Welcome

Welcome to the Ledderhose disease (plantar fibroma) blog.

My name is Gary and I am the author of this blog. I am a ledderhose patient from the UK. I am an ex-scientist and hold a degree in Molecular Genetics and I try and put this experience to good use exploring this condition.

I have pages here about the treatment options, patient experiences including my own, insights from medical professionals, explanations of the science and whatever else I think may be useful for fellow patients. Through the blog I have made contacts with many patients, professionals and charities and now work as a trustee for the British Dupuytren's Society.

Hopefully you can find the pages you want using the navigation menu above or use the search box to look for specific information.

Hope you enjoy reading the blog and please contact me at ledderhosedisease@gmail.com or leave a message on here to get in touch. All information will be kept private unless you tell me otherwise.

Thank you for visiting.

Thursday, 27 December 2018

Interview with Tenex Patient


December 26, 2018
Michele from Wisconsin – My Ledderhose Story

Dupuytrens, Ledderhose and related conditions support


Hello, I'm new to this community and I've read member questions about lumps on the bottom of their feet and was diagnosed with plantar fibromatosis or Ledderhose disease. I've have had this condition, on both of my feet for 15+ years, and I have it in my hands as well where they call it Dupuytren's disease. Mine happens to be hereditary, although other causes are possible. My ancestors were from Europe and I found an interesting article about the hand disease that talks about it originating all the way back to the Viking era https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1305903/ which is basically the same information I found about Ledderhose disease.

I could go on and on, but it took me years and tears and lots of pain before I found a combination of things to help me with the pain from my lumpy feet. Most times I seemed to know more than the doctors and physical therapists about my condition, which I found terribly annoying! But with persistence, a lot of internet research, I found a great family physician and podiatrist that have helped me tremendously. This disease is not curable, because it is in my DNA, but there is help to manage it.

1. Custom orthotics for me DID NOT work. I've had two pairs of them at about $1,000 a crack. They make a model of the sole of your foot and carve out areas where your lumps are. The problem I encountered was the area where my lumps had less pressure on them, but the harder type insoles they use just caused hurting in other parts of my feet. They also want to try and correct your gate, which at this point I don't need correction I need pain relief. My podiatrist agreed other patients noted they just caused other areas of the feet that ended up hurting. I feel the material they used for the insoles was never soft enough.

2. A Pedorthics shoe store helped me create soft flat insoles to use in my shoes and I myself used a dremel tool to carve out the areas with lumps to off-load some pressure from them. The rest of the insole was nice and soft for my feet and this has been a reasonable solution for me.

3. My lumps cause me serious pain and I'm managing that pain by using a combination of prescription drugs and topical lidocaine cream on the lumps. First for chronic pain I use Cymbalta or generic is Duloxetine. It is approved by the FDA for chronic nerve pain often caused by diabetes, but it helps my nerve pain as well. It's not only the feet that hurt, but my entire legs too. The other prescription is an anti-inflammatory drug called Diclofenac Sodium. Your doctors would decide what dosage to start you on. And last I rub 4% lidocaine cream on my feet lumps to take the edge off the pain especially when I'm trying to sleep.

4. I will AVOID Surgical Excision of Plantar Fibromas (https://www.ncbi.nlm.nih.gov/pubmed/18626366) until my options are either a wheelchair or having the surgery done. Again what I've read many people go through this very invasive surgery only to have the lumps return and sometimes with even worse effects than what they started with.

5. I have had 4 foot surgery with a much less invasive procedure called Tenex (see https://tenexhealth.com). This procedure softens the lumps and reduces their size making them, after recovery, a little less painful. I have this done every couple of years, because the lumps do not completely go away, and they do harden again over time. It is something that helps me maintain a somewhat normal routine so I can do my housework, shop for the groceries, and be more mobile again. So again this helps manage my disease, but does not cure it.

Interview with patient who had minimally invasive surgery (Tenex)
1) Do you have Ledderhose disease, Dupuytren’s disease or both?   

I have conditions, Ledderhose disease and Dupuytren’s disease.

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 dad had both conditions as well.  

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

  1. I probably had Ledderhose for 12 years before I learned about Tenex and had the procedure done to my feet.
  2. Custom orthotics, which were terrible, at about $1,000 each time (I tried them twice).
  3. 4% Lidocaine cream – a topical anesthetic.
  4. Physical therapy to stretch feet, but honestly the PT never saw my type of foot condition before! So it really did nothing for me.
  5. I was prescribed a T.E.N.S. unit for chronic pain, which can be helpful to reduce swelling and pain.
  6. I was prescribed Cymbalta or generic is Duloxetine for chronic nerve pain, and Diclofenac Sodium as an anti-inflammatory. These two have helped me a lot to manage my pain. I’d say they actually gave me my life back so I could get out of the house or even just be able to do my housework and be more mobile.

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

Absolutely, it’s not a cure just a lesser invasive surgical method to reduce and soften the lumps. It’s something I’ll continue to have done every few years until they find a better option or cure.

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

Before I was placed on my meds, I could walk, but with significant pain. I walked slowly and how much I walked or stood on my feet. I was horribly depressed from the constant pain at my young age (early 40’s) with no idea how to help myself. I saw 3 podiatrists, physical therapists multiple times, and finally my general family doctor suggested I see a podiatrist I knew. This is when my pain finally started to become manageable.

6) Tenex is not that familiar to me, please could you explain the difference between it and regular surgery?

Tenex uses ultrasound as an imaging tool to identify the Fibromas and visualize the procedure. A pen-like device cuts and removes scar tissue on the tendon. One hole is made in the Fibromas, with the pen-like device, and holes are poked all over the inside of the Fibromas and at the same time the device irrigates the wound and extracts the debris, making the Fibromas softer and smaller. It can be done with local anesthesia or under general anesthesia. I’ve had both and do NOT recommend the local it is very painful and you are completely awake.

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

The Tenex procedure can be very short, or in my case it took the doctor 1.5 hours of work on both my feet before she was done. My complete arches on both feet are covered in Fibromas. I was directed to have no weight bearing on my feet for 2 weeks, wore a walking boot for about 4 weeks total, and went through physical therapy afterwards as well. I found doing both feet at one time was easier, because it levels out my walking with the books they gave me.

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

It’s been two years since my last Tenex procedure and the lumps are hard again and big as they were before the procedure, but I expected this to be an ongoing procedure for me. I do recommend the surgery, because it does provide some relief. Some relief is better than no relief to me.

9) 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 Tenex?

My standard of walking is better, and yes if I’d not had the surgery I’d just be dealing with the big hard lumps, but surgery alone isn’t enough to keep me mobile. My prescriptions also do wonders for my quality of life.

Wednesday, 10 January 2018

Update on me and things

So overall I am good, I have a few interesting projects that I am working on and my foot is still healthy, check out the BDS to see how things are progressing with the charity. 

Slightly off topic for the rest of today but I wanted to mention another project that I have been working on that might cross over to the work I am doing on Dupuytren’s and Ledderhose. In my work I have been utilising various skills over the last decade now I have gained experience in the sciences, which is why this blog stared, and also in data analytics, database development and more recently python and machine learning. Stick with me here I am going somewhere.

You see I have started another blog on python and one of my projects with this is to do some analytics around the Dupuytren’s and Ledderhose area. There are some potentially interesting things I can do if we can get the data together that will enabled me to do it. I have had a look at the data from the 2015 survey and I am not sure that we asked the right questions in quite the right way for this kind of study.

For example the DupStudy is going to be collecting a lot of medical data and biological samples for patients and control groups, I would like to do a study (not dissimilar to the one presented at the 2015 Dupuytren’s Symposium) on whether there are any lifestyle factors that contribute a) to the onset of Dupuytren’s b) severity of Dupuytren’s and c) age of onset. Given the relatively small datasets I would be working with it would not likely yield amazing results, but you never know what could be found. By study I actually mean get the computer to do the work for me, I have been working with Neural Network and machine learning which means we might be able to spots trends and patterns in patients and therefore make predictions that would not be seen by human analysis. For now this is just a pipe dream and maybe one day it will happen.

I will need to have a discussion with some of my contacts and see if this is something we can get going.


For those that followed it the 2191 challenge is now complete, check out the link to the right to see how to got on, for January 2018 I am taking a break from running to make sure that my body heals from the niggles I developed towards the end of the year.