My experience with Ledderhose disease aka plantar fibromatosis. This information is not intended to replace your doctor. Information on this blog is provided for informational purposes only. You should not use the information on this web site for diagnosing or treating.
The registration and program have been released for the next Dupuytren's Symposium and there are some interesting sessions that I am looking forward to attending.
Highlights for me will be the session on radiotherapy because 1) It worked so well on me and 2) 2 of the papers being discussed are on the treatment of Ledderhose:
Keynote: Radiotherapy for Dupuytren Disease Dr. Richard Shaffer, The Dupuytren’s Practise, London, UK
1. A Randomized trial of Radiotherapy for Dupuytren’s Disease – DEPART J. Martin, Newcastle, Australia 2. Radiotherapy in patients with painful Ledderhose disease: a randomised, multicenter, prospective, double-blind phase III trial. A. de Haan, Groningen, The Netherlands 3. Radiotherapy for patients with Ledderhose disease: long-term efficacy, side effects and patient-rated outcome A. de Haan, Groningen, The Netherlands
After this I am also looking forward to session 6 which is experimental treatments. Looking forward to getting an update on the anti-TNF treatment.
It is a shame that the conference is having to be held virtually as last time it was such a great experience meeting up with everyone and learning a lot from all the different people at a single conference.
Back then I said I would do my favourite posts over the time it has taken to amass those views and I think that is exactly what I am going to do. An interesting thing though is that it took me 3 months to get those first 1000 views and then in the last 4 months I have had 9000 page views. Not only that but on the 15th March I passed 3000 page views so that means 7000 page views in just over 3 months. Thank you everyone for visiting and thank you to both the British Dupuytren's Society for their help and links here and also for the International Dupuytren's Society who have recently added me. (I am excluding posts done before the last one I linked to above)
This interview might not be the best interview that I have done and it might not have been the most informative that I have done but it is the first one and it started a real trend as I now have more than 10 interviews and have chatted with patients from all sorts of backgrounds and whom have had all sorts of treatments. I don't want to post more than one interview so I would also like to mention here the interview with my wife who has been so supportive and this leads me on nicely to my next post.
So this is one of my favourite posts as I am talking about the wedding and this was an amazing time and I had very little pain on the honeymoon and it was just 2 of the best weeks of my life and everyone was so kind and I am so happy to be married to my wonderful wife.
This is a post that I did about the treatment of Ledderhose and Dupuytren's using radiotherapy. This is one of my favourites because I found lots of positives and I am now getting radiotherapy so this is an important post if not a favourite one.
I am also going to mention that I have had a lot of hits on here from Google and this is reflected in the search results. The great thing is that most of the hits are from search engines are clearly relative hits coming mainly from the search of Ledderhose disease or slight variations.
I think I am going to leave it at that, I know that is not many posts but I have done a lot of treatment posts and interviews and I really just wanted to do one of each.
I thought that it was about time that I updated my story, so here is the whole story, the old stuff is in blue and the new stuff is at the end in black. I have removed some of the details that were in the original post about the science and things as I have now covered that in much more details. For the original post see here.
Plantar Fibroma and my experience:
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.
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 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.
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 Physio 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. 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, for me to go to a private Physio. 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 physio to help the condition. Being skint I needed to see the NHS physio before being put through to the foot specialist, luckily I got one pretty quickly after the above 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. 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.
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 thrash everyone at badminton again but still in the knowledge that the lump was there it was just more in the background.
Things were good 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 20minute 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 evolved 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).
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.
Radiation Treatment for Ledderhose and Dupytren’s Disease:
Ok so for those who are thinking I have already covered this
but the best that I have done before was my review of one of the papers that
came out: here -
Today I am going to try to review some the data that I can find on radiotherapy for DD and LD for this I am using a couple of sources which include my book
(chapter 50) which I mentioned here: book and also another paper that
I have found which is entitled Radiation Therapy for Early Stages of Morbus
Ledderhose which may also have some useful data in it. See here for an interview I have done with one of the top UK specialists to use this treatment for these diseases.
For starters I am being a bit selfish with this post as part
of the reason for me doing this research is to see whether going to Germany and
getting radiation treatment done is the best option for me to take next. I am
going to try and set this up a bit like my previous posts on treatments which
are here for Steroid injections and here for Orthotics and here for Surgery.
Radiation for the
treatment of Plantar Fibromas / Plantar Fibromatosis / Ledderhose Disease(LD) (and
Dupuytren’s disease) (DD):
So radiation treatment means hitting the cells with a dose of something nasty
that is going to kill the bad cells but leave the good cells and therefore
leave the individual healthy.
How and why does radiation
help Ledderhose disease?:
As always seems to be stated LD is a hyper-proliferative disease and this
means that the cells that cause the disease grow at a rate that is faster
than they should and this is why you end up with excess cells and therefore a
lump. Although nowhere I can find states
exactly how radiation helps with Ledderhose disease I am going to assume that it
is on the same principle as with cancer cells and that the cells that are
growing faster are more susceptible to death when treated with radiation as they
have less time to fix the damage created and so the cells reach a state where
they cannot survive. This would also be backed up by many sources I have seen
saying that the treatment of Ledderhose is best done early on when the lump(s)
are increasing in size rather than later on when the lumps maybe bigger and
more painful but are in a less proliferative state. Actually on further
inspection the paper on the use in early stages actually says:
"The radiobiological mechanism of RT in ML is suggested to be based
predominantly on an inhibition of the fibroblast and myofibroblast
proliferation known to be responsible for the symptoms and progression of the
disease. Therefore, the optimal time for prescription of RT is given in
patients with progressive disease. The radiosensitivity of these cell lines is known
from the treatment of other benign mesenchymal disorders [31]. In addition, MD
specimens show an increase of growth factors produced by macrophages and
platelets, including the fibroblast growth factor, transforming growth
factor-β, epidermal growth factor, platelet-derived growth factor, and also
connective tissue growth factor (CTGF), which play key roles in the pathogenesis of ML and MD [31]. The impact of low RT doses on cytokine expression has been
demonstrated for analgetic RT of degenerative disorders [27–29], but as by now,
it remains unclear whether it also plays a role for RT of proliferative
disorders. Hence, this should be one of the targets of future basic research.”
Results?
So I will try to compare paper by paper and then give some sort of
conclusion based on what I have seen. So first of all I am going to look at the:
1) Radiation Therapy for Early Stages
of Morbus Ledderhose
At a follow up time point of 6-76 months (average 22.5) none of the patients
had experience a worsening of symptoms and surgical intervention was avoided in
all patients. In 33.3% of patients there was complete remission of the lumps
and in 54.5% of patients there was partial remission where there was a noted
decrease in the size of the nodules and any remaining patients stayed the same.
2) Dupuytren’s Disease and
related hyperproliferative disorders, chapter 50 – Long-Term Outcome of
Radiotherapy for Primary and Recurrent Ledderhose Disease:
So for this I have the whole of an entire chapter to look
through and try to see what useful information they have but I shall start with
their conclusions which is:
“RT (radiation therapy) is the MOST effective treatment for
primary and recurrent Ledderhose Disease due to very low progression or relapse
rates. RT permits the avoidance of primary and secondary surgical interventions
due to high remission rates in various aspects of LD disease.”
I think that is quite an impressive conclusion to come to
and I actually read this before seeing all the results in detail. Interestingly
for me one of the key things is looking at the statistics for mean time of
first symptoms before use of RT and average was actually 30 months, that is 2 ½
years and is actually about exactly the same length of time I have had this
since I first started to have any trouble. Another reason that I see a positive
for me is that 87% of the treated feet had pain and 84% had walking
difficulties which suggest unlike other studies that this can be used as a
treatment option once the disease has progressed beyond the initial
proliferative phase.
Overall they saw that in the patients that had RT 44% had a
reduced number and or size in nodules however 90% of patients that had RT
reported that they had an improvement with regards to symptoms and only 7%
showed progression. 83% of people who had pain on walking and 68% of those who
had pain at rest said they had an improvement. Both before and after radiation
patients were asked to assess their pain and symptoms on a scale of 1-10 and on
average patients said that they improved by 3.2 points in 89%.
Side Effects:
1)Radiation Therapy for Early Stages
of Morbus Ledderhose
There were six patients who developed slight erythema (redness of the skin) or
hyper-pigmentation and a few patients had increased dryness of skin. Note that
although there is an increased risk of cancer it is absolutely minimal.
2)Dupuytren’s Disease and related hyperproliferative disorders, chapter 50 – Long-Term Outcome of Radiotherapy for Primary and Recurrent Ledderhose Disease:
There are some side effects that they associated with the
use of RT for treatment of LD. Again this was mainly restricted to redness of
drying of the skin and they note that no radiogenic toxicity was found.
I was searching around for more information on this and came across the following link. Here they discuss the odds of getting cancer as a result of the radiation therapy and handily they include a 25 year old as one of their model calculation and say that the increased risk is around 0.1% increase and that this means that my chances of getting cancer with the treatment would be 24.1% rather than 24%...
My Feelings:
I think that this is an exciting area of research and it is clear that it does seem to help a lot of patients and in a lot of cases the pain has gone away. Note that although this is the case the NHS in the UK has still not approved this for use with Ledderhose and this means that if you want to get the treatment here it would cost £2000 whilst you could go to Germany and get it done for £1000 (plus travel costs). I decided to go with getting it done in the UK and have found the treatment I have received by Dr Shaffer and the team at the Royal Surrey County Hospital to be fantastic.
Video of how Radiotherapy works:
Also if you go to this Forum http://www.dupuytren-online.info/Forum_English/index.php - Most of the feedback I am seeing for radiation treatment is very positive and most of the information about surgery - my only option left on the NHS - is quite negative. So this is why I went for radiotherapy rather than surgery though if you are not as lucky as me to have some relatives to pay for it then you will struggle to afford the procedure.
Radiation Therapy for Early Stages of Morbus Ledderhose
Dupuytren’s Disease and related hyperproliferative disorders, chapter 50 – Long-Term Outcome of Radiotherapy for Primary and Recurrent Ledderhose Disease:
Updated: 17/06/2012
Adding in 2021!!!
A recent conversation reminded me that the Professor has a different theory as to why it works, given the lower dose of radiation used and the lower replication seen in these cells over cancer cells it is certainly true that DNA damage may not be the method of action.
