Thursday, 26 July 2012

My long but successful Ledderhose disease story

My 200th post

I thought that it was about time that I updated my story, so here is the whole story, the old stuff is in blue, the middle update in red 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, though see the final update for radiotherapy which is helping now.

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 fiancĂ©, 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). 

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. 

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