Monday, 14 November 2011

Plantar Fibroma - a real pain in the foot

Plantar Fibroma and my experience: (posted 14/11/2011, Updated 26/07/2012, April 2013, October 2013, August 2015:

This is a relatively unknown disease that can be painful and debilitating; here I am going to tell you my story and as yet unsuccessful attempts to alleviate the problem. 

In the Beginning:

Growing up I was sure I had a little bump in the arch of my foot but there was no pain, no growth and nothing to be concerned about, then two years ago out of nowhere like the little menace that it is it started to grow and started to become really painful. I headed off to the doctors as it was starting to interrupt with my daily life and this was not good enough. My GP has a look at the lump and annoyingly decided that it needed to be prodded which of course just made it more painful. He had a look in a book to confirm his suspicions and then informed me of what I already expected that it was probably a plantar fibroma.

A plantar fibroma is a benign tumour that forms in the arch of your foot. I think a good way of thinking of it is basically that you have a marble stuck in the middle of the arch of your foot and it is like stepping on that all day. 

Seeing the GP:

Being a research scientist I was intrigued to see what I could find out about this nasty little thing, so I did some online searches using both just Google but also Pubmed to look for research articles on the condition. Now this was a few years ago so I can't remember all of the details but basically I found that Physiotherapy can't help, surgery can't help as it just grows back most of the time, steroid injections might help but might make it worse and that there are several other types of treatment but that are not available in the UK (well at least not on the NHS). 

So after my research I was quite surprised when the doctor referred me for Physio.... I waited for an appointment and then I waited some more, I was in so much pain that I decided, as my parents said they'd pay, to go to a private physiotherapist. I went along and explained what I had, she was very experienced and very helpful, but said that in all of her years she had only come across one other case and that there is no known way for physiotherapy to help the condition. Being a student (which means little money) I needed to see the NHS physio before being put through to the foot specialist, luckily I got one pretty quickly after the above private appointment as I said I was happy to see a student physio, they told me the same thing as the private one and sent me on my way. I did learn from the private physio that it would be best to invest in a good pair of running trainers and wear them all the time and this did help decrease the pain to some degree. 


I was getting pretty stressed at this point, my foot was killing me, there wasn't and if I am honest still isn't really a step in the day where I don't feel it, and many times I can just be lying in bed and it will twinge and I'll be in a lot of pain for 30 seconds or so....

The specialist appointment 1:

Anyway I was finally going to see the foot specialist to get answers. I went along and they said pretty much what I already knew, if I was to have surgery (let's face it if you hear tumour you do think surgery) the chances of it growing back are very very high and in all likelihood it is going to come back faster and harder and meaner and it really is a last resort, they were nice however and said that maybe at this point the best option would be to try an ultrasound guided steroid injection into the fibroma. 

The steroid injection:

A few months later... with little progress in any way I was lying on a bed waiting for the injection, I had been told that I would require local anaesthetic otherwise the injection would be incredibly painful, well the local was really really painful but the steroid injection just felt like some liquid surrounding the lump. I was told to avoid sport for a few weeks but otherwise I should be ok, well I stupidly decided to head off to the lab, not realising that I was only pain free because of the local, a few hours later that wore off and I was in a lot of pain and couldn't walk and had to be picked up and taken home. 

Around the same time as this I started to do a lot of cycling, with my weight being a potential issue and pretty much any other form of exercise out of the question due to the foot pain and it was working, I began to lose weight. Now whether it was the weight loss or whether it was the steroid injection that helped I don't know but over the coming months the pain began to subside, I was able to play badminton again but still in the knowledge that the lump was there, it was just more in the background. 

After some relief it comes back:

Things were good (well compared to how it was) for nearly a year and then it all started again, I started to get increasing pain in my foot, increasing twinges and more and more depressed about it. A few things had changed over that year, I was no longer living with my parents but was living with my fiancé, whilst this is of course amazing it does mean I don't really have easy access to cycling and it turned out I had to be rereferred to the specialist as I had been discharged, then my referral wasn't received and I have an appointment in December. 

The pain now is at a point where I can't give a 20 minute presentation without requiring a seat, not only that but the condition has progressed to the point where if I have had a busy day on my feet I cannot bend the toes on my left foot up as the tendon in the bottom of my foot where the lump is located becomes too tight. 

The problem with this thing is that I now don't walk properly, my foot is twisted so that I walk on the outside of my foot to stop weight from going through the lump, whilst this is a good thing it causes other pains as this is not how we are meant to walk. I think as a result of this and increased weight bearing on the other leg I now have Achilles tendonopathy (or tendonitis depending on who you see) which means I now have problems in both legs, luckily the Physio can help with the ankle and it seems to be working (but that's another story). 

Along the course of this journey I have learnt a lot of things and really wanted to share my experience in case there is someone else out there with this who thinks they are the only one or who might have some helpful advice. 

The science stuff: 

I thought I would put a little bit about the science at the end, mainly because this is my area of expertise, as previously mentioned I work in a research lab on cancer research and therefore have access to a lot more resources and articles than most people with this nasty condition. This is just my experience and my opinion and I am not a medical doctor so it's just my opinion. 

What is a plantar Fibroma? 

A plantar fibroma is a thickening of the plantar fascia that results in nodules in the arch of the foot, these are normally high in collagen and it is thought that over-expression of collagen causes a build-up and that this is the main content of the lump. 

How do Plantar Fibroma's occur? 

It is not really known how they occur but it is thought that they can be hereditary but another theory is that it is a response of the body to damage, in order to recover from some damage or trauma it tries to repair but over repairs and just keeps on repairing until too much tissue is present and this forms the lump. However in very rare cases the lump can be caused by cancer so it is worth getting it checked out. 

Why do they grow back? 

As far as I was aware it was not until earlier this year as to why these things are so pesky and grow back after surgical removal. Wang et al , see here , showed that tissue from fibromas have stems cells present, this means that they are able to proliferate and make more tissue and they also showed that stems cells are not present in normal healthy tissue where fibromas are not present. They also showed a drug that can be used to stop progression of the disease, this hopefully suggests that their research might led to development of a cure or at least some kind of treatment to help anyone unfortunate enough to have it. The morphology of these lumps is also very similar to scar tissue so surgery gives more scar tissue and therefore more foundations for the lumps to start.  

Are there any related conditions? 

I thought I would also like to include a bit of information saying that there are a couple of other disease linked to this, one is present in the wrist and results in basically the same condition but of course with much less pain due to most people not bearing weight on their hands but all your weight does go through your feet and this is the main cause of the pain. 

Summary: 

Plantar Fibromatosis is a sometimes painful condition that causes growth of lump(s) in your feet, as these develop they can be incredibly painful and cause stiffening of the toes. There is research going on in this area and hopefully some sort of help will come soon. There is no cure and very little awareness. 

Don't forget that you can all help by donating your stories with these conditions or money to the BDS, by clicking the +1 Google button near the top on the right hand side, going to the Facebook page and hitting like, following on Twitter or leaving a comment here / e-mailing me, all are appreciated.  

 The picture was taken in May 2012.  




The updates: 


Second update: 

Right so onto the new stuff. So not that long after I made the above I made the trip back to the specialist and whilst the appointment was not that great as the guy was very unhelpful and was even suggesting that I may have something different I was then sent for both an MRI to confirm the diagnosis and also for orthotics to see if they could help my condition. 

So firstly onto the orthotics. The appointment for this was really good and the guy seemed to know what he was talking about and I had all the prep done and they were sent off to be made. I was quite optimistic about these for several reasons. The signs were good as the best trainers for me were the ones with most support which prior to getting the Orthotics were running trainers. The running trainers are great but they are not warm in the winter, not dry in the winter and are very expensive when you are wearing them all day every day. The orthotics arrived and I instantly took to them, I was ill with the flu at the time so managed to wear them in gradually although still quicker than recommended. At first these seemed to help but also coincided with me spending less time and with my wedding and honeymoon which of course was the most wonderful and relaxing 2 weeks of my life. 

In the few weeks since I have been back from the honeymoon the foot pain has intensified and I am starting to reach the edge of my limit and I either have to choose to have an unproductive day and risk not finishing my PhD or have a productive day and be in pain that I am not going to be able to cope with for the remainder and this is kind of the dilemma I find myself in at the moment. 

Right though back to the MRI. Not much to say about the MRI. The actual process was very simple and easy, I went along and stuck my foot in a machine and then waited a couple of weeks for an appointment to discuss it with the foot specialist. This appointment was much more successful that the first but was with the boss rather than one of the not so clever people. The man had lots of interesting points but was told that until I basically cannot walk that surgery is not an option but it remains my only option. But the MRI did confirm that it was Ledderhose disease so at least we knew what we were tackling. 

In the past 6 months or so since I made this post lots has happened and not just me getting married and my foot getting worse. I am also much more open about my foot with lots of people and I am getting lots more support from my wife, my family, my in-laws and my friends (you all know who you are). This has led to me seeking new ideas and new hope as to where I should go next. 

For starts I now have a foot spa and heated slippers which help ease the pain for a short time but that is better than nothing. I have a stall for the kitchen which helps me keep up with the house work and a walking stick for when it gets really bad. All these things help but do not take away the immense pain that I feel in my foot. This pain sometimes comes first thing and is normally present by midday and always there by 3pm and is really excruciating at the moment. 

I no longer feel that I am a one lump person. I am getting a lot of pain down near my toes on my left foot and I am worried that there maybe a lump at the base of my second toe as this area in particular is very tender to the touch. I also think I am developing the same problem in my right foot, I have started to get the occasional pain that I got when it all started in my right foot and am worried that it is now bilateral. 

This has led to me looking into lots of different treatment options and there are others out there that are not on the NHS. I am currently looking in radiotherapy as my next choice as I have interviewed several patients that have had success with this option and also have been looking at Xiapex which appears to be coming to the UK (in Devon for Dupuytren's at least). 

So I guess at the moment I am in a job that makes my foot very painful as there is lots of standing and I am in a place where my next treatment is either going to have to be costly due to the NHS not providing it or surgery which I have been told to avoid by so many people I hardly consider it an option.

So time for another update:

Right last time I left things where I was in a job where I was in constant and increasing pain and I was deciding whether to get radiotherapy. As anyone who visits here often will know I have now gone with radiotherapy and I have completed my treatment and have been keeping everyone posted as to whether things gets better or not. 

But since last time I updated this "story", a post that I only put up on 27th March, so say 3 months ago, things had gotten much worse. I was practically unable to walk at times and as such I had to take the sad but necessary step of leaving my PhD because the pain caused by the increased standing and walking was just too much to keep going.  Luckily through fund raising and generous families we got enough money together for me to get radiotherapy. 


Me getting radiotherapy
I went for radiotherapy as it is painless, has a good chance of working and doesn't require any down time other than the week you need to have it done. I went with Dr Shaffer and the UK for several reasons. One was cost, to get radiotherapy done in Germany would have been much cheaper had I needed several hands and feet done but I only needed the one and therefore with the cost of travelling it worked out cheaper to get it done in the UK and this cost was about £2000.

The choice of Dr was quite easy for me, I only found two in the local area and Dr Shaffer agreed to give a free consultation very quickly and with no fuss I was on my way to see him. The appointment with him was very good, we went through my symptoms and any risk factors that I might have and it was agreed that I was in a good position to have radiotherapy although of course with the risk of cancer it is always better to be having this radiotherapy done later in life rather than earlier. 

I was then very quickly given the radiotherapy appointment which I attended and everything went really well. In the middle of this time Dr Shaffer agreed to do an interview for this blog on radiotherapy for treating Dupuytren's and Ledderhose which has lots of detail and is very interesting to read. On the final week before my second week of radiotherapy I started to see some improvement beyond the tanning I had seen before as I started to see almost no pain at rest and a decrease in the size of the lump and this was confirmed in my second consultation with Dr Shaffer. This second week went really well and I have continued to notice more improvements with me now having much less pain when walking and it just remains for the pain when standing to disappear and I will consider the radiotherapy very much a success as long as it doesn't come back for some time to come or ideally never. 

So at the moment I am in a good place in terms of my treatment and progress and I am getting lots of nice e-mails and comments on how useful and appreciated this blog is. Though hopefully this will be the end of my Ledderhose story I am going to continue to question professionals, patients and scientists for answers and see where it can it can us. 

Update - April 2013: 

My foot has continued to improve massively, I have not used the stick this year and I am regularly playing badminton and have started the podcasts I found on the NHS website to get me running 5k. I hope that others find treatment that is as successful as radiotherapy has thus far been for me. 

Update October 2013:

I thought that it was about time I updated this post again. The main difference from last time is an improved confidence. The walking stick has not even been thought about this year and I am now running properly, in fact I have already run many 5km runs and I am doing my second 10km run next month. My foot is hardly hurting, even after the runs, in fact the impact of the condition on my life continues to decrease and hopefully this will not change. Radiotherapy is not the only option but it is the option that has worked for me. I am continuing to up date the blog with information and trying to find out as many ways as I can to help patients and spread the word. 


Thank you to every who has raised funds, run a few miles (or walked), who has commented on here, has helped in real life and especially to the one person who has had to put up with all of this the most, my wife



Update August 2015:

I have not updated my main post in nearly 2 years, now it has hit the 100 comments mark I feel that it is probably a worthwhile thing to do. A lot has happened in those 2 years even if the state of my foot has not changed greatly.

Firstly I started a low carb diet in late 2014 and have noticed that the residual pain I had in my foot has more or less gone, accompanied with this life-style I have experienced a massive (7 stone) decrease in weight and this has obviously taken a massive amount of strain off of the foot. Whether it was the weight of the low-carb that has helped I am not sure but to be honest I do think that the decrease in the remaining twinges and aches began before I had lost a significant amount of weight. The distance I have come can be seen in the fact I can run 10 miles + with my daughter in a buggy and have no problems and even play badminton the next day.

In terms of this blog the number of posts has diminished but the number of interactions through Facebook and e-mail has increased. I think the core data is now available and so it is mostly a case of updating it, improving it and interacting with patients. In search of more information we have conducted a patient survey which I went to present the results of at the International Dupuytren’s Symposium in May. This was a fantastic experience and hopefully many doctors will have taken on the information I provided and I know for a fact that I learnt a lot. The doctors do care about the patient welfare and not just where there next lot of funding it going to come from but it is a lack of information and understanding of all the options that can hold them back. After all they may feel that surgery is an ok option so why consider radiotherapy.

I have also managed to raise the profile of the condition by appearing in several local newspapers and on the local BBC news channel. I have to say that I was surprised by the success of appearing on local TV. The story only appeared once but I have contacting by a lot of patients who had seen it and wanted to know more not only about my story but also about the treatment I received. I am very grateful that the BBC put it on but also for everyone who comes to the blog and thanks me, they give me the confidence to put myself out there as I know that the blog has helped so many people.

For me the biggest change is in the running. I was running in 2013 but this basically stopped for a year, I guess because it felt like a lot of work and a risk. Now though I do not feel it is a risk and I am really enjoying my running, in fact according to my WAVA ranking (% time compared to world record) I would now actually be considered as “local class” as supposed to unclassified. Most of my running is gentle but in 2013 I was running 2-3 times a week and not great distances, I am now running between 3-5 times a week depending on my schedule and run up to 30 miles a week at the moment. I am in training for my first ½ marathon and fully intend to tackle a full marathon in the future. I am also considering starting a blog along the lines of plantar fibroma running in order to log my running achievements. I am enjoying my running and really want to share this but this blog is not the right place for that.

Anyway I am always looking to build bridges and extend the blog in any way I can, if you have any information you would like to see on the blog or think that there is a chance to work together then let me know. Just remember that like a lot of people that do great things for these conditions (thinking IDS, BDS etc) we do this in our spare time for no profit. You can donate money if you are so inclined (just get in touch or visit BDS/IDS) but ideas, plans or even pointing out a typo are all great ways you can help. Becoming a member of the BDS or using Give as you Live are fairly simply and helpful things you can do as well.

Thank you for visiting the blog and for reading, if you want more information then please ask either by leaving a comment or sending me an e-mail.   

Below is a video of the presentation I gave at the International Dupytren's Symposium in 2015.