Gary’s experiences with Ledderhose disease

I am a Ledderhose disease patient from the South of England and I have had this condition for nearly 3 years. It started as a small lump in the arch of my foot that I was not too concerned about, but after playing badminton or running it would become painful so I decided to see my GP. My GP looked up the condition as it was not something he knew much about and as a result I was sent for physiotherapy. To cut a long story short I was told by two physiotherapists that there was nothing that they could do for this condition, and I was sent on my way to see a specialist at my local hospital.

As a result of my appointment with the specialist, I ended up having an ultrasound guided steroid injection into the lump. This was something that I had read about and had seen some positive comments amongst the many negative ones saying that it hurt a lot. For me it turned out that both the positive and negative comments were true. I found that the injection was very painful and once the local anesthetic wore off I was in a significant amount of pain for around 24 hours, but I also found that my condition did improve. After the injection I was still in pain but it was much more bearable and I was much more able to continue with my every day activities.

Less than a year later though I found that the pain started to come back, and things were rapidly getting worse and I was walking on the side of my foot. This led me to return to the specialists where I was told they would try custom made orthotics.

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These are basically shoe inserts that take the strain from around the lump and should therefore decrease the pain. I recorded a video of the difference here . At the same time I was also sent for an MRI to confirm that the condition being treated was Ledderhose disease. The MRI did confirm that it was Ledderhose and the orthotics did help, but only for a limited period of time.

When I went back to the specialist after only a 3 month gap the lump had grown a lot. However I was told that only surgery could be offered by the NHS, but that it was not a good option due to high rates of the condition coming back and the poor recovery time for surgery on feet. Through my own research and setting up a blog on this condition, I found that radiotherapy was a better option, and so I asked them about it, but drew a blank as the NHS had no information that they could give me.

My search for someone who could do radiotherapy led me to the British Dupuytren’s Society, where they were able to provide me with a couple of people to contact. I found that Dr Shaffer and his team at the Royal Surrey County Hospital were very helpful and I booked a free consultation to see if I was a good candidate for radiotherapy. The cost of the procedure was going to be £1750 and as such I had a lot of help raising the money, and so my wife, Mum and I all headed off to Guildford to see Dr Shaffer and see what the news would be. Dr Shaffer was very professional and observed me walking into his office to see how badly I was suffering, and there was a noticeable limp. He asked about family history and the many other factors that increase the odds of getting the condition and then asked to see my feet and hands (to check for Dupuytren’s). As expected he found no signs of Dupuytren’s, or Ledderhose in my right foot, but the large lump in my left foot was again confirmed as Ledderhose and he thought that I was a good candidate for the treatment. He explained to me the risks of increased cancer when receiving this treatment, but considering the pain I was in I felt it was well worth the cost and risk.

clip_image002_0005About 6 weeks or so later my treatment started. At the start I was greeted by Dr Shaffer and we went through the process before starting radiotherapy. The lump on my foot had a couple of circles drawn around it, one to indicate the radius of the diseased tissue, and one to show the area to be treated which had a safe margin around the diseased tissue to ensure that nothing was missed.

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I was then treated by several people throughout the week. The process was very quick and easy, I was taken into a room, laid down on a bed, had the radiation machine lined up with the circled area (it was marked using permanent pen) and I then had to lie there for 5 minutes and come back the next day.

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In total I had 2 weeks worth of treatment, with each week separated by 7 weeks, and each daily dose was 3gy of radiation. I had no problems with delays or with the staff as everyone was nice and helpful, and always asking how my day was going and whether there was any improvement. I finished treatment in July 2012.

I was advised that when I had finished the treatment I might find that my foot got very dry, and if it did then to treat it with E45. To start with I had no problems with dryness, but a couple of weeks after treatment finished I started to get a very dry foot and have even started to develop dry skin bubbles in the treated area that look like blisters but don’t hurt. I do find that E45 helps and the condition has improved since being treated.

Before treatment I was not able to walk pain free at all, whilst now 2 months post treatment I can walk for around 20 clip_image002_0008minutes before my foot makes me need to take a break, though I still can’t exceed more than an hour or so in a day. My treatment and my blog have led to me being contacted by many people, and I always tell them if they are from the UK how helpful the British Dupuytren’s Society is, and without them it is unlikely that I would have found Dr Shaffer. I have my 3 month follow up appointment with Dr Shaffer in October 2012 and I am interested to see what he is going to say.

If anyone would like to contact me than please e-mail me at ledderdisease@gmail.com.