When Ledderhose becomes life-threatening

You go on the internet today and search for Ledderhose or plantar fibroma and you will come across a lot of different websites, mine and the Dupuytren's Societies included but you will also come across a lot of websites that say this condition is not even painful. 

Dupuytren's and Ledderhose are not life-threatening conditions but they are quality of life-threatening. Sure this condition is never going to cause your heart to stop beating or your brain to have memory loss but does that mean that this condition is not life threatening? What about the mental side of things. 

This post is sparked by a recent conversation I had with a lovely lady from the UK. She contacted me through the blog e-mail a few weeks ago and I replied straight away saying that there is hope and there are still things to try. Over these weeks we have been trying to arrange a time to have a phone call, some patients prefer to chat that way and it is certainly easier than e-mails once you actually get on the phone. Anyway we finally got round to talking last night and one of the first things she said is thank you so much for taking my call and thank you so much for replying to my e-mail, you literally saved my life. 

We then talked for around 30 minutes, me sharing my knowledge and experience and talking through the different results from the patient survey and how they related to her experience. She went through what is happening to her now and how the condition is causing her to have suicidal moments, times when you can't see a way through. I am lucky I never got to that point myself but you know what I could certainly see where she was coming from and this can be hard for people who have not experienced anything like this to understand. 

Imagine that you are an active person, you enjoy being out and about and going for walks and suddenly there is a pain in your foot. Over the next weeks or months, perhaps even years the pain in your foot builds to the point you can't really walk. Doctors tell you that there isn't anything they can really do, the pain may get better by itself over time, no guarantee though. The only option freely available to you is surgery, it is a tumour after all but no the doctor (rightly so) says that it is not a great option and only recommends cutting it out as a final resort, you are thinking I can't walk when does that option really become available. You ask around and nobody else you know has even heard of the condition let alone gone through something like it, the condition is ultimately rare (at least in such as painful state) and you struggle to connect with others in your position, limited research is being done and all you can see ahead of you is years of pain and misery. You start taking pain killers, you try everything and although nothing really works things like codeine at least give you some sleep, a rest from the night twinges of pain that have you waking up with a jolt. Drugs like codeine are strong, you aren't supposed to be on them for long but coming off of them seems like a nightmare, you have to go through constant pain again and you find yourself thinking can I keep going. 

I am lucky to have had so many friends and family around me, willing me on and being there fore me night and day, we now have the amazing internet and facebook with groups and forums of other patients who are not only there to share their experiences but also to give you hope, support and commiserate with you and let you know you are not alone. These groups are so important that I am not even going to try and describe how important they are, I congratulate everyone that participates in these in any way shape or form. Patients on these groups might share with you their experience, like me of going from walking to stick to running and you think that could be me. The treatment you want costs thousands of pounds, at least it is not ten's of thousands. Everyone out there needs to realise that there is more than the actual impact on your body there is the mental impact as well. If your feet are bad it can really take your life away, you can't so so many things that you could do before, as I said above sometimes you can't even sleep without pain. 

Here is to hoping that one day we will have a cure and if not then hopefully we at least have patients being aware of and having access to all the different treatment options that might help them and with support so that they never feel the need to have suicidal thoughts. In fact both my wife and I are going to run the Brighton Half Marathon next year and we are going to run it for http://www.mind.org.uk/ 

Some things matter, things like approaching 200,000 page views, nearly 400 facebook likes, travelling to Groningen to present at the Symposium although nice do not matter, what matters is connecting with the patients that really need a helpful word from someone who has been there. I know the blog has helped hundreds, if not thousands of people but now I know it has actually saved someone's life, I cannot express how amazing this is and I know how hard it must have been for the patient to share that information with me..

Memories of my Nan

The thing that I love about the blog is that ultimately it is a personal thing and I can do with it as I wish. Here I almost always talk about relevant things. Ledderhose is a major part of my life and has been for years and I love helping people around the world to tackle this condition but one thing that is a hurdle for funding and research is that this condition is not life threatening and sometimes it is clear to see why that is so important. My blog would never have gotten off of the ground without the help and support of my family and friends and I have the sad news that someone that I know who read the blog a lot has passed away due to cancer.

This post is coming very soon after my Nan passing away and I hope nobody finds that disrespectful, we have known for weeks and I wanted to post this whilst it was all fresh in my mind and doing it felt like it had meaning and was a way of dealing with the emotions going through my head.

The Cancer:

Back in early September my wife and I had my Nan and her Husband over for cards, we had a lovely evening and it was great to see them getting on so well with my daughter (who absolutely loved the owl necklace my Nan was wearing "twit-twoo"). My Nan mentioned that night that she was feeling unwell and that she was booked in for some tests. Unfortunately before September had finished my Nan took a turn for the worse and had to be taken to hospital where tests and scans showed she had stage 4 pancreatic cancer, the cancer had spread to her liver. My Nan coped with the news really well and was brave and courageous in her battle to the end. 

Obviously cancer is never a good thing, I have been involved in cancer research and I have known several people who have had it but up until now I have never had anyone close to me die. I have been incredibly lucky and I am trying to look at it from this perspective - I have got to know all my grandparents, not just as a child but I have got to know them as a grown up and they have all met my daughter, their great-granddaughter.

My Nan was given medication to control the pain but really there was nothing that could be done. At her age there was every chance that the harsh treatments used would only make things worse. By the middle of October we were told that we were probably looking at a few months if we were lucky but that it could be as little as a few weeks. Her health had deteriorated and she was showing signs of jaundice, it is really not easy seeing someone you care about going through this and knowing you are helpless. As quick as a week later we were told it could be days and to not expect things to last beyond the next week. I called her up shortly after receiving this news basically to say that I loved her and goodbye, this was without a doubt the hardest phone call I have ever had to make but it was great to talk to her. She did not sound herself and was no longer able to walk or do the things she loved although she was in a hospice with great care.

Sadly yesterday, not even the end of October, she passed away at 5:30pm, with her husband, son and daughter (my Mum) at her side. In a way it was good that she didn't have to suffer for too long but at the same time, from a selfish point of view, it would have been nice to have longer to get used to the idea and to have seen her a few more times. The cancer was very aggressive and the deterioration was very quick.

A gummy snake like my Nan used to buy me.

The memories:
I have chosen to look back at some of the memories I have and show how often she was there with us. 

I have many memories from my childhood involving my Nan. She used to come over during the summer holidays to look after me, my brother and sister, we would always meet her in town and she would often take us in Woolworths. We were allowed to get a few sweets and I would always go for the giant jelly marshmallow snakes and if I am honest I still have a taste for them to this day even if it because of the memories as much as my sweet tooth. In fact today I went to out and got one of these for me and one for my daughter (pictured on the left) and I still enjoy them :-)

I remember going to stay with my Nan and step-Grandad at their house near the sea, listening to old sixties music with them (can't remember why but why not) and generally having a good time. They would always save up their change so that we could go down to the pier and have a go on all the little games, trying to win more money but always losing their pennies, these are times I shall always cherish. Moving on a little bit when my brother, sister and I did well with our GCSE results they treated us to different things to match who we are. I ended up on a weekend away which included my first and currently only Premiership football game, I still have many vivid memories of that day and the lengths they went to ensuring I had a good time. 

Growing up I have continued to have my family around me, I remember my Nan being with us at many important events and us being at her important events. I remember going to her wedding, going to many milestone birthdays and probably getting looks because I was in shorts even though it was a smart place and it was the middle of winter. My Nan was always well presented and you are unlikely to find a house as well kept and clean as hers.

A few years ago now, probably more like 13 or so in fact my Mum, Dad, brother, sister and I all went on holiday together with Nan and Richard to Portugal. We all stayed in a really nice Villa and although I can't remember exact details I do remember having a great holiday. I remember their bedroom got invaded by ants and someone driving along too fast on the back roads and playing loads of games and having lots of fun.

For some of my best memories though I was actually in a suit. We were all together for my brothers wedding. My Nan was with me in 2009 when I graduated from Uni, it was a really nice day and I really appreciated everyone going to the effort to come and how proud my Nan was, I specifically recall her telling me how she had told her hair dressers that she was off to my graduation and that she was looking forward to it. 

I remember the family all being together at my wife and I's Wedding day which still ranks as the best of my life, being there with everyone you love is amazing and it has been so great to celebrate so many great occasions. although a shame that it is now not possible for everyone to be there. The most recent event has been more of a journey, family is important to me and I know they can't be here forever so although really busy we have tried our best to ensure that we spend time with everyone so that they get to know our daughter. We have had a welcome to the world party, her first Christmas and a first Birthday party and my Nan has been at all of these. We have had Nan and Richard over to play cards many times and they were good times spent have fun. I just wish I had a few more pictures of Amelia with Nan and this is certainly something I plan on addressing in the future with everyone else!

As a family we are looking to do a run or walk next year for Pancreatic Cancer UK this will give us something positive to focus our emotions on as Nan will be missed.

It is hard to think that I will not be seeing her again, although not feeling great she was here playing cards only 8 weeks ago if that!!! To me Nan has always been kind, caring, helpful and willing to listen even if she was not always the most punctual. Almost every time I saw my Nan since I started the blog she has told me how proud she is of the blog and how many people it helps so I felt it only fitting that I write about how proud I am of her and how she dealt with the cancer on this blog.

I know that things in life change and this year at Christmas there will definitely be something missing but we will make sure that we try to enjoy the day in the same way as we would when she was here. Reliving old memories puts a smile on my face but thinking of all the future memories that are going to be missed is much harder to think about...

Thank you for the memories you really will be missed.

Good bye Nan.

I wanted to use a happy picture with everyone waving and this is the one that I found.

A bit about me and things

An update on me is probably overdue. Things have been hectic recently which is great. 

As you will have seen over the past month or so I have been hearing about a few new and alternative therapies in Laser treatment and shockwaves. I am always keen to hear about new treatments and although the above 2 are yet to have much evidence for them they are still worth considering. After all every treatment has to start somewhere or it does now, imagine if surgery had never been done for Ledderhose and they conducted a clinical trial on that now.... anyone think it would actually be approved? 

The above 2 interviews both results in long and helpful discussions with the people involved, it is nice to hear how passionate some people are about these things. Sure the shockwaves guy was a salesman but it sounded like he really believed in the product he was selling. It would be nice to be able to try to use the equipment, I have achilles problems after running and knee pain after badminton and it would be great if there was something that could alleviate them (weight loss would but that is a long term goal). What I have just said shows that at least I am still playing badminton and running, this time 2 years ago I was 3 months post RT and starting to improve. Soon I will be adding a post on the progression of Ledderhose based on the mini-survey I am doing and although I do not have many responses it is only going to be an overview, probably just showing that everyone is different. 

Soon I will also be doing my 300th post, this will be a post to celebrate everything that has gone before, passing 150,000 page views and maybe wondering where the future will take me.

The facebook group continues to go from strength to strength and it is exciting to see so many people coming together to share and talk about experiences. The survey results are continuing to come in and we can already see some interesting trends. 

I have entered the blog into the UK blog awards, whether it will go anywhere I don't know but if it results in 1 person gaining some knowledge on the condition then it was worth entering. I am not sure if my blog is award worthy in terms of layout etc but I am hoping that the sheer amount of unique content and the number of people it has helped give it a chance of doing something. 

I have also had some sad family news recently, it is fair to say that I don't feel that Ledderhose and Dupuytren's get their share of the limelight but then they aren't life threatening even if they can make your life really suck. Being told you have Ledderhose or Dupuytren's is much more of an "Oh" thing rather than many other conditions where you are left speechless and in that sense I can fully understand the amount of research and money that goes into preventing and curing other conditions. Hopefully they can hurry up and cure those and then crack on with these conditions! 

There is so much going on in life that finding time for the blog and related matters is not always easy. What with working a full-time job, spending time with my amazing daughter and wife, helping my wife in setting up her new business (please feel free to like her Facebook page and if you are in SE England then order some cakes, they are really yummy just look at my waistline), doing some badminton coaching and much more time is very precious. Thank you to everyone that helps in anyway, whether it be with a nice comments, helping someone or answering their question on the Facebook group so I don't have to or whatever, thank you. 

Experience of Radiotherapy in Germany from the UK

After a great deal of research and visits to GPs I found Gary’s blog and the IDS website and Forum. I have ledderhose in both feet my father also had it and DD, but it never progressed. I chose after many many hours research on RT. Costs in the UK were estimated around £6k for two feet. Germany was £2k for two feet. I had read about Prof S in Hamburg and chose that as my route.

Firstly I emailed him. Great emails and he was responsive (after a wait as he was on holiday!) I sent pictures asked lots of questions and decided on a one day visit for a consultation. Being from the UK I thought this was sensible (although a long day) after reading some people saying not everyone gets treated. A flight was around £75 return from London to Hamburg, travel on the day just 6euro. A great meeting and he advised treatment would be suitable and the beginning of DD was starting in both hands, but advised to do nothing with them not worth treatment just yet.

My trip to Germany was booked shortly after, treatment required 5 working days. I booked in a school holiday so paid the price on flights but I wanted it done ASAP hopefully while the active stage was in progress. Flights from London this time were £160 (double normal) return. As I was keeping this to a treatment not holiday I wanted to be able to cook myself etc. I found an apartment in Niendorf (about 25 minutes train from the centre) this worked out at 360euro for 5 nights. I had a spacious apartment/room with a Bed living area and kitchen all in one, sounds a squash but was very spacious and well worth the money if you are happy with no service, ie no cleaning\bar\reception or shower gels etc. It was perfect for me. It was a very local area English wasn’t widely spoken but most had an understanding and I got by fine (I don’t speak any German).

My First day in the hospital in Hamburg was a little worrying. I got the trains and buses. Bus 292 at stop Foorthkamp stops just metres away from the clinic and the buses trains etc are so efficient, easy also such good value, I paid just 26 euro for a week’s pass any time within greater Hamburg.

When I arrived the girls on reception were very smiley and friendly and spoke Basic English, enough to get by. I was told Prof S was not in that day, I had an appointment booked but he couldn’t be in the clinic. I panicked a little and got worried that I had come all this way and thought he needed to be there for treatment etc. I asked the girls how they will know where to radiate etc as I thought the Prof had to do this. They couldn’t quite understand what i was asking but we got by.

I was then led to a waiting room and then taken to the stairs and told to go down where I can have treatment. This goes down to the (very hi tech looking) Lab. The oncologists there spoke good English. I asked if they knew what to do without the Prof, and he assured me that yes the Prof had left instructions and everything is photo based and the template etc was set. This made me feel a lot better. He really seemed to know what he was doing.

The treatment itself was simple, hop up on the bed and lie face down, position your feet on the rest, they move the bed and the machine electronically to line everything up. I couldn’t really see much as I was facing away and so couldn’t really see all of what was happening. He quickly felt for the lumps, although he had the picture on the screen of the machine, placed a shield over the foot with a template to allow the radiation through to the area of around 12cm. They tell you the radiation will begin, leave the room, a red light goes on, machine beeps and I counted 30 seconds then they rush back in and set up the next foot and repeat, pop your shoes on and you leave! It took literally 3-5 minutes. I felt nothing.

I did worry to begin with about the area to radiate etc but I think Prof S and his team are very experienced and work well together so know what they are doing. The next day I had my meeting and we spoke about everything. I questioned the area of radiation etc and as the previous man said he explained all was done now in a template form for each patient. All was good and I was so happy to speak to someone with such knowledge, in fact it was the first (and only so far) person I have spoken to face to face that knew more than I did about Ledderhose. Such a relief! The Prof is very knowledgeable and friendly and makes you feel at ease.

Treatment was repeated as above for another 4 days, Thursday i had a consultation to discuss everything and how the whole thing has gone, I was then handed all my notes and a letter about treatment received. Sheets were included to make notes on any further nodules on hands and feet.

It’s been just weeks after my first visit so I have no results to show or speak of. In fact currently my nodules are a little more painful and sensitive, this as I can see from the forum is quite normal and I hope it to die down in a couple weeks.

Overall I’m really glad I went to Hamburg, the hospital felt very equipped and modern, I have nothing to compare this too of course but I got a feeling they put a lot of time and money into the place. Technology seemed advanced, such as when you walk into the radiation room there is a big screen that pops up with your picture so it’s the right patient and then the two screens on the large radiation machine pop up with all your details and pictures of the feet, radiated area etc. I left and felt happy with my experience it didn’t really even feel like I was in hospital, everyone was so friendly the prof the team that treated me and even the girls on reception grew to recognise you and were so happy/polite etc.

Hopefully I will report back and in a few months and have some results to speak off.

Finally if anyone is interested the cost for all consultations via email and face to face and all treatment for the whole week was broken down for me and after the rate exchange it came on the credit card as £820, a lot better than I thought! This should be less next time as the initial “treatment plan” and some consultations won’t be needed.

For me the locations in UK I would still need to either drive 4 hours return trip or stay in a hotel so costs would have been a lot more. I must point out there are locations at a slightly cheaper rate but further from me. Also had it only been one foot/hand may have not been too bad to be treated in the UK

Interview with a UK based Dupuytren's and Ledderhose patient

The following interview is with a Dupuytren's and Ledderhose patient from the UK. He has had surgery, more information can be found here. 

1) Do you have Ledderhose disease, Dupuytren’s disease or both?   

Both. Dupuytren's of my left hand was diagnosed in 2004 at Addenbrooks Hospital, Cambridge. It was causing a lot of pain as it bent up and nodule appeared on the palmar fascia. I didn't really know what it was at first. No surgery was recommended, and it has only slightly deteriorated over the last 10 years. The pain is intermittent, but bad when I catch it on something! I have very limited mobility in my little finger and can’t straighten it. The nodule is clearly visible.

My plantar fibromatosis was diagnosed in early 2009 by Mr Phillip Milsom in Colchester, Essex. He operated on my left foot (the worst of my two feet) in June 2009.

2) Do you have a family history of the disease or have any increased risk from other risk factors such as excessive alcohol consumption, smoking, diabetes etc?

My father had both hands operated on for his Dupytren's at different times; it reduced pain but increased mobility was very short lived. At a family party, I also noticed my great aunt had it in one hand. I don’t excessively consume alcohol, nor smoke. My paternal grandmother was diabetic.

3) How long had you had Ledderhose before considering Surgery? And what other treatments had you received / were you offered by medical professionals?

My GP nearly tried to lance the nodules on my foot! He believed it to be a ganglion cyst, however, thankfully he referred me to the specialist Mr Milsom. This was in early 2009 when I had chronic pain from my foot and it was starting to affect my work and sporting activities. Despite the the risks associated with surgery, he recommended this as the best plan of action. It was unusual to have Ledderhose at my age, I was 26 at the time.

4) Before Surgery were you made aware of the rate of reappearance after traditional surgery and did this concern you?

Yes, but I needed to do something. I am a teacher and I was having to take my shoes off and teach barefoot as the pain was so great. After playing hockey on a Saturday, I had to rest for most of Sunday.

I was warned that that success rate was variable and that they could easily come back, with more or less pain. It was obviously a major concern, but I was willing to try it.

5) Were you at the stage where you couldn't walk before you had surgery / what sort of pain were you in?

Obviously I was not totally incapacitated but the pain was regular and at times severe. When I woke up in the morning, it was often bad. I had a burning sensation or a dull ache. Walking on uneven surfaces was particularly difficult, the beach was the worst! I had to stop wearing several pairs of shoes as they were just impossible to wear without huge amounts of pain.

6) What kind of surgery did you have and how long did it take?  

A large part of the plantar fascia was removed including the section where the nodules were. This operation was carried out by the consultant himself at Colchester General Hospital, Essex.

I was under local anaesthetic, I had several injections in my foot before being taken into surgery. My foot was elevated and a screen placed across my torso so I couldn't see down to my feet. It was a very odd sensation, it felt like someone was drawing on the base of my foot with a biro pen.

The operation lasted about an hour. After which I was allowed to go home.

7) How did the treatment go? How long did the treatment take and what was recovery time like?

The operation was a success. However the recovery time was long. I had the operation on the 1st June and I was on the sofa for June, July and most of August. I returned to work on the 1st September.

Friends and family were good to me and took me out, however I can see how depression can kick in. I was taking a large dose of painkillers to begin with, but they left me constipated, and so I had to reduce those. I found it impossible to get comfortable and I slept a lot.

8) How long ago was the Surgery treatment? Have the lumps grown back? If yes how long did they take to grow back and are they worse now?

The surgery was 5 years ago (2009), and the nodules reappeared about 2 years after surgery. I actually now have more and bigger nodules, however they are less painful than before. I regard that as a partial success.

However, as I am only 30 now, I do worry that the pain will return to the level it was previously. I still get the burning pain and the dull aches, and after sport it can be very painful. I elevate it when this occurs.

9) Would you say that the surgery was worth it? And would you recommend it to people that have Ledderhose? Would you consider having it again?

For pain relief, yes it was certainly a success. However I do have reservations about it being labelled a cure. Perhaps it is for some people, but obviously mine are now bigger than they were previously!

Since discovering this blog, I am in the process of considering my next step. I am looking at alternative treatments as I do worry that this is only going to get worse. I love to play hockey, and to run; I have managed two half marathons with my Ledderhose.  

10) What would you say your standard of walking is at the current time and do you think this would be different had you chosen not to have Surgery?

I would definitely say things are better, and perhaps its current state is the best it ever will be. I think I have come to the realisation that this may be something I need to cope with for the remainder of my life. There are worse discomforts in life, and it is certainly not debilitating. It is an inconvenience though, and I do very much worry that it may get worse at some point in the future.

11)  What treatments have you tried since surgery?

None to date.

12)  What treatment options are you considering now?

I plan to visit my GP in the area where I now live and start the process from scratch to see what is offer in my new area (Upminster, Essex) on the NHS. However I realise that I may need to seek private treatment either here or in the US. If something closer to a cure is available, the cost will be insignificant compared to the freedom it would offer.

That is the end of my interview with Andy Lewis. He has given some great answers and it is interesting to hear that at the moment his surgery is sort of successful as he isn't suffering from the same degree of pain as he was before. It will be interesting to know what treatment he is offered and what treatment option he goes for. There are certainly still some available whether it be Radiotherapy, Cryosurgery or an enzyme injection.

Cryo for Ledderhose in the UK

I have long been seeking a definitive answer as to whether the procedure to freeze a plantar fibroma nodule (aka cryotherapy or cryosurgery) is available in the UK. Last week I received an e-mail from a clinic which performs the procedure, therefore answering my question; yes cryo is available in the UK.

They have not been performing it long but I have opened a line of communication with them and they seem happy to answer my questions. I have asked them a few questions which I am waiting to hear back about.

However I was sent an information leaflet which gave me some more details which I have outlined below:

• The total time required is around 40 minutes
• The treatment should not occur within 6 weeks of having a steroid injection (an alternative treatment for Ledderhose)
• The total cost of treatment is around £1400 for a single fibroma, including consultation, £2000 for 2 fibroma's when they are treated at the same time. 
• A local anaesthetic is first applied to the target area
• A probe, cooled to -55 Celsius is then guided using ultrasound to the target. In total the area will be cooled for 6 minutes which is broken down into 2 lots of 3 minutes.
• A steroid will then be applied to the area to reduce inflammation.
• The goal is to cause shrinkage in the fibroma and a decrease in pain.
• “If your condition was caused by certain repetitive foot movements such as running or dancing then there is a risk the condition may return if the foot is exposed to these factors.”
• The treatment may not work and the condition could still develop and more fibromas could appear. In the leaflet it states that the worst case scenario is the surgical removal of the entire plantar fascia. The article does not however cover that you may wish to try radiotherapy. I am currently researching to find out whether the 2 can be performed one after the other.
• The leaflet also states that the condition may increase in soreness for 3-4 weeks before then seeing a steady decrease in pain for around 6 weeks and will ideally see complete pain relief by weeks 12-14.

I am unable to see any statistics on how frequently the treatment works or how long it is expected to last for, also questions I have asked.

Stay tuned to updates to this post and hopefully more information becoming available for Cryo in the UK. If you are a UK patient and you have had this treatment then please let me know as I would really like to speak to some patients who have had Cryo. 

Interview with Ron McColloch, Podiatrist at London Podiatry Center

Today I have an interview with Ron McCulloch. See below for the interview and details. I actually got in touch with Ron because his centre treats Ledderhose but it also uses Cryotherapy. He has not yet used cryo to treat plantar fibroma's but has not ruled out used it for this purpose in the future.

 Bio: 

Ron McCulloch is the principal Podiatric Surgeon and Director of the London Podiatry Centre. During his many years as a specialist Podiatric Surgeon, he has performed thousands of successful foot operations.

Ron McCulloch is Consultant Podiatric Surgeon at London's Homerton University Hospital.He lectures extensively both on the national and international circuit and helped to develop podiatry in the Middle East.

Ron McCulloch built a state of the art gait laboratory at The London Podiatry Centre. This is one of the most advanced dedicated podiatric gait facilities in the world. He is a published author on surgical techniques and is one of only two practitioners in Great Britain to offer invasive cryosurgery of the foot. 

This information was taken, with Permission from http://www.londonpodiatry.com/podiatry/staff/

1)    How long having you been treating Dupuytren's and Ledderhose disease?  

About 20 years

2)    Roughly how many Dupuytren's patients have you treated and how many Ledderhose patients have you treated?

 Plantar fibroma formation varies from discreet nodules to multiple lesions. (Of course you know this).  I have probably treated several hundred of these over my career. They are not uncommon.  I cannot recall exactly how many I have operated on probably around 20 or 30

 3)    What treatments have you used for these conditions? Would you recommend the treatment and roughly how successful is the treatment for each condition?

 Conservative care/redistributive orthoses. Injection therapy, mainly steroid. Surgery to excise the lesions. As you know I'm now looking at providing cryosurgery as cases now come along.

 4)    What would your recommendations be to Dupuytren's and Ledderhose patients and do you have any advice you would like to give?

 Always start with conservative care. If this fails injection therapy which involves breaking the fibroma down with a needle and then infiltrating the steroid. After this I would be inclined to try cryosurgery and full wide excision if this fails.

 5)    What do you think of other treatments such as steroid injections, Xiapex, Radiotherapy and cryosurgery (which I see you do for other conditions)? 

 I only have experience with injections and excision.  The key thing with excision is to do a large marginal one to minimise the chance of recurrence.

 6)    What success have you had with cryosurgery for other conditions? 

 I have done almost 100 operations with cryosurgery but these have mainly been for the management of neuroma formation. As of now I have not had to treat   fibroma using cryosurgery as this is a fairly new treatment in our facility. However when the right case comes along I'm sure we will be using this as part of our armoury to treat plantar fibroma formation.

Interview with Mr Stephen Bendall, UK Orthopaedic specialist

Today I have an interview with a specialist that I have seen. For me he was an NHS specialist that led the team that tried to help through orthotics and non-invasive measures as, as he states here, surgery is not a great option. See the interview below for a Dr that uses surgery as the last resort to treat Ledderhose disease. 

  

Mr Bendall completed his undergraduate training at Charing Cross Hospital Medical School followed by orthopaedic training on the Charing Cross and St George's rotations. He gained his Fellowship at the University of Maryland and John Hopkins, Baltimore, USA.

He was appointed as a Consultant in 1997 at the Princess Royal Hospital. Mr Bendall's interests include all aspects of foot and ankle surgery and he is also involved in training and research and has recently become an examiner for the FRCS Orth exminations. He is currently the chair to the BOFAS Education Committee and is Chair of the BOFAS MIS Group. Mr Bendall has published a wide range of papers, in particular in relation to ankle and forefoot surgery.

Information and picture above was reproduced with permission from here

1) How long having you been treating Plantar Fibromas?

 I have been treating this condition for fifteen years. 

2) Roughly how many plantar fibroma patients have you treated? And what percentage goes on to need surgery?

I am afraid I have lost count of how many patients I have seen but I would generally see one a month or so. I treat a tiny proportion; my guess would be 30 to 40 cases.

3) How common do you think Dupuytren's and Ledderhose respectively are in the UK? They are supposedly more common in males then females and have been linked to a family history of the conditions, smoking, alcohol consumption and diabetes are these risk factors you see in your patients?

I am not sure of the frequency of this condition within the UK but I agree with your observation that this is more common in men, there are various things that are supposed to be associated with the condition and one sees these risk factors to a varying degree in some but not all patients.

4) When treating plantar fibroma patients what would your order of treatments be? E.g. Steroid injections, orthotics, then surgery?

Regarding how you manage this condition, most patients in fact have little or no symptoms, they are just simply worried about the lump. 

 You are correct that one obviously goes up a ladder of care starting with non-surgical treatment before looking at surgery.

 I am very wary of intervening in an invasive way, either with a steroid injection or with surgery for this condition because it is rare for patients being unable to tolerate the presence of the lumps. It is when one intervenes by doing something physical to the lumps that problems arise.

5) I seem to remember you were not a fan of steroid injections for Plantar Fibromas, why is this?

There is no specific evidence that I am aware of that steroid injection helps or improves this condition

6) In what condition would a patient need to be before you recommend surgery?

Patients usually come to surgery because the lump is intolerable to them or it is very painful. 

7) What is the procedure for surgery? What are the side effects, recovery time and overall success rate in terms of the condition coming back?

The key thing is that the incision to remove the lump is not a small one and has to encompass the whole length of the sole of the foot and one takes away not only the lump but also a margin of what seems quite normal tissue around it to try and reduce the recurrence rate. The published recurrence rate being 10 to 20%.

 In general terms the cut heals over about three weeks or so but the foot will feel sore and tender for the better part of two to three months.

The key thing is that one is interfering with a segment of the plantar fascia and that is an important structure in the foot and one might have to consider wearing orthotics on an indefinite basis after such an operation.

8) What are your thoughts on other treatments that are meant to help with the treatment of these conditions, such as radiotherapy which has been used successfully to treat plantar fibromas and delay Dupuytren's, also cryotherapy /cryosurgery and Xiapex?

I am not familiar with the other modalities of treatment that you mention, radiotherapy, cryotherapy and Xiapex. There is obviously literature with some experience of radiotherapy in Germany but I am not aware of any UK interest in this.

9) Finally any other advice that you would like to give?

Finally the text book, which is Surgery of the Foot and Ankle, is probably the most authoritative text we have on foot and ankle surgery and it quotes “attempted surgical resection is best avoided”. I think that is good advice and certainly is in my experience.

I have seen patients referred to me before who have had attempted resections and these have proved difficult to resolve.

I hope that this has been helpful for you.

With kind regards

Stephen Bendall

The thing that I found most illuminating is that he did not know that there was an interest in the UK for radiotherapy when Dr Shaffer has been treating using radiotherapy for several years and of course it is the treatment that I have had a decent result (so far) with.

I am hoping that I can get Mr Bendall to contact Dr Shaffer. He clearly thinks that surgery is not a great option and perhaps with a bit more knowledge he might think that radiotherapy has some things going for it. I understand that doctors are busy but surely it is in their patients best interests if they are able to keep up to date with all the treatment options available as there may be patients out there that have had surgery that have had it come back worse when perhaps radiotherapy would have worked. 

Other than the above comment I think it was a really good interview and I appreciate, as I do with all specialists, that he found the time to answer the questions.