Story about Dupuytrens Contracture , Ledderhoses Disease / Plantar Fibromatosis.

A Dupuytrens Contracture story

Dec 24, 2015


Four years ago at age 58, I noticed slight dimpling in the palm of my left, non dominant hand, below the ring finger. Research lead me to think I had Dupuytrens given that I'm of Scottish decent. Early in 2012 I noticed a lump on the arch of my left foot. (I was unaware that my sister, 2 years younger than me, was also developing DD and LD.) I had plantar fasciitis from hiking a few years earlier and thought the lump might be scar tissue caused from that injury. When the lump continued to get larger, I did more research and decided it was Ledderhose. I noticed a fibroma had developed on my left arch almost a year later in later 2012 or early 2013. 
By spring of 2013 my right foot bothered me if I did much walking or standing and I'd experience odd tingling in my feet when at rest. My Chiropractor did some stretches on my calves and feet that seemed to soften the fibromas so he started using Graston Technique tools. He'd drag the instruments down the plantar fascia from my heal to my toe. After 5 or 6 of those torture sessions I switched to ShockWave treatment, which were not nearly so painful. I had a series of Shockwave starting June of 2013. There was some success in softening and shrinking the fibromas on both feet. Both fibromas were noticably smaller and softer, lessening paint. Unfortunately, the fibroma on my left foot went into it's fastest period of growth ever. The fibroma on the right foot is still smaller than when I started Shockwave in June of 2013 though it seems to be growing again, now. Both feet are certainly more painful. I suppose the increased pain could be from cumulative damage to nerves. 
I should mention that I broke my ankle in February 2013 and wore a foot brace for 2 months followed by 2 months of physio. I don't know if immobilizing the foot for so long helped to prevent regrowth of the fibroma on my right foot or not, while my left foot went into overdrive. 
Dupuytrens has been extremely slow in developing. The nodule I saw and felt in 2012 is larger and the cord is thicker but that's it. Three cords are just starting to thicken on the right hand but I don't feel any nodules.
I finally visited my GP in fall of 2014 I was pretty knowledgeable for a layman, thanks to The International Dupuytrens Society and internet. I told him I wanted to have RT. Though he had some experience with DD he had never heard of Ledderhose. He sent me to a Podiatrist who offered me more orthotics and said surgery was the only option. I went back and again asked for a consultation with Dr. Elizabeth Kurien @ Tom Baker Center in Calgary, AB. My Doctor told me that our BC provincial medical would not cover treatment in AB without me seeing local specialists and building a case to present to Medical Services. He booked an appointment with a plastic surgeon and an Orthopedic Surgeon. The hand specialist advised against RT saying it would cause skin cancer. He would perform either needle aponeurotomy or surgery when my disease progressed far enough (I am still at Stage 1). The Orthopedic Surgeon has a 14 month waiting list. I wouldn't get in till Spring of 2016. 
In September I started to feel desperate. So, I called Dr. Kurien to see if she could help me get in for a consultation. She assured me she has patients from BC all the time and I would have medical coverage. I called Medical Services to confirm. Armed with facts I had another visit to my GP. He referred me!! I'll have my first consult with Dr. Kurien October 19th. Horray!
Currently I am doing exercises, provided by a physio therapist, in an attempt to retain flexibility and taking Tai Chi as well. One of the fibromas measures 2cm X 2 cm and I don't know how deep it goes. There is a smaller fibroma in the same area of my arch. I have just one fibroma on the right foot that seems to have changed shape recently in the form of a small side shoot developing. I also have a painful bump or lump on the pad of my little toe. I don't know if it is related or something different altogther because it seems to float when manipulated.
November 24th, 2015 I completed the first round of radiation yesterday. I found the whole radiation team to be very friendly and willing to answer any questions I may have. The first day the Radiation Oncologist, Dr. Kurien mapped out the areas to be rediated and discussed treatment with 2 radiation technologists. A physicist also dropped in for a quick consult. Once the field of treatment and was determined they fitted me with lead guards (dipped in a plastic paint to prevent the lead from touch my skin). It was determined that a custom guard was needed for my hand so they proceeded with treatment of my feet and my hand treatment was rescheduled for the afternoon. On day three I noticed that inflammation was reduced, pain was reduced and the nodules were more pronounced, I was able to feel a slight vibration type of sensation during treatment. Since this is not common the physicist was consulted and he said he would not discount it. Patients can sometimes feel or experience things during treatment and that he was not concerned. Anyway, I was altogether very pleased with the experience. So far, I have not noticed a reduction in the size of the nodules or cords nor have I experienced any side effects. It was mentioned that they have seen an increase in the number of patients seeking RT for Dupuytrens and the radiation technologists asked me as many questions about DD and LD as I asked them about the treatment, showing a lot of interest.

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1 comment
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Thank yog for sharing!! I can relate to the first part of your journey so highly!!

I am not yet at the point of treatments I have just been diagnosed but I am using a home ultra sound machine which seems to help :) so I'm staying positive!!

 

Commented 8 years ago Rose 10

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