Survey closing soon

Hi Everyone, the survey is coming to an end soon. It doesn't take long and is for any US based Ledderhose patient. If you have had treatments some questions may not apply but you can still complete it.

Survey - http://ledderhose.blogspot.com/.../ledderhose-patient...

Please do take part and help gather some data on Ledderhose and its treatments.

Ledderhose patient Survey

Posted in partnership:  Please consider filling out this short survey about your experiences as a person affected by plantar fibromatosis. This survey is being conducted by ICON plc on behalf of Endo Pharmaceuticals Inc., which is conducting research on an investigational treatment for plantar fibromatosis, to better understand the experiences of people affected by plantar fibromatosis in the USA and how it impacts their lives. It should only take 10-15 minutes and you can enter to win one of three ($100) gift card prizes: https://s.surveyplanet.com/0m6ytm4u

Patient Story - Ledderhose patient from Australia

Today I have some information from a patient in Australia that I connected with on Facebook, they have had surgery and some injections and are hoping for some more injections.  

My name is Janine, I am 48 and live in Melbourne, Australia. I first noticed a lump on the arch of my foot at the age of 41 and was referred to a Podiatrist. His advice was to get orthotics, so I had some orthotics made which worked great for when I was wearing trainers but they were too thick for any other types of shoes. I was advised to monitor its size with regular ultrasounds. The first ultrasound also found smaller fibromas in my other foot.
I then took on a new job which involved me wearing high heels every day which played havoc with my fibromas. I was recommended to visit an orthopaedic surgeon and he advised to continue with ultrasounds and track their growth and re-visit him 12 months later. The fibromas in both feet continued to grow at 0.5cm per 6 months and were becoming more and more uncomfortable. Plus the one on my right foot had changed shape from an olive to garlic bulb. 

When I re-visited the surgeon he recommended surgery to remove the fibroma as the change in shape could well be an indication of cancer and there was also a very slim chance that they would grow back. The surgery made sense to me and so at great financial expense I had the surgery in 2016 to remove the fibromas on my right foot. Roll on 4 years to 2020, my scar has given me daily pain since the surgery. It swells when I am sleeping, calms down after a hot shower and then gives we sharp nerve pain during the day. 

By 2020 I had noticed that lumps were appearing out the side of my scar and so I went to see a Podiatrist surgeon. He told me that I should never have had the surgery and that the fibromas had indeed grown back and he sent me for an MRI. He gave me a treatment of cortisone injections for the fibroma and collagen injections for my very sensitive scar. I was scheduled to have a further two sessions of the cortisone injections when I discovered this wonderful facebook page. 

I have since provided the Hyaluronidase enzyme injection information to my surgeon and it turns out that from February 2022 this will be covered by my insurance and so we have agreed to delay any further treatment until then.

Patient Survey Results from 2015

I mentioned recently that I wanted to do another patient survey, this time Ledderhose specific and probably focusing on demographics, risk factors and patient opinions on the treatment options they have received. I plan on making sure that any survey would be better planned in terms of how to perform the data analysis, something in my day job as a database developer I have to think about a lot. 

Here is a throw back to the 2015 symposium where I presented on the Ledderhose portion of the survey. 

Dupuytren's and Ledderhose Patient Experience

Dupuytrens and Ledderhose Disease 

A Radiotherapy Treatment Experience Written August 2019 – a patient’s review 

I am a 68 year old New Zealand male with a long history of Dupuytrens disease (palmar fibromatosis) and Ledderhose disease (plantar fibromatosis). I have detailed my experiences in this article in the hope that it may give other sufferers of these diseases some insight into the use of radiotherapy as a form of treatment. I documented my treatment period (2018/2019) with photos, notes and measurements and have used these as the basis for this report. I have tried to be accurate and practical with my assessments and hope I have struck the right balance in the content. This article reflects my own journey and private opinions, based on my research and experiences. 

Dupuytrens overview. 

I have a family history of Dupuytrens and I first noticed I had early symptoms of the disease back in the mid 1980’s. These symptoms slowly progressed over the years, with signs of thickening skin, followed by nodes, cords and finally contractures of the fingers. During the period 1996 to 2013 I had 4 surgeries (2 on each hand) for Dupuytrens. As my hand surgeon noted, I have quite an aggressive form of the disease. The surgeries addressed the various nodes, cords and contractures in the palms, index and small fingers and in the webs of both hands. One of the procedures was a revision surgery with a large, full thickness skin graft to my right little finger. In the period 2013 through to 2018 the disease progressed noticeably in both my left and right hands. In both hands there were nodes in some fingers, thickened areas of skin, cords, lumps developing in the webs between thumb and forefinger and also the beginnings of contracture to some fingers. By mid 2018 it was obvious that another operation on my left hand was going to be necessary at sometime in the next couple of years and that the right hand would also need future surgery. Obviously I was not looking forward to the pain, risk, cost, or the 8 to 12 week recovery periods. I will come back to Dupuytrens later in the article. 

Ledderhose overview. 

I probably noticed the first signs of Ledderhose in my feet about the same time as I noticed the Dupuytrens forming – in the mid 1980’s. These signs presented as: a 10mm diameter lump along the arch of each foot, midway between the ball of the foot and heel, and on the left foot there was an additional 10mm lump just below the ball of the foot. Over 30 years these lumps changed very little and caused no problems at all - although I noticed the very slow development of 2 extra lumps along the arch of both feet. 

Catalyst for Change. 

In early 2018 I noticed that the minor lumps in both feet seemed to be getting bigger. By mid 2018 it was obvious that I had 2 to 3 rapidly increasing lumps in each foot and the increases in size were clearly noticeable with each passing month. These were beginning to cause regular pain when standing or walking and they frequently caused a sharp aching sensation, even when my feet were elevated. These distressing developments, coupled with the ongoing Dupuytrens symptoms I mentioned above, were the catalyst for some serious research. My previous experience and reading indicated that for both Dupuytrens and Ledderhose disease the most common treatments were surgical. I already had extensive experience with Dupuytrens surgeries - all successfully performed with no complications but with a reoccurence of the disease guaranteed. 

I discussed the Ledderhose situation with my GP and underwent both ultrasound and then MRI scans to confirm the extent of the condition (and to confirm that the diagnosis was correct). Subsequently I was referred to a specialist orthopaedic foot surgeon for examination and consultation. Essentially the specialist’s written assessment was that my only option was to wait until the disease became debilitating and then to have surgery. He specifically noted that there were no proven alternative treatments. 

My reading had indicated that this disease is know to reappear aggressively after surgery in approx 80% of cases. The level and degree of recommended surgery to minimise reoccurrence is, in my opinion, horrific. My interpretation of the medical terminology is that it involves removing the skin from the soles of the feet and replacing with a skin graft. I considered the side effects of this procedure would dramatically affect my lifestyle – basically, severely limiting my mobility. This was not a surgery that I was prepared to consider. 

Treatment Options. 

I began researching alternative treatments for Dupuytrens and Ledderhose disease. Among them I considered collagenase injections, shockwave therapy, steroid injections and radiotherapy. In my opinion the two medical conditions are essentially the same disease, presenting differently in different parts of the body and I was hoping to find a common treatment for both conditions. 

Treatment Objectives 

My first, and major objective was to halt the progression of the disease - thus avoiding or postponing the need for immediate surgery. The second was to slow or prevent a re-occurrence of symptoms. The third objective was to reduce the effect of these conditions in some practical way - perhaps by reducing the size of lumps, nodes, etc, or perhaps reducing the degree of contraction in fingers or toes, or by simply softening the skin on palms or soles. Extensive reading and research revealed that radiotherapy would likely achieve my major objective and that the second and third objectives could be considered reasonable as an expected outcome. The internet provided a wealth of information – although it took some months for me to reach my conclusion that radiotherapy was the right option. In late August 2018 I began an independent search for a treatment provider by directly approaching private radiotherapy clinics and specialists across New Zealand. My situation and prospects were such that I was also prepared to travel to either the UK, Australia or Germany if necessary. 

I received a positive response from Dr Ramesh Arunachalam, Consultant Radiation Oncologist at the Auckland Radiation Oncologist Specialist Centre. Dr Arunachalam already had experience in treating Dupuytrens and Ledderhose and he agreed to treat me. He gave me clear guidelines as to the most probable outcomes of the radiotherapy and detailed the procedures along with a few possible minor side effects – seemingly, the worst being the possibility of long term dry skin. He did note that radiotherapy is not normally useful in a situation where contractures have already developed. The radiotherapy would involve treating the cords and nodules with a 20mm margin to a dose of 30GY in 10 treatments. This would be done via a split course where 15GY is delivered as 3GY each day for 5 consecutive days. This procedure is repeated after a break of 6 – 8 weeks. The plan was to treat my feet first and to review the results 12 weeks after completion of the radiotherapy, with a plan to then schedule the same treatment for my hands. 

Ledderhose Treatment. 

Treatment was scheduled to begin in late September 2018. The week before treatment began I visited the hospital for approx 2 hours so that some custom shaped, sheet-lead, shields could be made to protect the areas outside the radiation target zones. At each radiation session these were taped across my hands (total set up time of approx 5 mins per hand). The radiation delivery was 2.5 minutes per hand – the machine was silent and the procedure completely free of any discomfort or sensations. It was actually difficult to believe anything was happening. Each visit took a total of approx 25-30min. By the start of treatment I had 3 lumps in my left foot measuring 35x45mm, 18mm diameter and 12mm diameter respectively. The largest had developed in just 18 months from approx. 10mm diameter. In the right foot there were 2 lumps measuring 32x38mm and 18x12mm respectively. These had grown at a similar scale and rate as the left foot. Additionally a noticeable tightness had developed in the tendons along the soles - decreasing flexibility on extension. 

Ledderhose RT Results 

It took about 3 weeks for the effects of the first round of treatment to be clearly noticed and this was generally evidenced as a reduction in size and a softening of the lumps. The skin did become dry and I applied moisturiser twice daily. The effects slowly continued over the 8 weeks leading up to the second round of radiotherapy. I viewed these initial results as very positive. 

The second round was completed and within 2 weeks the effects were really beginning to show with a steady reduction in the size of all lumps. The discomfort experienced on walking, standing and at rest was consistently reducing, and the hard cords which had been developing along the soles of both feet had softened and become more flexible, allowing the feet to extend freely when walking. I cannot express the sense of excitement and relief that I felt by late January 2019. This had been a hugely successful result – far beyond the conservative expectations I had at the beginning of the treatment. 

Dr Arunachalam reviewed my situation at the end of January. His observations can be summarised: “Post treatment the patient has had a dramatic response to RT with all his lesions in both feet showing significant reduction in size. In fact, on examination it is very difficult to feel the smaller nodules”. I had experienced minimal side effects during treatment apart from some mild skin irritation and some tenderness. These symptoms had resolved within 2 weeks of the last RT session – in fact I spent several weeks of last summer barefooted on a boat and at the beach. It has become apparent to me that the positive effects of the RT continue for several months after the treatments end. 

As I write this article in August 2019, nearly 9 months since the treatment ended I can summarise my situation. I do have a single residual lump in each foot, each measuring approx 20x22mm. They are quite flat and not particularly noticeable although they can be felt. There is no discomfort when pressure is applied. The soles of both feet are more flexible and the cords softer and less prominent. 

Overall I feel that my Ledderhose symptoms have been reduced by approx 85%. I can walk, stand and run without any discomfort and essentially, on a normal daily basis, I am completely unaware of the minor residual indications of the condition. In this sense I can positively rate the RT treatment as a total success. Whilst the long term efficacy of the RT is not completely known I believe I can optimistically expect to remain untroubled by Ledderhose disease for at least several years – likely even longer. If the condition should reoccur, my specialist advises that a further round of RT treatment is considered both safe and practical. 

Dupuytrens Treatment. 

The first treatment was at the end of February 2019. At this time, in my right hand, I had a noticeable cord running from the palm to base of the thumb where there were the beginnings of 2 small nodes. These indications were accompanied by the usual thickening in the surrounding skin. There was also a large 10mmx15mm sized lump in the web of the hand. There were early signs of 2 nodes on my little finger (which had been skin grafted in 2000). The Dupuytrens in my left hand was more advanced. The skin around the base of the thumb had thickened and there was a knotted cord running from the palm, up the index finger to a 9mm diameter node just below the first joint. There was a large lump measuring approx 10x15x20mm in the web between thumb and forefinger and this caused some restriction to my ability to fully open the gap between thumb and forefinger, and pain on over extension. At the base of the little finger there was an area of noticeably thickened skin measuring approx 20mmx20mm, and from here were 2 cords running up to an 8mm diameter node just below the second joint. These were causing the early stages of contracture. The preparations for treatment and the treatment regime for my hands were the same as for the Ledderhose procedure. 

Dupuytrens RT Results. 

Again it took about 2 weeks for the effects of the first round of treatment to be clearly noticed and this was generally evidenced as a softening of the harder areas of skin. The skin did become dry and I applied moisturiser twice daily which controlled the condition. The effects slowly continued over the 7 weeks leading up to the second round of radiotherapy. By this time some of the lumps had reduced (although not as obviously as with the large Ledderhose lumps) and the restriction between left thumb and forefinger had eased. 

I viewed these as very positive initial results. 

The second round was completed and within 2 weeks the effects were really beginning to show with a steady reduction in the size of the lumps in the webs of both hands – both were about 30% smaller. There was a further easing in the restriction between thumb and forefinger on my left hand which allowed greater extension with reduced discomfort. The large palm thickening at the base of the small finger was significantly reduced in volume with the surrounding skin becoming soft and flexible to the touch. At this stage the 2 nodes on this hand were little affected but there seemed to be a slight softening of the cords in the little finger (an unexpected benefit – although small). The changes in my right hand followed a similar course but I was pleased to see that the 2 small early stage nodes on the little finger had noticeably reduced. 

At the 5 week point both hands began to dry and the skin deeply peeled in varying degrees over most of the treated areas of both hands but particularly where there had been lumps. This was great as it further reduced the apparent size of the lumps. It took about 3 weeks for this process to complete and after that my hands were generally left softer and the skin more flexible, although still somewhat dry – a condition easily remedied with moisturiser. As with the Ledderhose experience, the positive effects of the RT continue for several months after the treatments end. As I write this article in August 2019, nearly seven months since the Dupuytrens treatment ended I can summarise my situation. 

The lump in the web of my left hand has reduced by 60% in volume and that in the right by 80%. I have no noticeable restriction between thumb and forefinger of the left hand; full extension and lifting a load cause no pain. My little finger is less contracted (it is now almost straight). Nodes in the 2 fingers have reduced by about 20%. Areas of thickened and harder skin are all approx. 50% reduced in size and softer. The cord running from palm to index finger is mainly unchanged but subjectively a little more flexible. 

The right hand has continued to follow a similar improvement with the cord mainly unchanged but both nodes in the little finger are now visually indistinguishable. An interesting observation for me now is just how much the Dupuytrens growth seemed to have been more generally spread across the surface layers of the skin on the palms of both hands than I had noticed. The treatment has left the cords in both hands more noticeable to the touch (I guess since the surface layers are now softer and more flexible). 

Overall the results were very positive and although not as dramatic as those for the Ledderhose I would say that all 3 of my initial expectations regarding RT were exceeded. My main hope that the disease progression could be slowed or halted appears to have been realistic and there is good evidence that Dupuytrens responds in this way to RT. I would rate treatment as approx 60% successful in terms of a physical reduction in symptoms but since the residual symptoms are essentially untroubling and visually insignificant this success might well be considered around 75%. 

I am therefore feeling positive that my Dupuytrens progression has been halted - certainly the symptoms I was experiencing have significantly reduced. Although, as with the Ledderhose, there are still some residual physical indicators, generally on a daily basis I would say that I am now unaffected by the disease. 

Summary. 

At the start of this article I laid out the objectives I had for any treatment. The first was to halt the progression of the disease - thus avoiding or postponing the need for immediate surgery. The second was to slow or prevent re-occurrence of symptoms. The third objective was to reduce the effect of these conditions in some practical way - perhaps by reducing the size of lumps, nodes, etc or perhaps reducing the degree of contraction in fingers or toes or by simply softening the skin on palms or soles. The ratings I have given the 2 treatments are based on my original objectives and conservative expectations. 

For me, the radiotherapy treatments I underwent in late 2018 and early 2019 have been hugely successful in delivering significant improvements to the physical symptoms of the diseases, and a corresponding reduction in the mental anxiety that is a real part of watching the progression of these distressing conditions. I have no ongoing side effects or skin dryness issues. This time last year all I could see ahead of me was a round of aggressive foot surgeries which would surely have left me significantly less mobile, if not partially disabled, and a future of more routine surgeries to control the Dupuytrens. As I write this report I feel a great sense of excitement at the very real and positive results of RT and look forward to the strong probability this has halted the progression of the diseases – maybe not forever, but I’ve read a lot of articles and reports which record no noticeable reoccurence of symptoms for periods of more than 6-8 years. 

My understanding is that RT is acknowledged to work best if treatment is given when either Dupuytrens or Ledderhose are in the active growing phase, rather than after cords and contractures have formed. To me this implies that treatment is better sooner than later and that allowing the conditions to progress to advanced stages of growth and contracture (ie to the degree where surgical intervention is normally considered and recommended) would negate the very real benefits that early RT could bring. 

I was advised that there is no risk of damage to underlying tendons or bone and studies have suggested no increased complications with surgery after RT delivered to this dose – if future surgery is needed. From my experience I would urge those who suffer from Dupuytrens disease (palmar fibromatosis) or Ledderhose disease (plantar fibromatosis) to seriously consider the early intervention of Radiotherapy ahead of regular surgical procedures. If your regular GP or surgical specialist is unfamiliar with, or unsupportive of, the use of RT for these conditions I would urge you to “start the conversation” and, if possible, gain their support. If this is not forthcoming then “self refer’ to a Radiotherapy Specialist. 

I hope there are readers who have found this article useful – good luck with your quest. Thanks to Dr Ramesh Arunachalam and to the kind, talented RT team who treated me at Auckland Hospital. 

Disclaimer: This article is the result of my private research and personal experiences – I do not have a medical background. Readers should form their own opinions about RT treatment and ultimately seek advice from a suitable medical professional. 

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.

Climbing Snowdon

Achieved something else I never thought I would today as my wife and I went up and down Snowdon. 

It was not an easy climb and my feet were suffering on the descent as you just have so much pressure going through your feet and I was not wearing the best shoes for going up 1000m climb. Now I am back in the holiday house with some comfortable shoes on I don't feel too bad and certainly my foot which used to be painful doesn't feel bad at all. 

Videos Going up - Groningen 2015

The videos have started to go up from the conference in Groningen in May 2015. The delay was due to different publishing rights etc but this appears to have now been resolved. Happy to say that my presentation is on there and I think I did ok. 

www.dupuytrens.tv

Hahaha it even looks like they call me Dr Gary Manley... So that makes it official right? 

https://www.youtube.com/watch?v=splC4aATa3g

"Dr. Gary Manley "The patient's view: Ledderhose Disease" 2015 Dupuytren Symposium"

The videos make a great resource for patients and doctors as there is such a wealth of knowledge on there. If anyone has any feedback on what they would like to see then get in touch and we can start targeting the next symposium. 

Ledderhose and Dupuytren's detailed radiotherapy interview

To be rewritten by patient due to change in condition

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!

Me on the BBC

Post by BBC South East Today.

Crazy to have been on the BBC today. I hope everyone can watch this and share to help raise awareness of Ledderhose and radiotherapy as a treatment option. Thank you to Dr Shaffer for his bit as well. 

Patient Series - Patient 9 Introduction

Initial Background Questions:

Please state your age, gender, country of origin and where you live (if different to origin) and how long you have had the condition? 

Aged 57, female, England, Scotland, 4 years

Do you have it in both feet or any hands? 

Both feet

Please detail any family history or common risk factors which apply to you:

No family history or common factors that I am aware of

Please list any treatments you have had, the time since you had them, the progress (or lack of) after treatment and any side effects

RT, August and October 2013

No side effects, little improvement over first three months, then aware that nodules had stopped growing, now feel that they are softer and cause less pain.

Please detail any other information from your past which you think may be relevant and not covered in the monthly questions: 

N/A

Monthly Questions:

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

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. 

One or two twinges a week, very little pain

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

Visited podiatrist to request a second pair of insoles. They came back a few days later, the arches are slightly higher than the last pair, but I am sure I will get used to them. 

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 combination of recent improvements (as a result of RT?) and orthotics means the condition has little impact on me. Presently on holiday in the Cairngorms, walking 5 - 8 miles a day. 

Friends 60th birthday party - it does make finding dressy/party shoes difficult. Tend to go straight from sandals into boots.

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.

See above. Been veggie for about 20 years.

Please list any other information that you think would be useful

N/A

Patient Series - Patient 8 Introduction

Initial Background Questions:

Please state your age, gender, country of origin and where you live (if different to origin) and how long you have had the condition?

Age: 62

Female

Born in UK. Live in Blyth, Northumberland.

Do you have it in both feet or any hands?

My lumps appeared suddenly in July 2013. Both feet are affected. Left foot had one lump in centre of arch; right foot the lump is close to ball of foot. The lumps appeared after walking holiday in France. Suspicion that a 7km walk down a steep road after watching the finish of a stage of the Tour de France may have contributed to their appearance!

I had previously suffered from rather stiff toe joints, arch aching and cramps whilst walking and during the night.

I have Dupuytrens in both hands. Very slight pull towards of cord between first and second fingers on both hands.

Please detail any family history or common risk factors which apply to you:

I have thyroid cancer. Have no thyroid gland left and take levothyroxine daily. High dose to inhibit the thyroid stimulating hormone. Ledderhose and Dupuytrens developed since treatment started.

Please list any treatments you have had, the time since you had them, the progress (or lack of) after treatment and any side effects:

Ledderhose diagnosed in November 2013 after ultrasound.

Referred to consultant surgeon. Surgery was dismissed as successful removal was unlikely. Remains an option only as last resort. Cortisone injections were suggested and I have had one injection directly into the lump on my left foot. Found the injecting of the anaesthetic particularly painful. Lump was swollen at first then settled down. No real benefit identified.

Now working with podiatrist. Have had memory foam inserts to inform the making of insoles to support my arch and to correct a slight turn of my foot when walking. Now on third insole. The lump on left foot has grown and new insole will have a gap so that no pressure is put on it. Insoles expected this week. I now have open appointment with the podiatry service. I  can make my own appointment if there is any change.

Please detail any other information from your past which you think may be relevant and not covered in the monthly questions:

N/A

Monthly Questions:

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?

A recent change overnight one nodule changed to two. These two have merged to form a long lump.

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. 

A. The worst pain is the acute pain I feel when I stretch my foot and a stinging tearing sensation is felt, e.g. when attempting to run up stairs or walking in the morning or getting out of bed in the night.

B. Generally I have a medium pain after long walks, shopping etc. lumps feels bruised. Pain is tolerable.

C. General pain is usually an ache or at times a burning sensation during the 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.

I find a foot spa with oils relaxes my feet when I have pain.

Try to start the day with simple stretching exercises by pulling up my toes. Toe joints are quite stiff.

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. 

Ledderhose has impacted on everyday life. Try not to stand for long periods and do not walk as far either whilst shopping or in the outdoors. Always walk with a stick if walking in the hills and this does help relieve some pressure and helps stabilise to the feet.

I can walk for several miles and I do walk the dog daily. I always wear supportive boots or trainers with insoles when I go out. Feet often sore afterwards.

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 follow a low fat diet and this month have had no alcohol.

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