New Stuff

 I can't say much at the moment but I am hoping that some new work I am collaborating on will be opening up in the new year. It should be a good chance to gathering some information on some patients and to spread the word and information about Ledderhose disease. 

It will be really interesting to see where it goes. In the mean time I am continuing to try and increase the profile of the condition. We had a good catch up with at the BDS recently and Anna has been working hard with Dr Shaffer to create some really good YouTube Content. 

I intend to post a few of these videos, the first is below and is why it might be too early for radiotherapy. 

International Dupuytren's Symposium Day 2 - Morning

....

Most recurrence will happen in the first 2 years, hopefully this means that I am past that point. They also look at patient satisfaction in terms of hand function in terms of Dupuytren’s patients, I think this is a great measure to use when treating DD patients although it does mean that you are relying on patients having similar goals and would love to see a similar study for Ledderhose. How many Ledderhose patients are happy with foot function after radiotherapy and surgery etc. For DD they did look at degree of contracture and other variables both pre and post operation to see whether there was any linkage between these and patient satisfaction which is great to be able to use as a predictor for success in surgery / PNF.

Much higher number of men were happy with their degree of function compared to women and nothing else was related (well may have been but i missed it). Not surprisingly those who had a more successful surgery with less complications were more likely to happy. Men were 2.5x more likely to be happy, this seems amazingly high and it does make me wonder about thinking more of the female side of this. Could the high numbers of men in most studies, including surgery, bias the results to be more favourable.

A fair amount of this session was on patient satisfaction and how to measure it etc, this was stuff that was not overly relevant to me, it is interesting to see that around 25% of patients do not think that the output given from their responses to surveys actually reflects how they feel about how their treatment went. Personally for me the most disappointing thing was the poor patient response rate, around half didn’t fill it out, come on patients when a doctor gives you a questionnaire fill it out you will be helping all the other patients out there by improving the results of studies.

We then moved on to looking at PNF a lot. Good for me as my Dupuytren’s knowledge is severely lacking as I am very focused on Ledderhose as this is what I have and know well so I haven’t looked at PNF. The first talk was by Gary Pess and his thoughts and tips on the use of PNF and Collagenase, this was interesting as he was someone I was chatting to for an hour or so at the dinner the evening before! Great to have made these contacts and hopefully can put them into good use in the future.

He prefers to treat early with minimally invasive options. Good to hear of a doctor that says that patients should be treated early and aggressively even if RT wasn’t mentioned. After all if treated early you are getting in there before they are losing too much function and he said that it worked better in terms of time until it comes back. Interesting to hear that, but I guess you are destroying a higher percentage of the disease tissue? I mean if you have a huge lump you will damage / remove 10% to break the cord, if you treat early you might destroy more like 50% and therefore it will take longer for the disease tissue to recover. Hopefully I can get some notes done on this to ensure that you can check your doctor knows what he is going, Gary Pess has been going this for a long time so if you are going to have Collagenase or PNF then I really recommend watching the video of this presentation as there is so much great information.

PNF in recurrence of Dupuytren’s - PNF rates can come back up to 85% of the time and the question was can it be done again and again to avoid having to have full surgery. PNF postones limited fasciotomy for around 4 ½ years and up to a fourth procedure it seems to work as well as a first procedure, but after this has reduced usefulness.

Dupuytren’s Treatment - Where are we now:

Are there too many options, they all have different merits and drawbacks and from the start radiotherapy was at least mentioned along with a few other options we had yet to hear about. It was interesting to get a brief history of Dupuytren’s and gives a good overview of it for anyone that hasn’t heard it before.

Steroids - Used in nodules but not cords

Radiotherapy - He didn’t give a good overview of this, just said radiotherapy can cause fibrosis. Just shows not looking at the data and talked about burning holes in hands as with breast cancer, the doses and treatments are different. I can just imagine the reaction that the active DART members are going to have when / if the watch this presentation on YouTube. .

NF and Collagenase - Not for super advanced condition.

Chemotherapy and Gene therapy - Didn’t go into detail

Also quoted the condition as being painless, from what I have heard about DD this is not always the case. Overall the talk was good but it was clear he was a surgeon with strong surgeon views and as I was sitting through it I was hoping that some of the RT doctors for example might be able to question him at the end.

Things then went into a bit more detail and started looking at steroid injections (they can actually be useful when used with NA/PNF) and can delay the recurrence of the condition.

There was another talk on PNF against collagenase (a very active area at the moment, probably due to the money being pumped into Xiapex) and in this case they found no real difference between the two different groups.

Comparison Xiapex with Limited fasciotomy and again there was no real conclusion.

There was a talk on the TEC technique and whilst it sounds like it could be interesting I recommend watching the presentation as the presentation was do at a very rapid pace, I think they were reading from a script and reading it quick! But the results suggest good functional results. I hope I am not being too critical of the speaker given that I will be standing in the spot later today. To be fair she finished bang on time and would have overrun had it been delivered at a slower pace, I guess less is more.

At this point I did start to struggle to keep up with the reports to some extent. I guess a combination of it nearly being lunch-time, having done a 6 mile run and thinking about my talk all played a part. Still I will do my best.

The next talk was looking at the microanatomy of the hand / finger. They are looking at some fibres that are all intertwined in the forming structures which is of course of great interest for these conditions. The idea being that these structures could form cords, I suggest if you are interested that you look up the speaker giving the conference from the notes.

Next 

What is the natural course for patients with primary DD came up next. The idea was to track patients every 6 months, nodules and cords (no mention of looking for Ledderhose??) and they have done this for 2 years at the time of the talk. Had around 250 patients with around 16% of fingers showing contracture. They found that over time the patients stayed stable in terms of the size of the nodules and cords and the angle of the fingers. The changes looked at were minimal so they did some fancy analysis that I didn't understand. Basically there were patients that were stable, increased in disease and decrease in disease and that the decrease was cancelling out the increase (I think) when looking at the numbers as an overview.

Basically they showed that in some cases the condition is not progressive. Of course this is a factor for radiotherapy as if a patient is not going to progress then you do not want to treat with RT when it is not required. A valid point and every more shows that if we can find a marker to show it is aggressive then we know to treat early and perhaps with RT (of course depends on studies etc).

Then we started to go through some recurrence papers / talks. A big problem is that you compare different papers and with DD there have been 40 different descriptions and you can vary your data to show recurrence from 2% to 86%, an extremely important report to get more consistency. After all there are many people championing radiotherapy on the claims it has less chance of coming back but perhaps it uses a different description. Certainly check out this as they had a group of experts and came to a consensus as to what we should call recurrence. This was the talk but Ruuf Selles. One aspect I didn't like is that it was, at least to some extent, on the functional aspect of degree of contracture on the hand. Surely the disease is there if there are nodules and cords, certainly this has no application to Ledderhose where you don't get contracture. I agree that it may not be important for DD where the degree of contracture and therefore function is the most important thing but it just would have been nice to acknowledge the nodules and cords as this is when patients (or at least I would) go to my doctor and therefore I would say the disease has come back. It was not included because (surprise, surprise) the presence of nodules and cords is not an indicator for surgery and some treatment release the fingers but do not remove the cords etc.

Does skin grafting reduce recurrence. As best I could tell it does but there are of course other factors that need to be taking into account when using this.

Later on:

Looking forward to this afternoon as I have seen that Professor Seegenschmiedt is doing a lecture on radiotherapy and he includes a section on Ledderhose, can’t wait and look forward to the discussion of this section as all the surgeons surely cannot deny proper clinical data from him and the obvious results from the patient survey that I will be presenting.

Overall another good session and for me second favourite to yesterday morning.

Patient Series - November / December 2014

This post is the first catch up on the patients taking part in the series of monthly updates. Please note that not every patient will always take part, to see their introductions and all posts related to this check out the following page: Patient Series 

Every 3 months I will try and supplement this post with a second one summarising the experiences of each patient so far. 

Patient 1: 

 1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed? 

The nodule in my left hand is growing, my little finger is contracting. Under my left feet the lumps are growing slowly. Walking more than 30-45 minutes is painful, can’t stand still for more than 1 hour. On a bad day every step is painful.

2.Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain. 

On a scale from 0 –10 the maximum pain is 8, minimum is 1. The average is 5

3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost (if happy to share) and how this has impacted the condition 

I visited the doctor for my right hand (6 weeks after surgery). My right hand is working as normal, no pain, no medication. This was the quickest recovery from the three operations they have performed on my hands. The operation for my left foot is scheduled. I am afraid there are no other options. According to the professor the operation will take 8 hours (microsurgery is involved)

4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact. 

My right hand is working as usual without pain. My left hand is painful sometimes. The pain in my left foot makes that I can't walk very far or stand on my foot for a long time.

5.    Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition.

No exercises at the moment, I work 45 hours a week at the moment. Most of the time in the office, typing and working with my hands. Working outside 3-4 days lost month.

Patient 2: 

1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed? 

No change since my last update.

2. Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain. 

My pain has increased but I have just had my first week of RT

3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost and how this has impacted the condition. 

I had my 1st week of RT so my feet are very sensitive and are hurting more than normal.  The hospital where I'm having it done are terrific and I get lots of interest from the staff as most of them have never had a patient that didn't have cancer. I start my 2nd treatment on January 5th.

4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact. 

I am a co-founder of a walking group that trains year-round and my life is set-up that I can walk everywhere without having to drive.  I've had to take a break from training with my group and will reassess what I'm going to do after my RT treatment.  I've started driving everywhere or take a cab.

5. Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition. 

No diets, if anything I've been eating more, which isn't good since I'm not as active as I was before this. I've been doing lots of calf and leg stretching which seems to help before the RT but not as much now. but I think that's just because the RT has bothered it.

Please list any other information that you think would be useful.

I don't have anything now as I'm just working through this one day at a time.

Patient 3: 

1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed? 
My hands have improved, the nodule and the cord on my left hand have softened greatly. The nodule is almost gone. No pain. My pinky finger on my right hand has more flexibility and can stay straighter. No pain.

The cords in my feet are not as hard, so they are softer. The foot cramping, while not gone has improved and I'm able to stay on my feet longer without having to sit down.

2. Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain. 

Improved

3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost and how this has impacted the condition. 

N/A

4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact. 

The only major difference has been using the phosfood. I started that around October 23rd. I also think following a ketogenic eating plan is also helping.

5. Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition.

Lol I've been trying to do some walking, but now my knee is bothering me! Hahaha can't seem to win:) 

Patient 4: 

1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed? 

In the last month, I have noticed no change in number of nodules but the area of the nodules has hardened noticeably and widened slightly.

2. Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain. 

After one longish bike ride, I felt pain at about level 2 so no need for painkillers but I have only really felt discomfort not pain before. On average, I felt mainly discomfort this month although again for the first time, I felt discomfort when driving my automatic car with my LD (right) foot on the accelerator. An ice-pack eased my foot burning after the longish bike ride.

3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost (if happy to share) and how this has impacted the condition

Same as last month really except less cycling: 

 (Since diagnosis, my lifestyle has changed as follows:

- minimal walking but more cycling 

- very soft shoe inserts from my podiatrist as well as custom made orthotics (not for correction but for soft support under my nodules) 

- instead of about 2 glasses of alcohol a week I now drink very rarely

- I used to take calcium supplements and glucosamine with chondroitin daily - I no longer do so

- I now take vitamin b6 and b12 supplements

- I have a small handheld ultra sound device which I use on both feet twice daily for 10 minutes

- I drink about 2 tspns apple cider vinegar diluted in a glass of water daily

See above for self treatment. - ultrasound and vitamins. I also stretch my feet and toes each morning before putting my weight on them. The ultrasound device was about $180 Australian dollars. The podiatrist I visit is cheaper through community health ($11.50)) per visit) and orthotics made free by her.)

4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact. 

I have cycled less this month and so generally exercised less. With the hardening of the nodule area, I tracked down a Dr Grenfell in Bendigo which is some 200km away (rough guess on km) and received one email in response. He wrote a paper with Dr Borg on radiotherapy. I haven't heard back in response to another email I sent with questions. 

5. Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition.

I am afraid that I cycled less after I experienced a bit of pain post-cycle. (I must do better)

I have cycled a couple of times this month. 

Please list any other information that you think would be useful

Still on HRT. Rather painful shoulder one day for no apparent reason and sore knees after a bike ride so I weakened and took a glucosamine which I know actually helps my knee problems.

Patient 6

1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed?

Overall a decrease in pain

2. Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain.

week 1 Cycled to work and from work (8 miles round trip) 3 days – decrease in pain

week 2 Cycled to work and from work (8 miles round trip) 2 days – still little pain

week 3 Saturday - Went Christmas shopping, increase in pain, couldn't get to sleep that night for the pain.

Sunday - Rested, pain moderate.

Monday - Went to work by car, had a walk out at lunch time, that night the pain was preventing me from sleeping. Tuesday - Went to work by car, struggling with walking around work and having to take extra pain relief.

Wednesday- Cycled to work, pain still bad, cycled home, that night the pain was between low and moderate. Thursday - Cycled to work, little pain and walking so much better.

3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost (if happy to share) and how this has impacted the condition

Amitriptyline 20mg a day and codeine to take as an when to help with pain.

4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact.

As you can see from the answer above, there has been times this last month when the pain has been so bad it prevented me from sleeping and I was struggling to walk. I have started cycling regularly to work and back (8 mile round trip). Yet again proving that for me cycling helps.

5. Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition.

Cycling has been the only exercise I have done this month.

I am continuing to eat smaller portions and have been losing 1lb a week

Patient 3: 

1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed?

No new nodules but I have noticed a fluctuating from day to day in  softness and size.

2. Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain.

Pain level is none in the morning maybe sometimes a 2 at night.

3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost (if happy to share) and how this has impacted the condition.

Standard process phos food I take about 40 to 50 drops a day. By taking this I have my life back.

4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact. 

Only distance walking is something I can't do, I was doing 5 miles a day and now only about a 1 mile or so

5. Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition.

Still mild exercise compared to before nodules.

No diet change

Patient 8: 

1. Nodule/nodules on left foot continue to change. They have a figure of eight contour and are increasing in size. Right nodule has stayed the same.

2. Maximum pain: acute pain 7/10 when tearing occurs

Medium pain: tolerable 4/10 aching.

Minimum pain: no pain when resting if I have not walked or stood for any length of time.

3. Have new insoles prepared by my podiatrist to reduce pressure on nodule but support the rest of my arch. No cost - National Health Service. The problem is getting them positioned in my shoes properly.

4. Impact on my daily life is pain after a busy day walking or standing. Trying to reduce the amount of standing and I am doing less walking. When I walk fast it produces the most pain so I am using my car more for short trips when I'm in a hurry.

5. I have not walked the dog daily this month but feel I should try to keep this going for health and fitness.

6. I feel that the colder weather increases the pain and aching in my feet. My main challenge is finding appropriate footwear. I have some trainers by Meindl which are great but need replacing. Really flat shoes cause discomfort. I have some new leather boots with a small wedge heel which are very comfortable. They seem to reduce the stretching which causes pain in my arch.

Patient 9: 

1. In the last month have you noticed any changes in the pain or size of the nodules? Or have any new nodules have developed

No, though I did notice that whereas last year this time if I put the balls of by feet together the lumps on the arches almost touched, this year there is nearly a centimetre between them.

2. Please list a) The maximum pain b) the average pain c) the minimum pain you experienced this month and anything that improved or worsened the pain.

Very little pain.

3. In the last month what medication or treatments have you had, please describe in as much detail as possible including whether prescribed or home treatment, if applicable where the treatment was administered, by whom, cost (if happy to share) and how this has impacted the condition

Second pair of insoles still slightly less comfortable than the first pair, but not bad really.

4. Please describe how the condition has impacted you on a daily basis in the last month and any new steps (not treatments) that you have taken to try and alleviate this impact.

Little impact, though I find standing for long periods uncomfortable. Think this was true before the fibromas appeared though.

5. Please describe the level of exercise that you have been able to achieve this month and any specific diets you have used if you think they have impacted the condition.

Flying to the Canaries tomorrow for a Ramblers Cruise and Walk holiday. Last year I had no orthotics, the lumps were hard and painful and I could do very little walking? I am hoping that this year will be different. More worried about my knees holding out!

Update on everything

The Update

This is just one of my updates to say that I am still around and working on things in the background. Again in the last few weeks I have had patients contacting me and it is nice that I am now able to put them in touch with patients that are fairly local to them and in some cases have had treatment with the same doctors that they are considering seeing. This is really good as it means not only can I try and give out the information that I have but I am also able to spread this and let them get knowledge from someone else.

I am hoping to turn this into a network of sorts. It would be great if I could have a list of contacts, just name, e-mail, home city / country and treatments had / specialists seen. Then when someone contacts me I can point them in the direction of this person, or to the network page where they can find someone with a similar experience and ask me for their e-mail (I would not want to publish these on the internet.

Interviews on the way from both professionals and patients although they have been "looking" at the questions for several months so I am starting to doubt whether they are going to come or not, at least I have tried. It would be great to get some more information on Verapamil and Cryo so hopefully I get some responses. I am also working with another patient and a professional on 2 separate posts which I hope to find the time to do soon.

How you can help:

As always don't forget that there already is a network or sorts, the Facebook page is building likes and so there are a growing number of patients that will see your post should you share your experience.

Please consider hitting the plus 1 button on the right if you found the site useful, this will hopefully help others find the page and will help to moves things forward.

Volunteer your story. It is always great to hear from patients, if you have had treatment and think that sharing it with others might be helpful then please contact me and I will post it, or send you questions to do an interview as I have with many others. Equally it would be great if people would let me know if they are willing to be contacted by other patients should I think that their experience and knowledge might be useful to them.

 My foot?

I have been really busy in the last few weeks. As I have mentioned previously I have started running, my foot has been coping well with that and I have started to enjoy it. As part of a charity run for work I managed to run 10km, a great achievement for me. I am also back playing badminton and working towards becoming a fully qualified coach. My movement around the court is still flatter than it was before my foot got bad but hopefully I can lose weight and get back to where I was. My foot has been coping great, in fact I would say that the post run and post badminton soreness is decreasing so the only thing that still gets to me is standing for long times.

The baby
 
Amelia is growing nicely and continues to develop every day. She is well trained and sleeps through the night, as she has done since she was 8 weeks old. She is a cheeky monkey and thinks she can get out of any situation by smiling sweetly and to be fair to her that works on most people excluding her Mum. She has an infectious laugh and it is wonderful to see her starting to develop her own personality and beginning to try and become mobile.

And Finally...

Thank you everyone for your continued support, the blog went over 90,000 page views recently and it should go past 100,000 in the next 3 months, it still seems crazy to me that so many people want to view my blog and find it helpful. I will certainly have to do a review post once I reach this milestone, after all I did suggest I would do it back when I got my first 1000 page views.

Interview with Dr Silvers, a podiatrist in Texas

Today I have another interview with a specialist, this time it is with Dr Eric Silvers. The answers he has provided are short and to the point and he has clearly not put much effort into his responses as he has even ignored some parts of some questions. Still he has taken the time to respond and the one thing that he does say is that he has not much success with verapamil. I think his comment about radiotherapy, whilst not fully answering the question does actually reveal some of the reason why there is so little awareness of radiotherapy. 

Dr. Eric M. Silvers founded Advanced Foot and Ankle Center in McKinney and Prosper, Texas in 1998.  During his podiatric education, he was the recipient of the EFN and FPME scholarships as well as the Earl G. Kaplan award for academic and clinical excellence. Dr. Silvers completed a two-year foot and ankle surgical residency at Monrovia Community Hospital in Monrovia, California. Upon completing his residency, Dr. Silvers worked in Durant, Oklahoma where he practised one year prior to opening the Advanced Foot and Ankle Center in 1998. He now practices in McKinney and Prosper, Texas exclusively.
(Above information and photo reproduced from here with permission)

To see the location on a map click here.

1) How long having you been treating plantar fibroma's? 

Since 1997

2) Roughly how many patients have you treated, and where do you treat? 

I have treated, over the years, around 200 patients, possibly more.

3) On your website you list the following treatments, with each can  you please say whether you do them, if yes then what is the procedure and success rate and if no why not?

Invasive Treatment Options

1. Corticosteroid injection into the fibroma

I often inject the fibroma with corticosteroids but never exceed 3 in a 12 month period

2. Surgery – complete removal of the fibroma or the entire plantar fascia.  

Surgically, I take the fibroma along with a very healthy portion of the plantar fascia, typically the medial and central band.

Non-invasive Treatment Options

1. Stretching

I don't find this effective

2. Padding 

Often effective and I do pad the fibromas with felt padding or accommodative custom orthotics.

3. Orthotics

See above

4. Physical Therapy

 I do not use PT for the treatment of fibroma.

5. Transderml Verapamil 15% Gel

I have recently started using Verapamil again--past experience with this has not been very effective. 

4) I noticed that you do not mention radiotherapy, this is widely regarded as a good treatment option as discussed at the 2010 Dupuytren's Symposium, what do you think of this treatment option and why do you think remains fairly unknown in the USA? 

I cannot comment on Radiotherapy in the treatment of plantar fibroma's as I have not used it yet. 

5) Do you have any other advice you would like to give to patients with this condition? 

Surgical Excision should be the last resort and only performed by those who have experience and training with their excision.   Along the distal plantar aspect of the central band lies several common digital nerves that can be damaged during dissection.

Interview with Dr Keith Denkler

Today I have an interview with a specialist, this is the first time in about a year that I am doing one of these posts but hopefully there will be several more of them in the coming weeks as I try to branch out and discuss the treatment options with specialists from around the world. I am quite keen to talk to any specialists in the USA, particularly those doing radiotherapy, this is because I am often asked about them by people e-mailing me and it would be nice to give a good answer. So if you have been treated in the US then please get in touch and if you can let me know who you were treated by and if you have contact details (especially e-mail) please provide them. Thanks. 

Right onto today. I was browsing the web last week looking for a Dr or two to pester about these conditions, I thought it would be great to chat to someone who has done the surgery and I came across the following website with loads of information: 

http://www.plasticsurgerysf.com/dupuytrens/

There is a lot of good information on there so I thought that this person would likely be well informed and was worth contacting, I sent him an e-mail and although he was happy to help he did admit to not having done surgery on many Ledderhose patients but has seen a lot of patients, here are the answers I got. Some are not as detailed as I would like but the professionals are of course very busy so any response for a blog is a great result.

 Dr Keith Denkler  

Profile (from his website): (Information posted with permission from website listed above)

Dr. Denkler has been practising medicine since 1989 in Marin County, California. His practice includes both plastic (aesthetic-cosmetic) and reconstruction surgery. Dr. Denkler has achieved board certification in both plastic and hand surgery and teaches as a Clinical Professor of Surgery at UCSF Medical School. Dr. Denkler is one of the few doctors offering treatment for Dupuytren's contracture using the French needle technique called NA (needle aponeurotomy), a type of subcutaneous fasciotomy Dupuytren's in addition to XIAFLEX™. Dr Denkler is still based in California.

This page may be of interest for Dupuytren's patients: http://www.plasticsurgerysf.com/scrapbook/

Now on to the interview: 

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

I have been treating these conditions for almost 25 years.

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

I have treated thousands of patients with Dupuytren contracture and have seen hundreds with Ledderhose.

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

 

My treatments are predominately needle and or Xiaflex/Xiapex. I only occasionally do surgery.  Ten years ago I did only surgery, using the wide awake technique which I developed.

https://en.wikipedia.org/wiki/Dupuytren%27s_contracture
For Ledderhose, I occasionally have excised, wide-awake, but scar tissue tends to replace the Ledderhose.  I have done this in about half-dozen patients. 

I have done a few dozen needle aponerutomies for Ledderhose, which can give some improvement in severe cases.
 

I also inject Kenalog(cortisone) which can soften nodules.
 

Xiaflex/Xiapex may have a role, but the it is very tender and sore for some weeks and my experience is limited to a few patients with small doses.  The extra enzyme from the hand can be legally used on the feet.  Otherwise the enzyme is not approved in the USA for Ledderhose.

Mostly I recommend starting with Kenalog injections, then needle, and then perhaps wide awake surgery or enzyme.

There is no optimal treatment.  Freezing (which I don't do) may be beneficial.

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

These are chronic conditions and are managed, not cured.

Keep the treatments simple with needle, or enzyme, or both.  Save surgery (has highest complication rate) for severe cases not amenable to the other treatments.

Overall there are some very interesting points that he makes, in questions 4 he mentioned keeping the treatments simple but he does not mention radiotherapy, in fact it is not mentioned anywhere in his report. It is mentioned, although briefly, on his website that I linked to above. 

It is interesting that the technique of choice in the last 10 years, for Ledderhose at least, has shifted from " Ten years ago I did only surgery," to now "Save surgery for severe cases not amenable to the other treatments." whether this is just because he now does the other treatments or because the optimal treatment path has changed I don't know, of course Xiapex was not available.

 

An updated Ledderhose story

I thought that it was about time that I updated my story, so here is the whole story, the old stuff is in blue 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. 


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 fiancé, 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). 

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.