Dupuytren's Practice Blog

 I saw a new blog post by Dr Shaffer posted recently and it is worth considering reading it. The content relates to when is it too early to get RT for Dupuytren's? Now while I know from experience and Dr Shaffers comments the case for Ledderhose is slightly different, however it is good to be knowledgeable that it is not always the right time to have Radiotherapy. 

The Dupuytren's Practice Blog Post

I won't go into the post in detail because that is what the link is for. I have also seen some YouTube videos by Geesis care that I plan on reviewing. There is also a paper on low dose radiation therapy for benign conditions. 

I originally only scanned the article but noticed TGF mentioned which I had covered previously in a post on the pathways linked to the development of Dupuytren's. Be interesting to see whether the proposed mechanism of action of RT / pathways impacted is the reverse of the expected for the cause of Dupuytren's. 

Update 2 years after starting Radiotherapy for Ledderhose

It has been a while since I have written a proper blog post and I thought it was about time there was a serious update. Looking at the calendar this morning I realised that it must be almost 2 years since I finished the first week of radiotherapy. I looked it up and it has now been 2 years and 2 days since I finished the first week, so much has happened in that time it is hard to believe that it has really only been 2 years.

Looking back through the e-mails that I sent when arranging the radiotherapy, both to Dr Shaffer’s team and to my family I can see the desperation coming through, realising how much money was required but also the urgency. I was given 2 options for appointment time which were 2 weeks apart and we took the earlier even though it was at a very inconvenient time because we knew we wanted it done asap.

• Post about appointment with Dr Shaffer
• Post about fund raising 
• Post about starting radiotherapy 
• Interview with Dr Shaffer 

Back at that time things were really bad and I don’t think about that on a day to day basis and when I do it brings back the pain and I can remember how hard every little thing was and I am so relieved that radiotherapy worked so well for me and so grateful for all the fund raising that everyone did for me and the support I had throughout.

It reminds me that others are currently in that place and that is why I keep the blog going.

So 2 years after I started the radiotherapy I can do most things without considering my foot, I play badminton and I do the gardening (in boots without orthotics and this is ok as long as I don’t try and push down on a spade where the lump is/was) and I go up and down the stairs hundreds of times carrying plasterboard and at the end of the day I am not in pain. 

I would love for the blog and the associated forum / Facebook (I just looked and 2 new likes this morning!!!) to grow so that as many different people from as many different backgrounds in different situations can all find someone else out there that is in the same place.

If anyone has any recommendations of a blog post they would like to see or thinks there is some information missing or if they would like to do an interview or perhaps they are thinking there is another way I could provide information then please do contact me.    

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 30º 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 

condition? 

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.

3 month radiotherapy follow up for Ledderhose

So today I had my appointment with Dr Shaffer and all I can say is that everything went pretty much as I expected, to quote him, “Radiotherapy has worked extremely well on your feet” and considering I had to quit my job a few months ago because of this (FYI still the right choice) “the change has been remarkable”. Much like I have said over the last few weeks walking has become easier and again to quote “if I didn't know the lumps were there I probably wouldn't be able to find them” and “they are much softer”. That was pretty much how the assessment went, we talked about monitoring progress and I will basically get a form every year to return to Dr Shaffer to say how I am going and as he said my blog will be a good source to keep him updated anyway. There is still a change for things to progress and get better but it is likely to be much more gradual and it may not  be directly because of the radiotherapy but because over the next three months I adapt my walking and start to increase my fitness again then things are going to continue to improve and I am already very happy with where things are.  

He also congratulated me on the pregnancy of my wife and I did likewise to him, he is expecting twins in December, and then we started talked a bit about patients, being contacted through websites and the possibility that I may now make a website using a domain name that he owns (www.ledderhose.co.uk) and he is willing to look at the content and the British Dupuytren's Society are going to help as well, talking to them about that now. The idea of this site will basically be to make a more formal version, an easier to follow version of the blog. Now this is conflicting slightly with the content of the British Dupuytren's Society but I feel it still has a place in the world wide web as many people looking for Ledderhose may not click onto a site that is talking about Dupuytren's and so perhaps this site could basically be focused on the treatments for Ledderhose and then the other content such as the details on risk factors and everything which is largely based on Dupuytren's information can go on the BDS site and would be linked to from the new site.

Overall I am thrilled with how this treatment has gone, Dr Shaffer spoke to me about a conference he went to where there were lots of Surgeons that do work on the hand and Dupuytren's and very few of them knew about radiotherapy, quite frankly this is crazy and I think that one of the first things that needs to be done, as I am sure everyone is aware, is not the education of the patients of the media but the medical professionals, this option is for most people surely a far far better options that getting bits cut out. I have spoken to many unhappy surgery patients but I have to really stretch my mind to think of a happy one whilst the complete opposite is true for radiotherapy but when I went to see the NHS specialists for these conditions not once was the option of radiotherapy mentioned and all I was told was to hold out for as long as possible before having surgery.    

So my  goal now is to write a few letters to various NHS people to see what their explanation is, is money really an issue for a condition which has so few patients and if that is the case why the ignorance on the part of the specialists about the treatment which should at least be discussed with the patients. At least from my own selfish point of view if I can’t convince them and it does return, should I still be with the same company, which is my intention, then I have private medical cover so will not have to worry about the expense and I will now where to turn to get the treatment. 

Improvement seen

So as today  I started my second week of radiotherapy and at the start I saw Dr Shaffer again. I told him how I was in less pain when at rest and although it still hurt when walking I though that the lump was getting smaller. He had a look and found it much harder to find the lump compared to last time and said that it was much less prominent and he was sure just from feeling it that it was smaller. 

He then used the outline that they had used last time and from that confirmed that it was indeed smaller based on the fact that he would have had to have been far too generous to have used the margins he did last time. This is of course great news as it means there is something changing and hopefully this will lead to normal foot functionality again. 

He did say again that he does notice that there is often not any improvement until about 7 weeks after the first treatment but that a lot of people will come back for their second week and say that last week they saw an improvement. But this is a slow process and hopefully although it might be another 7 weeks I might again see an improvement over the coming weeks and into the future. 

I then went and had my treatment as usual and it was quick and easy and I was on my way out and just have the rest of the week to go before having a final consultation with him in about 3 months time.  Maybe this weekend I will try and take a picture and put it side by side with the picture I took just before radiotherapy. 

Radiotherapy for my plantar fibroma starts again next week

The Radiotherapy:

Dr Shaffer

So the time has come for the second week of my radiotherapy to start, well on Monday it does anyway. I was told by Dr Shaffer (who I have since interviewed) last time that I may expect to see some improvement before my next visit and I have certainly seen some changes. 

• Tanned area where radiation was performed. 

• Decrease in pain when at rest which means very few shooting pains when laying in bed etc. 

• I also think that there may be some decreased size in the lump but I am not yet noticing any decrease in pain when I am standing or walking. 

Picture of tanned mark on foot, see the circle on the left. 

Overall I am much less apprehensive about going for the radiotherapy this time. I have after all been there before and I now know my way round and know what to expect. I am not looking forward to the travelling which is going to be complicated by the presence of the Olympic torch in my area on the Tuesday and in Guildford on the Friday. Traffic could be a nightmare but I am hope to get a few pictures of the torch at some point to post on here. 

The plan for next week at the moment involves me staying with some family (thank you) on the Sunday night as I have an early appointment again to kick things off on the Monday and then I am travelling up with my wife or by train on the other days for appointments at 11am. 

The changes:

Foot ready for RT. Circle should line up with tan shown above

Of course a lot has happened in the time between the last week and this week, I have now changed careers and have a fully seated job to look forward to and hopefully this will further help recovery. To be honest I think that the change is going to benefit me in the long run whether my foot gets better or not as the conditions of employment at the new place are much better then when I was doing the PhD. I tried the bus trip to work and it only took 40 minutes which is a nice length of time to read a book but not so long that I will get bored out of my mind. 

I am looking forward to the challenge for starting a new job and getting my teeth stuck into learn a whole new load of skills that will hopefully help me progress in a new career and should lead in the long run to much better job security, better money, better hours and hopefully a better me. 

And it goes on: 

On another note it is a struggle to find too much to post about on here, I think I have probably mentioned this before. I now have so many useful posts and I don't want to detract away from that by posting anything too useless, I would still like to contact a surgeon who does work on Ledderhose in order to interview them like Dr Shaffer above and like I have done for Dr Elliot Sorene and Dr Terry Spilken but all attempts so far have been unsuccessful. I would also like to know if there are any videos that people would like me to do to try and help different aspects of these diseases, whether it is a kind of treatment like radiotherapy or if it is something like the risk factors one I did then just send me an e-mail and I will do my best to make it. 

My thoughts on being Radioactive man for the week and a ramble:

So I am now at the end of my week off from work for my radiotherapy treatment for Ledderhose disease in my left foot and I am already feeling a bit down about having to go back to work. This is not because I have to go back as I enjoy a lot of the work and I find it interesting but I know that as soon as I start working again my foot is going to kick off. I know that because on the occasions this week when I have had to walk my foot has still hurt but I am of course hoping that perhaps over the coming weeks my job will become less of a problem and more fun again as my foot hopefully heals.

I have now had my entire week course and although I was not expecting anything to happen immediately it is still sort of an anti-climax, even more so when you have people asking you if your treatment is work and you sort of have to shrug your shoulders and say “I don’t know”.

This week has been pleasant and has shown me just how great the gap between private health care and NHS health care can be and I can say that I feel like I have been treated badly over my Ledderhose over the last 2 ½ years on the NHS. They have been slow, they sent me for physio just to be told they can’t help, they discharged me 1 month after I had a steroid injection and had said it had helped a bit when everyone knows it is only temporary and I then had to wait ages for another appointment. One of the people I saw, probably all actually, of the NHS foot specialists knew less about this disease than me. Ok so they have to look at more than one problem but knowing that I am coming in and apparently dealing with several cases a month of this, you would think that they would know their stuff better than someone who blogs on it. Another thing that happened today which annoyed me. I was in the little cafe waiting for my wife to pick me up and whilst waiting this little old little was calling out "excuse me" and the waiters ignored her, the doctors and nurses ignored her, it was clear what she wanted, I hobbled over and she said "oh thank you, you saw me struggling did you?" I said yes and then opened her bottle of water. That was all she wanted and 20 or so people who aren't using a stick to walk around and that weren't 20 metres away could have done it, several people walked straight past her and why didn't they do it? Who knows? 

Anyway I digress what does that matter as this week has been great, in fact the whole experience with Dr Shaffer has been fantastic and I just hope that in the coming months I see some improvement and even if I don’t I would not blame Dr Shaffer or the team at the Royal Surrey Hospital who have all been fantastic from the start, thank you.

I would love to meet up with some more people who have Ledderhose in the UK, ideally down south of London, Brighton way which is near where I live. I have never met another Ledderhose patient, well with the exception of the lady this week who has Dupuytren’s and is developing Ledderhose. It would be nice to meet another patient who is or has been at a similar level to me and compare notes, everyone always says that this thing is different in different people and I just wish there was more that I could do for the Dupuytren’s and Ledderhose community.

Right well this post is turning out to be much more disjointed than I would have liked but it is my blog so hey. I must say that if you decide to have radiotherapy with Dr Shaffer and you live more than a 2 hour commute away then try and stay in the Travel Lodge or something (though it was the worst Travel Lodge I have ever stayed in so maybe try the Holiday Inn if you can afford it). I am on the last day of this week and I am exhausted, you would think that sitting on a bus, train, at a platform, train again and then a taxi would be easy after all you are just sitting there. I don’t know if it is because my appointment have been at 10am so I have had to get up at 7am to leave 7:30am so my body is waking me up at about 5am every morning going “don’t be late, can’t be late” and I think I am going to make sure they give me later appointments next time. Equally it could just be all the travelling. For those not in the UK we are having a “heat wave” which for those that don’t live in the UK this means anything above 20^oC and sitting on all of those methods of transport with their large glass windows is not that great in that heat. Then again maybe it could be the fact that I am getting whacked with radiation on a daily basis and that is not exactly that much fun so what can you do about it other than hope that it is going to work?

As I have said before the actual process of having the radiotherapy has been wonderful and sitting among cancer patients you realise just how lucky you are to just have a lump in your foot. One thing that I do feel unlucky about is my age. All week I don’t think I have seen anyone under 40, a couple under 50 and most are over 70 years old and I am just 25. I can’t be feeling sorry for myself, as I just said most people in the centre have cancer but at the same time I wonder, why have I got this disease at such a young age? Not the youngest I have heard of but much below the average for this and Dupuytren’s.

So how is my foot feeling? Well as I have already alluded to it doesn’t really feel any better. Earlier on in the week I thought the lump might be getting smaller but I think that was in part hope and in part me being off of my feet so much that any increase in size that could be caused by inflammation or whatever was not present. Fingers crossed that I see some change in the coming weeks but I doubt that I will be back on the badminton courts any time soon. Certainly rubbing the E45 in hurts. 

In fact this week, in particular towards the end of this week my foot has had a kind of dull ache. Not the same kind of pain that I had before treatment but something else, anyone else had this kind of thing after radiotherapy for these diseases?

I will of course keep everyone updated of my progress and in all likelihood will be back here early next week to complain about being back on my feet again.

Thank you to everyone who has supported me this week. I don’t just mean the Dr and staff at the hospital but also to the friends and family that have been sending me nice texts or giving me a lift or whatever. The texts to keep my company on the 5 hours of public transport that I was enduring were very much appreciated.  

J