Progression of Ledderhose disease

Below is some information that a visitor to the blog felt was missing. They said they had some information on it and they were happy to write it up. All information is posted with their permission, in fact they wrote it for the purpose of me posting it. 

It is true that I do not have much information on the progression of the disease, this is partly because, as you can see below, there is not a huge amount of information out there and secondly because I started the blog looking at treatments as that was the stage as I was. So for all of those that are new to the condition you may find the information below interesting to read. I felt that the paragraphs below were not enough to warrant a complete post so I conducted a small survey to complement the information. 

There is very little statistical information on the potential progression of Ledderhose Disease (LD)/Plantar Fibroma (PF).  There are individual disease trajectories provided by individuals on various patient forums. These patient histories can not be properly weighed as indicative of the normal course of the disease because there is no broad sampling of patients, no regular follow up, no quantitative measurements.  Therefore, the reader does not know if these patients are outliers or the norm.  In addition, there may be completely fabricated patient histories that have been authored by unscrupulous people preying on the fear and desperation of patients to sell their products.

The most rigorous published scientific studies that I have found on the LD have been performed by German researchers who were investigating the effectiveness of radiation therapy on Dupuytren's Disease (DD) and Ledderhose Disease(LD).  What is of most value in these studies is their use of a control (untreated) population.  For example, Seegenschmiedt[1] reported that for a control patient population of 47 people with 67 affected feet with minimal symptoms, 6 year average time of observation, minimum observation time of 1 year, 10 feet (15%) had a spontaneous remission, 34 feet (51%) remained stable, and 23 feet (34%) progressed and required treatment.  

These data are quite remarkable as they indicates that for a large percentage of LD patients  (66%), the expected disease trajectory is stability or regression for a non trivial period.  

I wanted to complement this information with anything extra that I could find, this included information from a patient that contacted me around that time. They suffered from Ledderhose and despite having nodules bigger than mine they did not experience pain. I do think that up to a certain point the size of the nodule is not the problem, it is the location and depth under the skin and whether it hits a nerve. Once it protrudes significantly out of the sole of the foot this can then cause issues based on the size of the lump (that is all just my opinion and thoughts but is based on the size of the fibroma not necessarily being related to the pain caused, which as it turns out is the case in the survey).

In order to gather more information on this I conducted a small survey which revealed some interesting results. 

Participants were asked to rank from 1 to 10 (10 being most painful) their condition from year 0 (diagnosis) up until now or year 30 (only 1 participant had had the condition for 30 years). Below I have 2 tables showing some of the results. 

Change	Num Occurrences	Comment
-10	0
-9	0
-8	1	*Year after RT treatment, no later pain increase
-7	0
-6	1	*Year after RT treatment, no later pain increase
-5	3	*all 3 after surgery and again increased
-4	0
-3	1
-2	3
-1	14
0	107
1	55	*High number of 0/1/ 2 suggest that progression is normally slow
2	19
3	7
4	7
5	3
6	3	*But over 1/2 of respondents experience a sharp increase
7	1
8	0
9	1
10	1

Table 1: Column 1 shows the change from the previous year, column 2 shows the number of years in which this change occurred and the third column shows a comment. Colouring is used to group results together.

Avg Max pain
2.28	Max yr on yr diff 2
7.22	> 3 year on year diff

Table 2: The average max pain for patients split by those that report a max change year on year of 2 and those that reporting having a change of greater than 2.

Table 1 shows that in most cases year on year there is little change in the condition however 50% of patients experience at least one year where there is an increase of 3 or more. When used in conjunction with table 2 this shows that those patients that experience a large jump are more likely to have significant pain. I have not calculated a number to show this but this is not simply due to an increase in the number of years a patient has the condition but it is that those with high levels have pain have had a large jump and not a gradual increase. In fact with only 1 exception the highest pain level reached by someone someone without a large jump was 3 (the exception being level 8).

Several patients report large decreases in pain, the 2 largest pain decreases were both as a result of radiotherapy. There were 3 patients that report a minus 5 in pain, all of these were because of surgery but in all 3 cases the pain then rose again. In no patients did the condition naturally regress year on year by a significant amount when there was no treatment involved. 

The above information and the rest of the results are summarised below. 

•  The size of the nodule is not proportional to the amount of pain
• Age of onset does not impact on progression
• Male or Female does not impact on progression
• Generally when gets bad seems to progress quickly
• It appears that without a large increase in pain you are not like to be experiencing too much pain
• Significant decreases have been observed post treatment with radiotherapy and surgery, after surgery pain rose again.

Of course to get these results I arbitrarily chose a jump of 3 as being large. I did chose this before analysing any data to try and avoid bias. Also this survey did not have many answers as it was just an initial survey which may help in the future development of a more comprehensive survey on the subject or a database to collect patient information. The results in the summary are all results which were clear from looking at the data and no numbers or graphs have been provided but I can make upon request. 

Below are some examples of patients pain levels over time. 

(1) Radiotherapy for primary or recurrent morbus ledderhose: 12 year long-term outcome of a prospective phase 2 trial. M. Heinrich Seegenschmiedt, Etienne Hanslian, Mark Wielpütz

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.