3-4km and gradually building up to 6-7km every day, and up to 12-14km per day on weekends. Life was good. Weight was melting off me and fitness improved every day.
Towards the last quarter of 2021 I noticed new pains in both feet but this time in the pads at the front just behind the toes. On feeling my feet, I could feel new lumps developing there and a stiffness in my toes that started to make bending them, and hence walking more of a chore. These new fibromas continued to grow – whilst the left foot arch lump stayed relatively stable in size and the right foot arch lump – although I could still feel something there, was virtually impossible to see. As the days passed, these new lumps grew larger and started to cause some real pain and concerns. By May of 2022 walking the dogs became too painful and I stopped. My average speed of 6km/h had dropped to a little under 5km/h which doesn’t sound much but it’s the difference between being able to have a brisk walk and a gentle stroll. Pain levels were too high to walk recreationally and still take any pleasure from it.
Time to investigate treatment options.
By this time, I had thoroughly investigated any information I could find on this condition and found out that it’s a fairly widespread non curable disease called Ledderhose Disease. People all over the world suffer with it and many others had it far worse than I. There are several internet and Facebook support groups which do a good job of providing anecdotal information though relatively little research has been performed on the condition, so no-one really knows what factors make one susceptible to it, or even what really causes it.
Treatments vary, though the one thing that seems to be common is that any cure comes at a cost – loss of some mobility, and possible return of the fibromas. In fact, surgical removal which is very invasive seems anecdotally to actually promote the growth of the fibromas with many who have gone through the process of operations to remove theirs having them return within 6-12 months.
Other treatments aren’t available universally – and are dependent upon approval from whichever country you are from approving the use of specific treatment for this purpose – for example in the USA, hyaluronidase (an enzyme treatment) can be injected with some success to dissolve the fibromas over a number of sessions using ultrasound to ensure proper targeting. In Australia, this enzyme is licensed for medical use, but not apparently in this way, and is available for cosmetic treatments but not treatment of fibromas. Other branded treatments that were previously available (e.g. Xiaflex) have since become unlicensed and I haven’t been able to find out exactly why, or what the implications of that are for those that may have already been treated with these for whatever condition.
Other treatments available locally in Australia are generally similar but can vary from state to state. The first treatment most are offered are orthotic insoles for shoes – this works for some, but I found them very uncomfortable, and in my opinion a temporary fix only as these fibromas seem to keep growing so the orthotics would need continual adjustment to ensure they are doing their job. Generally, the most common treatment that gets offered is surgery. This is very invasive, with a long recovery time and has a poor record of recurring problems. Sometimes the problems can lead to total removal of the plantar fascia, and I have even heard of an instance of amputation of the foot following multiple complications. Obviously not something I really wanted to consider.
I further investigated shockwave therapies and radio therapy which are both available locally. My current GP is suggestible to a well-researched case and was only too happy to provide the referral I needed once I had settled on my course of treatment once I had provided him with alternatives, possible outcomes from the treatments available in our state.
Once I decided that radiotherapy would best suit me, I had the referral I needed and within a few days had an appointment to see an oncologist, and other appointments with a cancer treatment nurse and admin people to give me all the information I needed to confirm if this treatment would be the best for me. No pressure to sign up and as much time as I needed to decide. Medicare meets a large portion of the costs and although I have no medical insurance, apparently radio therapy isn’t covered anyway so any out-of-pocket costs would need to be met by me anyway.
Emotive words - oncologist and radiotherapy. Obvious associations with cancer, and although these are tumours, they are not cancerous. Whenever I have discussed this with friends, family and colleagues I have gone to great effort to try and explain a little about the condition - the minute you start to talk about radio therapy you can see people get that knowing look and start to wonder how much time you have left…
At the end of 2022 I signed up for a course of treatment – total time from getting the referral from my GP, to starting the treatment was a little under three weeks, starting 30th November 2022 and including the initial consultation, and a follow up CT scan to see the extent of the areas to be treated, and creation of templates for both feet for lining up the linear accelerator accurately during treatments. Treatments are over 5 days, starting Wednesday, with a break for the weekend and concluding the following Tuesday. Then again, a couple of months later the same process – in my case 5 in November/December and concluding with 5 more sessions in February 2023
Left and Right the Day Before treatment
The Treatment.
By this time the fibromas were giving me a lot of pain and on my left foot, I could no longer put my second toe (next to the big toe) on the ground, and it sat at a weird angle suspended by the fibroma behind it. This was my most painful area and made it difficult to do anything other than short walks – any kind of running or vigorous activity was out of the question.
After having the CT scan and fitting of templates for treatment I was quite enjoying the attention. To align the templates on each subsequent visit I was informed that I would be tattooed on each foot – just a blue dot on the upper part and the diagonal opposite part of my foot. This had been the most painful part of the treatment to date with the tattoo being done with a long needle jabbed into the rear of the big toe, and the sole of the foot toward the heel. Still, at least I could say I’d “got ink” although you’d probably be hard pushed to find any evidence of tattooing, and I suspect that in months to come they will fade away totally.
Upon arrival for the first treatment, I had been given a barcode for check in – this means I can scan in when onsite and go through to the waiting room behind the normal reception making for a very efficient appointment as anyone that needs to know I have arrived is notified. A short wait and I’m taken through to a darkened room to meet the linear accelerator of which there are two at this site. I’m prepared and lay down on the bed on my front with my feet supported – the templates are fitted, along with some doughy material to support the underside of my toes, my feet are marked with a pen so the machine knows where to deliver the radiation, and some cooling synthetic skin like material put on the soles so the machine can get the right depth. I am told to try not to move, then the staff leave the room and for maybe 60 seconds I am left alone whilst the machine directs the beam into my foot to do its stuff. The technical side of it is all pretty complicated but my understanding is that basically the fibromas are disrupted and broken down at cellular level, any damage done to normal cells is repaired by the body, whilst the fibromas are unable to repair and become smaller and softer.
The entire process is repeated for the other foot.
It all takes around 10 minutes in total and then the lights come back on and we’re saying goodbye until tomorrow.
I walk out from the facility and get back in my car and drive home wondering when I’ll start feeling any benefits and when the side effects will kick in. At the initial consultation I was informed that it could be 6-12 months before I noticed any improvement in my condition, although it was usually a lot quicker than that.
Possible side effects to look out for were changes in the skin colour and dryness, feelings of tiredness, possible hair loss in the treated area amongst others.
Directly after treatment showing template marks
After treatment.
Within two treatments the pain associated with my second toe had reduced – I was sure it couldn’t have been related but felt very pleased that things seemed to be progressing very quickly. During and after treatment it is important to moisturise the areas being treated as the radiotherapy process can cause dryness of the skin, so I was very conscious of applying moisturiser to the affected area as often as possible. Washing the area with non-scented soaps, and careful drying, then no use of talc or other deodorant should be used.
By the time my first round of treatment was complete the usual pains had returned, and I didn’t really feel that I had received any benefit, but with a further treatment to come, and possibly no expected improvements for 6-12 months I could be patient. At least my pain levels weren’t any worse… were they?
After a couple of weeks, I started to feel a lot of pain around the area of the sole that adjoin the toes. I had a couple of follow up calls with the oncologist and resolved to bring my concerns to his attention. In the mean time I tried to find out a bit more about side effects from radiotherapy – mind blowing stuff – I realised that although I couldn’t see any evidence on the skin, this would probably be due to blistering under the skin – it certainly felt like blisters and continued to give me pain for the next 10 days. By the time my consultation arrived I was actually feeling a lot better and most of the pain had gone, though I was informed I shouldn’t have waited for the consultation but contacted the specialist for some pain relief immediately.
Yellowing showing extent of blister area
25 days after the first treatment had completed, I felt I could tackle a small walk and managed 4km which I repeated for several days, carefully observing how much I could do without causing further pain and anxious that I wasn’t going to suddenly make things worse.
36 days after the first treatment finished, the area I had suffered the blistering pain actually peeled from the soles of both my feet, leaving fresh skin underneath but with no further pain.
How they look during flaking
As time passed, every day the pain receded and gave me hope that the pain, if not the fibromas was on its way to disappearing entirely. The fibromas were smaller and softer to the touch - not just hard painful lumps but now yielding to a prod or poke. By the time 45 days had passed, I was back to walking every day and just the usual aches and pains expected at my age. To the point that I considered my treatment a success and was questioning if I even needed to take a further 5 sessions. Clearly I had paid for, and committed to the full treatment and was hoping for additional improvements, and continued along the path already set.
The second treatment
On Wednesday 1st February 2023 I returned to the specialist rooms for the first of a further 5 treatments on each foot - this time I was coming from a position of little pain, and knew better what to expect from each session - indeed, one of the radiologists suggested that it was a little like getting back on a bike.
After the first session I noticed a little more pain in the toe joints on my left foot. A cramping feeling that would come and go. Not terribly painful, but annoying as I had virtually no pain before this treatment commenced. The next thing I noticed was the feeling of exhaustion. This had been spoken about as one of the possible side effects of radiotherapy before and during my first treatment but I hadn’t really felt it until the end of the first round of sessions - and if you’re anything like me your default condition is “tired” anyway so how would you really know? The treatments followed Thursday, Friday, then a weekend break and a slight departure for me on my return Monday - my treatment was a morning treatment instead of a late afternoon treatment. This was proof to me that I really was being affected by the radiotherapy as I felt exhausted and hardly stopped yawning throughout the entire day.
Left foot - penultimate treatment
Right foot - penultimate treatment
The final treatment was back to the usual time on Tuesday, preceded by a consult with the oncologist, and followed by an interview with the nurse. We spoke about how things were going and that I was generally very happy with the treatment and felt I had certainly benefitted.
I walked away from the treatment rooms with an anticlimactic feeling - it was all over - obviously my body had the hard work to do now but I have a much better idea of what I was likely to go through over the next few weeks as my body heals. The nurse suggested that the obvious fibroma remaining on my left foot may entirely disappear and at that point it was certainly much softer, smaller and more compliant than it had been before treatment. I did consider how many times I had walked away from the treatment rooms, and mentally compared the first time to the last and how far I had come walking normally now without the limping I had become accustomed to.
A couple of days after the end of treatment and the soles of my feet, in particular the left, were pink and a little tender. The fibromas looked a little bigger than they did before the second round of treatment began, and I was expecting the deep tissue blistering to arrive any day. It certainly made long walks uncomfortable so I decided to give them a miss for now. I was moisturising every day as recommended and the skin was intact and not too dry at this stage. I was still feeling quite weary. All these side effects can be considered normal. The tiredness should gradually go away over the next 7 - 14 days, and I expect that around the 21 day mark I should be starting to adapt to a new normal with less pain and diminished fibromas.
Four days after the end of RT (Saturday) I could really feel the deep tissue discomfort similar to that after the first round of treatment developing. I also noticed (similar to the first treatment recovery) small discoloured dimples on some of the more tender areas of skin. Around the size of a match head and quite numb to the touch. By Sunday the pain had really kicked in and made getting about without shoes impossible. I was still avoiding lengthy walks but with a decent pair of shoes walking was just about bearable, but if any gravel or stones happened to fall under my soles I felt like the princess in “The Princess and the Pea”. By Monday I felt a lot less tired but the pain in the area I got the blistering was increasing. I was hoping that the recovery process for this round might be a lot faster - it would seem not! Looks like I might be suffering for another couple of weeks.
Example of second round blistering - Left foot
This update from 23rd February or 16 days after the second treatment ended. I had forgotten much pain the blistering caused. At least this time I had been prepared for the possibility of this happening but just didn’t remember how bad the previous pain had been. For at least a week the pain increased beyond comfortable levels, where I felt it necessary to ice the affected areas and take ibuprofen for some relief. I ended up using a topical pain relief cream which I stored in the fridge and had the double benefits of adding cooling to the area and the the also whatever was in the cream to numb the pain. It was so bad I spent the weekend avoiding walking at all with my feet up. The build up was gradual from day 5 but working (I’m on my feet all day) was difficult and by the weekend (I’m fortunate to Saturday and Sunday off) I spent the whole time with my feet up. By the Monday morning however the pain had considerably subsided - this was now day 13 after the end of treatment.
Since then, every day has seen an improvement, and I really feel by today ready to tackle a walk with the dogs (other than that the daytime temperature outside is 40C+ which means I’ll rest until it’s cooler…). I also noticed today that the fibroma on my left foot has continued to flatten and soften.
Today is 9th March. Two days ago I had my final telephone consultation with the oncologist, who was happy with my progress. To be honest I rarely think about the state of my feet now apart from the odd grumble from the second toe on my left foot which is a little curled compared to the others and I suspect a shrinking of the tendons causing this. He also said that I had responded well to treatment and although he wouldn’t commit when I asked him if any recurrence was expected down the track he though it would be unlikely. This will probably be my last update on here for a while, though I may return to post update pictures as the soles of my feet change. Right now the existing fibroma has continued to shrink and flatten. I’m happy with the process and results as four or five months ago I was struggling to walk any distance due to the pain and discomfort, had increasing lumps on both feet and very painful areas.
13th March. Went for a long bike ride today. The result was that the tightness I had been feeling in my calves has significantly eased. Stretching the tendons has certainly helped stiffness and nagging low level pain. Maybe exercise IS the answer.
18th March. Just a quick update to say that the peeling arrived today. Still healing then! I thought there wouldn’t be any more changes to my feet, seems I was wrong.
So what next?
Despite my very good experience with radiotherapy, if it had been more easily available I think I would have taken the option of enzyme injections to treat my fibromas as the anecdotal evidence certainly seems to in general be very good. with radiotherapy I think it’s generally accepted that the success rate is around 80% with long term results over 5 - 10 years. However, if Medicare hadn’t covered the cost of the majority of the treatment it would have been worth serious consideration to travel internationally and have a bit of a holiday overseas whilst getting treatments - cost would likely work out cheaper, or at least comparable and success rates are very good.
During online discussions with Dr Eddie Davis a specialist from the US he suggested that treatments may be possible here in Australia - here’s an excerpt from our conversation from his Facebook group:
“Thank you for your post. Unless Australia has a rule against off label use of medications, something I would be surprised if so, hyaluronidase is available and could be used for treatment of Ledderhose Disease. Off label use means that an approved medication is used in a manner that is different for what it is originally intended. Some specialties, such as neurology, have as high as a 60 percent off label use rate of medications in the US.
The issue is finding a doctor who is willing to take an interest and make use of a medication. Most of the doctors on our list of those using hyaluronidase were not found by me. They were found by persistent patients making many calls until they found someone who would say yes. The doctors who start the treatments generally adhere to the practice due to its high success rate. At some point, someone will "break the ice" in Australia and get a doctor interested.”
From my research into available treatments and options open to me here in Australia, and being involved in social media groups there is definitely a demand here for support and treatment of Ledderhose and also Dupuytrens disease without the trauma caused by invasive surgery. All it needs is for a specialist in this field to take it up and there will be a long line of people waiting at their door for treatments.
I’ll be updating this information as things happen until we have the completed journey documented for others that are curious about treatment - in particular radiotherapy - for Ledderhose disease. If you’ve made it this far well done and thank you. Please leave a comment in the reply section at the end if you are able.
Previous published studies of this treatment suggest that I should continue to see improvement over the next 3 - 12 months - we wait and see!
Updated 29 May 2023:
Nearly four months have passed since the second treatment now. Whilst further improvement hasn’t exactly been dramatic, at least things haven’t got worse (yet) though as an eternal pessimist, this is something I worry about on a daily basis. Any little twinge or pain and I worry that the fibromas are returning. The arch of my right foot remains clear at the moment, but the arch of my left foot still has the fibroma stuck at around the same size as the last picture. The second toe on my left foot is still unnaturally high but at least doesn’t give me any pain. I do occasionally get a pinching feeling in the joint of the other three toes on my left foot, not unlike cramp but not as severe and it rarely lasts more than a moment or two. As it’s now winter this could easily be dismissed as damp/cold weather or rheumatism related. I am now extremely careful especially first thing in the morning that I don’t go barefoot, and make sure I wear something to offer support to my whole sole. I haven’t gone back to early morning walking with the dogs yet, but where I’ve done a four or five km walk I haven’t suffered any ill effects or short term pain.
I’m still calling the radiation treatment a success but with the caveat that we don’t know he long term effects of localised radiation treatment and there is a risk of cancer in this area in the long term, but that this was discussed during my consultations, and during that time the pain I was feeling meant it’s something I was willing to risk. Additionally, I don’t know that this is a permanent fix but as there is still currently no known ‘cure’ for this disease, I am just thankful that I’m not in pain every day like I had been before treatments commenced.
The treatment itself wasn’t too bad, fitted in with my daily schedule and wasn’t inconvenient, but the paid during recovery, burning, and skin flaking was something I wasn’t really expecting, despite having been warned about side effects etc.
2 September. Update.
So although my fibromas haven’t totally gone, I haven’t had any issues with them at all. I guess I was somehow expecting them to be gone by now but I guess they’ll always be there. The size varies by the time of day - a little larger by the end of the day, and generally very small at the start of the day. No pain really, the occasional twinge, and I had to break in a new pair of work boots yesterday, so my left foot (always the first to complain) is a bit sore, particularly around the toes - I get a cramping feeling here if anything unusual happens - too much walking, new and tight shoes etc but not crippling pain that stops you in your tracks. In fact, I managed 10,000 steps today WITH sore feet and walked through the pain until now I have tired but pain free feet.
If you’re looking to ease your Ledderhose based issues, I say investigate the options available to you. In many places either surgery or radiation seem to be available as long as you have done your research and can convince your GP to refer you to a specialist. Long term, radiation is still a “risky” option. No one knows the potential long term effects of exposure to large amounts of radiation, though a friend of ours who was suffering with cancer had massive doses to deal with her tumour - the alternative is obvious. With Lederhose it seems to be - how much pain are you prepared to put up with before you seek some kind of treatment. It’s probably a more common disease than you think and with just a little digging it’s easy to find people in your peer group that are suffering, or have suffered with the condition. Until there is more awareness about the issues I don’t imagine treatment options will change but other treatments are available - but just not locally.
This will likely be my final posting on this blog unless something significant happens - so thanks for your support. I assume you have found this post through your own research and are suffering similarly, so good luck in whatever you decide and I hope your pain reduces as much as mine has.
Good luck to you in your personal battle.
