Monday, 8 April 2013

DD and LD patient, Xiapex (DD) and RT (LD) in depth interview

Today I am posting an interview that I have done with someone who has contacted me through this blog, they did this a while ago as they were thanking me for all my hard work and they have been in regular contact asking about my progress, the progress of the pregnancy and updating me on their progress. Julia comes across as a really nice person and I hope to meet her in person soon and here are the (in depth) answers that she gave to the questions I Put to her about her experience with DD and LD. Enjoy! 

1) Ledderhose is a part of a group of related conditions, which of these conditions do you 
suffer from?

I suffer from both Ledderhose Disease and Dupuytren's Disease.

2) How long have you been suffering with these conditions and how have they developed over the years?  

I have suffered from Dupuytren's since mid-2011 when I noticed the small finger on my left hand was beginning to turn inwards towards the palm. Rather than wait until the contracture caused problems with day-to-day living, I chose to have Xiapex treatment in December 2011. Unfortunately this seemed to kick-start aggressive Dupuytren's and Ledderhose Disease. Just twelve months later, in December 2012 I had dermofasciectomy and skin graft on the same finger and the ring finger of the left hand is now also showing signs of contracture.

I have suffered from Ledderhose Disease for just one year. I first noticed lumps appearing on both feet in March 2012 – a few months after the Xiapex treatment. They grew very quickly and it was soon difficult to walk without considerable pain and felt rather like walking barefoot on hot pebbles.

I am now 66. 

3) These conditions are often genetic, do you have a family history of these conditions? 

No, none whatsoever.

4) What treatments have you received? 

a) For Dupuytren's?

NHS treatment other than surgery for Dupuytren's Disease was difficult to obtain locally. I was advised to wait until the contracture was restrictive as “it will only come back”. I thought this was a very negative attitude and decided to carry out some personal research.I discovered Xiapex was being trialled in the south of England. I contacted the consultant involved, Mr. David Warwick, and as soon as Xiapex was cleared by NICE and available to private patients, I had my little finger injected. Initially the treatment was very successful and the finger was straightened but within 24 hours I developed a rather large blood blister, followed by swollen lymph glands. The blood blister held up the healing process, the fitting of a splint and the start of physiotherapy. Within weeks, I noticed that the ring finger on the same hand had also begun to contract. Prior to the Xiapex injection this finger was perfectly straight. Immediately after the injection it was very swollen but I was told this was not unusual. As the swelling subsided, the finger began to contract towards the palm and has continued to do so. It is now approximately 30ยบ from the PIP joint but oddly there are no visible cords or nodules associated with this contracture. Six months after the Xiapex treatment, the little finger had bent inwards again. Normally a further two Xiapex injections can be given but because of my reaction to the first injection the consultant who had carried out this procedure did not consider me to be a suitable candidate for further Xiapex injections.

My GP referred me to see two local NHS consultants who totally disagreed with each other about how to proceed. (Neither of them knew much about Xiapex.) Dr. Shaffer,  who at that time was carrying out radiotherapy treatment on my feet, recommended I visit a hand specialist in another part of the country, Mr. Chris Bainbridge. Mr. Bainbridge recommended further Xiapex injections despite having been told my previous history. He strongly disagreed with the surgery suggested by one of the NHS consultants I had seen locally but felt a full dermofasciectomy with skin graft would give good long term results.

In November 2012 I had a full dermofasciectomy with skin graft carried out by the same surgeon who had undertaken the Xiapex injection, Mr. David Warwick. This was performed privately because although I had been on a NHS waiting list throughout the summer, I still had not been given a definite date for surgery. The finger is not completely straight but is very much improved. Also, I continue to wear a splint at night to straighten the finger as it does tend to bend inwards during the day. Given my personal experience, I would not choose to have a Xiapex injection again but I do appreciate Xiapex has been very successful in other patients. I am concerned that not enough has been done to explore the possibility that a Xiapex injection in one area can result in the onset of Dupuytren's and Ledderhose Disease in other parts of the body. This has been reported by many patients (see for example the Dupuytren's Society web site) and although medical staff tend to dismiss these concerns, I most certainly had no sign of Dupuytren's Disease in any other finger on my left hand or Ledderhose Disease in my feet, prior to the Xiapex injection.

b) For Ledderhose?

My GP had even less knowledge of treatments for Ledderhose Disease than for Dupuytren's  Given my experience with Dupuytren's  I looked on the internet and found Gary’s Blog detailing his experiences as a fellow sufferer. Thanks entirely to Gary, I learned about Dr. Shaffer and radiotherapy treatment. I arranged to see Dr. Shaffer straight away as a private patient - this was within a few months of the first signs of the disease. I had radiotherapy a few weeks later. 

5) Are you currently satisfied with any of the treatments you have received for either 

The radiotherapy treatment for Ledderhose Disease has been a complete success. I cannot thank Gary Manley and Dr. Shaffer enough for quite literally giving me my life back. In March 2012 I could only see a future full of pain, being confined to a wheelchair and having repeated surgery on both feet. Since having radiotherapy, the lumps have become pain free, smaller and two have disappeared altogether. (I recently spent four days sightseeing in London – up and down subway steps, walking round exhibitions, galleries, etc. from early morning until late evening accompanied by someone far younger and fitter than myself. I wore flat leather lace-up shoes but no special orthotic aids. I was completely pain free. The weather was unusually cold for the time of year and this could well have contributed to the lack of pain. Unlike some Ledderhose sufferers, my lumps like the cold, especially walking barefoot on tiled floors! The true test will come when I spend a week exploring Paris in the heat of the summer.) I feel that the success I have had with radiotherapy treatment for Ledderhose Disease is due entirely to the fact I was treated very early on – within months of the first lump appearing. Although the lumps then grew at a fairly alarming rate and became very painful, the radiotherapy treatment appears to have halted any progression of the disease. 

I only wish I had had been made aware that I could also have had radiotherapy for Dupuytren's contracture when it first appeared. (Neither my GP or the consultant I saw regarding Xiapex treatment gave me any information about radiotherapy). Even  now, having had very successful radiotherapy on my feet for Ledderhose Disease, the orthopaedic surgeon who carried out both the Xiapex treatment and dermofasciectomy, Mr. David Warwick, seems sceptical about radiotherapy and doesn't appear willing to give his hand clinic patients information about this method of treatment. I find this most odd because I would have thought that radiotherapy should be offered as soon as a cord or nodule becomes visible or a finger starts to contract. Radiotherapy is to me far less of a risk than NA, Xiapex or dermofasciectomy for Dupuytren's Disease, all of which could result in infection/tendon damage/numbness etc.

I think there could be more people suffering from Ledderhose and Dupuytrens Disease than GPs are aware of. In my own small village I have discovered three further patients. (They all thought it was something which happened in old age – arthritis or cysts – not worth bothering the GP with!)

6) Have you found any resources that have been helpful for with understanding and getting treatments for these conditions? 

The internet and in particular Gary’s blog have been the foundation of my learning about Ledderhose Disease. By following Gary’s leads and guidance I have met with Dr. Shaffer and subsequently Mr. Chris Bainbridge. These two consultants gave me a great deal of information about radiotherapy, Ledderhose Disease, Dupuytrens Disease and the Dupuytrens’ Society.

Patient forums give one an insight into what to expect from the various treatments available, although we are all individuals and have varying levels of pain tolerance and success rates.