Being careful

Although I am now in a really good place with my Ledderhose I still have to be careful. For those that aren't sure I am not "cured" for lack of a better word the condition is in remission. The pain has gone and I no longer need a walking stick, I am running and for the most part I don't think of the condition any more. 

There are however a couple of exceptions to this and they are more of an annoyance although also a constant reminder and something that makes me remember how important it is to help patients that are in the position I was a couple of years ago. 

1) Hitting the arch: The lump, although significantly smaller, is still there and direct impact on it can be painful. For example I was walking down the stairs the other day and I stepped over the baby gate and slightly misjudged my step and this resulted in me bashing my arch on the bottom step. This bashing was incredibly painful and significantly more that had I done the same thing on the other foot. Of course I could wear trainers all the time but with the little one running around I would rather not risk treading on her toes. 

2) The orthotics: Buying new shoes is a real pain I have wide feet and the orthotics are obviously wide to cater for that but also they add depth so I have to get shoes that have the height to fit my feet (which are also fairly tall, think brick shape) and the orthotics. 

3) I am still wearing the orthotics. Not sure if I could get away without them and is something I am considering trying as I have so little pain at the moment. The aim of the orthotics now is to try and get me to walk normally rather than on the outside of my foot as my body learnt to do that whilst the foot was bad. 

Don't get me wrong I am not complaining however there are still things that need to be catered for.   

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..

Laser treatment Plantar fibroma patient from USA

Today I have an interview with a plantar fibroma patient from the USA, she has undergone laser therapy and shares her results so far....

1) Do you have Dupuytren’s and /or Plantar fibromatosis?

Just Plantar Fibromatosis

2) How old were you when you first noticed the fibroma?

67

3) Where are you from and do you consider yourself to have any of the common risk factors?

I was born in Butler, PA., USA of Scotch, Irish, German decent.

I have none of the known risk factors.

4) What treatment options were you initially offered?

I was referred to a foot surgeon who told me that there was very little successful treatment for this condition. He told me that neither he nor his patients were satisfied with the outcome of surgery or cortisone injections. 

He was working in conjunction with the University of Arizona researching the use of laser in the treatment of neuroma and was having some success. He thought that fibromas might also respond to laser treatment and asked if I would be interested in giving it a try. Faced with the other treatment options that seemed to not work, I chose to undergo the laser treatment he suggested.

5) How was the laser treatment?

The treatment was for a fibroma on my right arch which looked remarkably like the photo you posted of yours.  I received 14 laser treatments between July 27, 2013 and February 14, 2014.  Each treatment lasted approximately 14 minutes and only about 2 minutes involved moderate pain.  The first 10 treatments were one week apart.  The final 4 were approx.. 1 month apart.  In mid-October (part way through the laser treatment) we decided to include Verapamil Gel Therapy as part of my treatment plan.

At this point I was part way through the laser treatments and it seemed like it was working.  When Dr. Bocian suggested and explained the addition of verapamil gel, I trusted his opinion that this was a reasonable course of action for me.  

I had developed 3 very small nodules on my left foot, but they were not bothering me in any way so they have not been treated with the laser.

I used the gel 2 times per day on both feet and Dr. Bocian would apply it to my right arch fibroma immediately preceding the laser.  So the Verapamil was used 7 times with the laser on my right foot.  I continued to use the Verapamil gel on both feet 2 times per day for 9 months from October through June.  This concluded my treatment.

Today the nodules on my left foot remain small and asymptomatic, and the laser treated fibroma on my right foot cannot be seen and can barely be felt.  The pain is gone.  Occasionally I experience a very mild discomfort (where the restructured tissue of the fibroma is) with weather changes (we have no idea why this would be) or if I wear shoes with a high or padded arch.  The discomfort disappears when I change shoes or the storm front passes. I currently walking 7,000 – 8,000 steps a day and I attend 3 aerobic fitness classes a week.  All in all, I am very happy with the outcome of my treatment from Dr. Bocian.

As a side note – The laser treatments have not been approved to treat fibroma, so my health insurance covered none of the expenses.  The cost of the Verapamil Gel was $790.00.   I filed a request with my health insurance carrier to cover the Verapamil Gel and was denied.  I filed an appeal, since they did cover the use of Verapamil for other ailments.  There was much sarcastic laughter around our house the day I got the letter from them stating that they were going to reimburse me 22 cents for the sterile water used in the compounding of the gel !

Interview with Aaron Wolfson, Radiotherapy specialist in Florida

Today I have an interview with Dr Aaron Wolfson from Florida. He uses radiotherapy to treat Dupuytren's and recently Ledderhose. I came across him when a patient I am in contact with was looking for a doctor in Florida and another patient I am in contact with is the patient they mention below. He seems happy with the way that he has been treated and said that the doctor I have interview here follows Dr Shaffer, that can only be a good thing. 

Aaron H. Wolfson, MD, FACR

Professor

Department of Radiation Oncology

University of Miami Miller School of Medicine

1475 NW 12th Avenue, D-31

Miami, FL 33136

Phone: (305) 243-4210

Fax: (305) 243-4363
To see this address On a map 

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

    I have been interested in treating patients with benign fibroblastic diseases (such as desmoids tumors, meningiomas, heterotopic bone, keloids etc) for over 20 years. I have only become interested in treating patients with Dupuytren’s and Ledderhose disease for the past three years. So far I have done four consults and one patient has accepted treatment (currently on a break).

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

    See above. The patient has Ledderhose disease.

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

I actually don’t know the answer to this question. I get about three to four calls a year from all over the U.S. for the past three years. You are correct about the risk factors and most I have encountered have more than one usually.

4) Roughly what percentage of the patients you have treated have had a family history of these diseases? 

    The patient I am currently treating has a family member with this disease.

5) You treat with radiotherapy, what protocol do you use (dose, no of doses and gap between the 2 weeks of treatment etc.) and what is the success rate on these diseases with radiotherapy? 

     I use the regimen proposed by Dr. M.H. Seegenschmiedt of Essen, Germany in  which the patient receives once electron beam treatment to the region a day for 5 work days followed by an 8 to 10 week break at which time the patient receives an additional 5 daily treatments (3 Gy per fraction x 10 fractions in total = 30 Gy).

6) Why is radiotherapy a better course of action than other treatments such as surgery? 

    The data from dr. Seegenschmiedt show only about a 10% progression rate with radiation therapy with up to about 50% progression rate with surgery.

7) What are your thoughts on other treatments that are becoming available such as Xiapex? 

    I do not have any experience with Xiapex but I am sure more medications will become available.

8) Finally do you have any advice or other information that you would like to share with Dupuytren's / Ledderhose patients?

  My main advice is to have early detection of the disease in which it is in the nodule stage. It is very difficult to treat the disease in the cord stage.

Wedding and honeymoon update with Ledderhose

A round up of my foot over the last couple of weeks:

So as regular readers will know I have not been around for the last couple of weeks because I got married on Monday 13^th February 2012 to my wonderful and brilliant partner. I was apprehensive about how my foot would cope with the demands of the wedding day and the expectations that are placed on the wedding couple. I am happy to say that the day was a wonderful success and everyone who I have spoken to has had a fantastic time and my Ledderhose did not get in the way. I was wearing my amazing orthotics that so far have done a great job of easing my pain.

So on the day I was up and down a lot and standing around for photos and then of course for my ten minute speech and the first dance, as well as not being able to let down one of the little girls I had a dance round the dance floor with her. I did have some side effects the next day but it was not as bad as I was expecting and I have basically spent the last week sitting in the sun so I can have no complaints there.

My plans for now are to get a few more posts on here about the science side of things and I have a few e-mail alerts from when I was away about Ledderhose and Dupuytren's so I look forward to seeing if they are any good. 

Wedding preperations

So today was quite a painful day. I do not think that this was because of yesterday when I was on my feet quite a lot but rather I think that this was because of the time that we had to spend on our feet at the wedding venue trying to decorate the place.

The decorations in the evening room was left down to me and I wasn’t sure what we wanted to do as we didn't really want to spend lots of money but at the same time I wanted them to look great, really great. It was actually my idea in the end and something that I have put a lot of effort into making look great. We have round the outside of the room lots of photos of me and my partner starting at opposite ends as babies and then meeting in the middle.  The completed effect is fantastic and it was about my best idea for the wedding and I cannot wait for tomorrow.

My foot is being really bad and I am hoping that tomorrow is ok, I am taking trainers to change into if I need to at the end of the photos as I am not sure how supportive the shoes are and they are not going to help my Ledderhose too much compared to the same things in my trainers. 

How common is Ledderhose disease?

So just how common is Ledderhose Disease? 

For the most part the prevalence of plantar fibromas is unknown and so it is hard to say that it is a rare disease but this is often how it is classified. 

Here I am going to try to find as many different resources as I can that mention actually how common lumpy feet are. To be honest I do not have a clue what I am going to find at this point (having not yet done the searches) but I know that before I had Ledderhose disease I had never heard of it or anything like it and indeed everyone who I have spoken to about it has not heard of it or anything like it so how common can it be? 

I also go to the foot specialist in my local city and it was clear that he has had many cases of this and has formed opinions on the different kinds of treatments that are available and this makes me suspect that he has seen many cases. I then have to try to remember that he is a foot specialist for a large area that is probably several million people and has been for 20 plus years and so even if the rate is as low as 1 in 100,000 then that still means that he is going to see quite a few patients in that time with this disease.

1) 1.2 in 100,000 - So the estimate that I am going to start with is from the paper that I reviewed the other day [1]. In this paper they are looking through a lot of data in Holland and they find that the rate of occurrence there is around 1 in 100,000 [1]. This is in my opinion a very low frequency and would certainly mean that Ledderhose is a rare disease and in fact much rarer than I would expect. This is because if you use the figure above and apply the same rate to the UK which has roughly 62 million people you end up with a figure in the range of only 620 people with the disease and from what I have heard at the doctors this figure seems far too low. This figure comes from studying a small subset of the world’s population and perhaps the same study in another country would give 1 in 10,000 and suddenly you are looking at 6200 people in the UK with Ledderhose disease.

This pie chart visualises the proportion of people that this source indicates have Ledderhose disease. 1 in 100,000

2) 25% of middle aged and elderly people: I have frequently come across the site for PDlabs when searching for Ledderhose disease and plantar fibromas and on their site they say that this nasty thing maybe as common as 1 in 4 people in middle aged and elderly people. I am sorry but I find this figure is way too high, if it was this common then surely there would be many more people limping round the streets? In a way I have six grandparents and none of them have this condition, I also have many family members who are over 40 years old (I am not sure what counts as middle aged) certainly more than 10 people and none of them have had or heard of this disease. Where did they get this information from? Well it is this site here [3] "Lederhose disease is relatively common, and plantar contracture develops in 25% of middle-aged or elderly individuals" [3].

The above quote was given with NO references at all to back it up and they have spelt Ledderhose wrong so I am not sure how much faith can put in that being correct but many places seem to use this site for their information and there are lots of sites out there that quote this site and so all say this figure which made data collection for this post quite hard. Another thing I would say is that all they actually say is that LD is common but that plantar contracture occurs in 25% of people but is all of that caused by LD????

Another pie chart, this time to show the frequency that the above source suggests. Just look at the difference between the two. 1 in 4 or 1 in 100,000.....

3) "Rare" - To try to balance out the number of sites that base their information on the above I thought I would also post another paper that suggests that this disease is rare. This is a common theme, all I seem to be able to find is either it is rare or it is common and how are we the patients supposed to know what is going on when there are such conflicting statements out there. 

This is annoyingly as much information as I am able to find out with regards to how common this disease is. So on the one hand we have 1 in 4 and on the other 1 in 100,000. How common is it? In all likelihood somewhere in the middle. 

References:

[1] Eelco de Bree, Frans A.N Zoetmulder, Ronald B Keus, Hans L Peterse, Frits van Coevorden, Incidence and treatment of recurrent plantar fibromatosis by surgery and postoperative radiotherapy, The American Journal of Surgery, Volume 187, Issue 1, January 2004, Pages 33-38, ISSN 0002-9610, 10.1016/j.amjsurg.2002.11.002. (http://www.sciencedirect.com/science/article/pii/S000296100300432X)

[2] PDlabs - http://pdlabs.net/plantar_fibromatosis/whatisplantarfibromatosis.html

[3] Medscape http://emedicine.medscape.com/article/1061903-overview#showall

[4] Dominique Fausto de Souza, MD, et al, 2010, Ledderhose Disease: An Unusual Presentation,  J Clin Aesthet Dermatol. 2010;3(9):45–47. http://www.jcadonline.com/ledderhose-disease-an-unusual-presentation/

Updated 31/05/2012 (Formatting and Typo changes on 03/04/2014)