Monday, 14 November 2011

Plantar Fibroma - a real pain in the foot

Plantar Fibroma and my experience: (posted 14/11/2011, Updated 26/07/2012, April 2013, October 2013, August 2015:

This is a relatively unknown disease that can be painful and debilitating; here I am going to tell you my story and as yet unsuccessful attempts to alleviate the problem. 

In the Beginning:

Growing up I was sure I had a little bump in the arch of my foot but there was no pain, no growth and nothing to be concerned about, then two years ago out of nowhere like the little menace that it is it started to grow and started to become really painful. I headed off to the doctors as it was starting to interrupt with my daily life and this was not good enough. My GP has a look at the lump and annoyingly decided that it needed to be prodded which of course just made it more painful. He had a look in a book to confirm his suspicions and then informed me of what I already expected that it was probably a plantar fibroma.

A plantar fibroma is a benign tumour that forms in the arch of your foot. I think a good way of thinking of it is basically that you have a marble stuck in the middle of the arch of your foot and it is like stepping on that all day. 

Seeing the GP:

Being a research scientist I was intrigued to see what I could find out about this nasty little thing, so I did some online searches using both just Google but also Pubmed to look for research articles on the condition. Now this was a few years ago so I can't remember all of the details but basically I found that Physiotherapy can't help, surgery can't help as it just grows back most of the time, steroid injections might help but might make it worse and that there are several other types of treatment but that are not available in the UK (well at least not on the NHS). 

So after my research I was quite surprised when the doctor referred me for Physio.... I waited for an appointment and then I waited some more, I was in so much pain that I decided, as my parents said they'd pay, to go to a private physiotherapist. I went along and explained what I had, she was very experienced and very helpful, but said that in all of her years she had only come across one other case and that there is no known way for physiotherapy to help the condition. Being a student (which means little money) I needed to see the NHS physio before being put through to the foot specialist, luckily I got one pretty quickly after the above private appointment as I said I was happy to see a student physio, they told me the same thing as the private one and sent me on my way. I did learn from the private physio that it would be best to invest in a good pair of running trainers and wear them all the time and this did help decrease the pain to some degree. 


I was getting pretty stressed at this point, my foot was killing me, there wasn't and if I am honest still isn't really a step in the day where I don't feel it, and many times I can just be lying in bed and it will twinge and I'll be in a lot of pain for 30 seconds or so....

The specialist appointment 1:

Anyway I was finally going to see the foot specialist to get answers. I went along and they said pretty much what I already knew, if I was to have surgery (let's face it if you hear tumour you do think surgery) the chances of it growing back are very very high and in all likelihood it is going to come back faster and harder and meaner and it really is a last resort, they were nice however and said that maybe at this point the best option would be to try an ultrasound guided steroid injection into the fibroma. 

The steroid injection:

A few months later... with little progress in any way I was lying on a bed waiting for the injection, I had been told that I would require local anaesthetic otherwise the injection would be incredibly painful, well the local was really really painful but the steroid injection just felt like some liquid surrounding the lump. I was told to avoid sport for a few weeks but otherwise I should be ok, well I stupidly decided to head off to the lab, not realising that I was only pain free because of the local, a few hours later that wore off and I was in a lot of pain and couldn't walk and had to be picked up and taken home. 

Around the same time as this I started to do a lot of cycling, with my weight being a potential issue and pretty much any other form of exercise out of the question due to the foot pain and it was working, I began to lose weight. Now whether it was the weight loss or whether it was the steroid injection that helped I don't know but over the coming months the pain began to subside, I was able to play badminton again but still in the knowledge that the lump was there, it was just more in the background. 

After some relief it comes back:

Things were good (well compared to how it was) for nearly a year and then it all started again, I started to get increasing pain in my foot, increasing twinges and more and more depressed about it. A few things had changed over that year, I was no longer living with my parents but was living with my fiancĂ©, whilst this is of course amazing it does mean I don't really have easy access to cycling and it turned out I had to be rereferred to the specialist as I had been discharged, then my referral wasn't received and I have an appointment in December. 

The pain now is at a point where I can't give a 20 minute presentation without requiring a seat, not only that but the condition has progressed to the point where if I have had a busy day on my feet I cannot bend the toes on my left foot up as the tendon in the bottom of my foot where the lump is located becomes too tight. 

The problem with this thing is that I now don't walk properly, my foot is twisted so that I walk on the outside of my foot to stop weight from going through the lump, whilst this is a good thing it causes other pains as this is not how we are meant to walk. I think as a result of this and increased weight bearing on the other leg I now have Achilles tendonopathy (or tendonitis depending on who you see) which means I now have problems in both legs, luckily the Physio can help with the ankle and it seems to be working (but that's another story). 

Along the course of this journey I have learnt a lot of things and really wanted to share my experience in case there is someone else out there with this who thinks they are the only one or who might have some helpful advice. 

The science stuff: 

I thought I would put a little bit about the science at the end, mainly because this is my area of expertise, as previously mentioned I work in a research lab on cancer research and therefore have access to a lot more resources and articles than most people with this nasty condition. This is just my experience and my opinion and I am not a medical doctor so it's just my opinion. 

What is a plantar Fibroma? 

A plantar fibroma is a thickening of the plantar fascia that results in nodules in the arch of the foot, these are normally high in collagen and it is thought that over-expression of collagen causes a build-up and that this is the main content of the lump. 

How do Plantar Fibroma's occur? 

It is not really known how they occur but it is thought that they can be hereditary but another theory is that it is a response of the body to damage, in order to recover from some damage or trauma it tries to repair but over repairs and just keeps on repairing until too much tissue is present and this forms the lump. However in very rare cases the lump can be caused by cancer so it is worth getting it checked out. 

Why do they grow back? 

As far as I was aware it was not until earlier this year as to why these things are so pesky and grow back after surgical removal. Wang et al , see here , showed that tissue from fibromas have stems cells present, this means that they are able to proliferate and make more tissue and they also showed that stems cells are not present in normal healthy tissue where fibromas are not present. They also showed a drug that can be used to stop progression of the disease, this hopefully suggests that their research might led to development of a cure or at least some kind of treatment to help anyone unfortunate enough to have it. The morphology of these lumps is also very similar to scar tissue so surgery gives more scar tissue and therefore more foundations for the lumps to start.  

Are there any related conditions? 

I thought I would also like to include a bit of information saying that there are a couple of other disease linked to this, one is present in the wrist and results in basically the same condition but of course with much less pain due to most people not bearing weight on their hands but all your weight does go through your feet and this is the main cause of the pain. 

Summary: 

Plantar Fibromatosis is a sometimes painful condition that causes growth of lump(s) in your feet, as these develop they can be incredibly painful and cause stiffening of the toes. There is research going on in this area and hopefully some sort of help will come soon. There is no cure and very little awareness. 

Don't forget that you can all help by donating your stories with these conditions or money to the BDS, by clicking the +1 Google button near the top on the right hand side, going to the Facebook page and hitting like, following on Twitter or leaving a comment here / e-mailing me, all are appreciated.  

 The picture was taken in May 2012.  




The updates: 


Second update: 

Right so onto the new stuff. So not that long after I made the above I made the trip back to the specialist and whilst the appointment was not that great as the guy was very unhelpful and was even suggesting that I may have something different I was then sent for both an MRI to confirm the diagnosis and also for orthotics to see if they could help my condition. 

So firstly onto the orthotics. The appointment for this was really good and the guy seemed to know what he was talking about and I had all the prep done and they were sent off to be made. I was quite optimistic about these for several reasons. The signs were good as the best trainers for me were the ones with most support which prior to getting the Orthotics were running trainers. The running trainers are great but they are not warm in the winter, not dry in the winter and are very expensive when you are wearing them all day every day. The orthotics arrived and I instantly took to them, I was ill with the flu at the time so managed to wear them in gradually although still quicker than recommended. At first these seemed to help but also coincided with me spending less time and with my wedding and honeymoon which of course was the most wonderful and relaxing 2 weeks of my life. 

In the few weeks since I have been back from the honeymoon the foot pain has intensified and I am starting to reach the edge of my limit and I either have to choose to have an unproductive day and risk not finishing my PhD or have a productive day and be in pain that I am not going to be able to cope with for the remainder and this is kind of the dilemma I find myself in at the moment. 

Right though back to the MRI. Not much to say about the MRI. The actual process was very simple and easy, I went along and stuck my foot in a machine and then waited a couple of weeks for an appointment to discuss it with the foot specialist. This appointment was much more successful that the first but was with the boss rather than one of the not so clever people. The man had lots of interesting points but was told that until I basically cannot walk that surgery is not an option but it remains my only option. But the MRI did confirm that it was Ledderhose disease so at least we knew what we were tackling. 

In the past 6 months or so since I made this post lots has happened and not just me getting married and my foot getting worse. I am also much more open about my foot with lots of people and I am getting lots more support from my wife, my family, my in-laws and my friends (you all know who you are). This has led to me seeking new ideas and new hope as to where I should go next. 

For starts I now have a foot spa and heated slippers which help ease the pain for a short time but that is better than nothing. I have a stall for the kitchen which helps me keep up with the house work and a walking stick for when it gets really bad. All these things help but do not take away the immense pain that I feel in my foot. This pain sometimes comes first thing and is normally present by midday and always there by 3pm and is really excruciating at the moment. 

I no longer feel that I am a one lump person. I am getting a lot of pain down near my toes on my left foot and I am worried that there maybe a lump at the base of my second toe as this area in particular is very tender to the touch. I also think I am developing the same problem in my right foot, I have started to get the occasional pain that I got when it all started in my right foot and am worried that it is now bilateral. 

This has led to me looking into lots of different treatment options and there are others out there that are not on the NHS. I am currently looking in radiotherapy as my next choice as I have interviewed several patients that have had success with this option and also have been looking at Xiapex which appears to be coming to the UK (in Devon for Dupuytren's at least). 

So I guess at the moment I am in a job that makes my foot very painful as there is lots of standing and I am in a place where my next treatment is either going to have to be costly due to the NHS not providing it or surgery which I have been told to avoid by so many people I hardly consider it an option.

So time for another update:

Right last time I left things where I was in a job where I was in constant and increasing pain and I was deciding whether to get radiotherapy. As anyone who visits here often will know I have now gone with radiotherapy and I have completed my treatment and have been keeping everyone posted as to whether things gets better or not. 

But since last time I updated this "story", a post that I only put up on 27th March, so say 3 months ago, things had gotten much worse. I was practically unable to walk at times and as such I had to take the sad but necessary step of leaving my PhD because the pain caused by the increased standing and walking was just too much to keep going.  Luckily through fund raising and generous families we got enough money together for me to get radiotherapy. 


Me getting radiotherapy
I went for radiotherapy as it is painless, has a good chance of working and doesn't require any down time other than the week you need to have it done. I went with Dr Shaffer and the UK for several reasons. One was cost, to get radiotherapy done in Germany would have been much cheaper had I needed several hands and feet done but I only needed the one and therefore with the cost of travelling it worked out cheaper to get it done in the UK and this cost was about £2000.

The choice of Dr was quite easy for me, I only found two in the local area and Dr Shaffer agreed to give a free consultation very quickly and with no fuss I was on my way to see him. The appointment with him was very good, we went through my symptoms and any risk factors that I might have and it was agreed that I was in a good position to have radiotherapy although of course with the risk of cancer it is always better to be having this radiotherapy done later in life rather than earlier. 

I was then very quickly given the radiotherapy appointment which I attended and everything went really well. In the middle of this time Dr Shaffer agreed to do an interview for this blog on radiotherapy for treating Dupuytren's and Ledderhose which has lots of detail and is very interesting to read. On the final week before my second week of radiotherapy I started to see some improvement beyond the tanning I had seen before as I started to see almost no pain at rest and a decrease in the size of the lump and this was confirmed in my second consultation with Dr Shaffer. This second week went really well and I have continued to notice more improvements with me now having much less pain when walking and it just remains for the pain when standing to disappear and I will consider the radiotherapy very much a success as long as it doesn't come back for some time to come or ideally never. 

So at the moment I am in a good place in terms of my treatment and progress and I am getting lots of nice e-mails and comments on how useful and appreciated this blog is. Though hopefully this will be the end of my Ledderhose story I am going to continue to question professionals, patients and scientists for answers and see where it can it can us. 

Update - April 2013: 

My foot has continued to improve massively, I have not used the stick this year and I am regularly playing badminton and have started the podcasts I found on the NHS website to get me running 5k. I hope that others find treatment that is as successful as radiotherapy has thus far been for me. 

Update October 2013:

I thought that it was about time I updated this post again. The main difference from last time is an improved confidence. The walking stick has not even been thought about this year and I am now running properly, in fact I have already run many 5km runs and I am doing my second 10km run next month. My foot is hardly hurting, even after the runs, in fact the impact of the condition on my life continues to decrease and hopefully this will not change. Radiotherapy is not the only option but it is the option that has worked for me. I am continuing to up date the blog with information and trying to find out as many ways as I can to help patients and spread the word. 


Thank you to every who has raised funds, run a few miles (or walked), who has commented on here, has helped in real life and especially to the one person who has had to put up with all of this the most, my wife



Update August 2015:

I have not updated my main post in nearly 2 years, now it has hit the 100 comments mark I feel that it is probably a worthwhile thing to do. A lot has happened in those 2 years even if the state of my foot has not changed greatly.

Firstly I started a low carb diet in late 2014 and have noticed that the residual pain I had in my foot has more or less gone, accompanied with this life-style I have experienced a massive (7 stone) decrease in weight and this has obviously taken a massive amount of strain off of the foot. Whether it was the weight of the low-carb that has helped I am not sure but to be honest I do think that the decrease in the remaining twinges and aches began before I had lost a significant amount of weight. The distance I have come can be seen in the fact I can run 10 miles + with my daughter in a buggy and have no problems and even play badminton the next day.

In terms of this blog the number of posts has diminished but the number of interactions through Facebook and e-mail has increased. I think the core data is now available and so it is mostly a case of updating it, improving it and interacting with patients. In search of more information we have conducted a patient survey which I went to present the results of at the International Dupuytren’s Symposium in May. This was a fantastic experience and hopefully many doctors will have taken on the information I provided and I know for a fact that I learnt a lot. The doctors do care about the patient welfare and not just where there next lot of funding it going to come from but it is a lack of information and understanding of all the options that can hold them back. After all they may feel that surgery is an ok option so why consider radiotherapy.

I have also managed to raise the profile of the condition by appearing in several local newspapers and on the local BBC news channel. I have to say that I was surprised by the success of appearing on local TV. The story only appeared once but I have contacting by a lot of patients who had seen it and wanted to know more not only about my story but also about the treatment I received. I am very grateful that the BBC put it on but also for everyone who comes to the blog and thanks me, they give me the confidence to put myself out there as I know that the blog has helped so many people.

For me the biggest change is in the running. I was running in 2013 but this basically stopped for a year, I guess because it felt like a lot of work and a risk. Now though I do not feel it is a risk and I am really enjoying my running, in fact according to my WAVA ranking (% time compared to world record) I would now actually be considered as “local class” as supposed to unclassified. Most of my running is gentle but in 2013 I was running 2-3 times a week and not great distances, I am now running between 3-5 times a week depending on my schedule and run up to 30 miles a week at the moment. I am in training for my first ½ marathon and fully intend to tackle a full marathon in the future. I am also considering starting a blog along the lines of plantar fibroma running in order to log my running achievements. I am enjoying my running and really want to share this but this blog is not the right place for that.

Anyway I am always looking to build bridges and extend the blog in any way I can, if you have any information you would like to see on the blog or think that there is a chance to work together then let me know. Just remember that like a lot of people that do great things for these conditions (thinking IDS, BDS etc) we do this in our spare time for no profit. You can donate money if you are so inclined (just get in touch or visit BDS/IDS) but ideas, plans or even pointing out a typo are all great ways you can help. Becoming a member of the BDS or using Give as you Live are fairly simply and helpful things you can do as well.

Thank you for visiting the blog and for reading, if you want more information then please ask either by leaving a comment or sending me an e-mail.   

Below is a video of the presentation I gave at the International Dupytren's Symposium in 2015.


29 comments:

  1. I believe I also have Plantar Fibroma on both feet but my right foot is the worse. Initially they did not cause any problem but in the last few years they have grown and now I find it difficult to wear my orthotics so instead wear very supportive footwear. My Doctors do not know what I have so this is why I am reasearching it. My cousin has the same thing and has been operated on twice. He said it is an inherited disease. Lately, I find my feet are sore when I first stand up. I am very athetic for my age of 61 so this is starting to annoy me. Hopefully, they won't develop further since the outcome does not look promising.

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  2. Hi Karen,

    Thanks for leaving a comment. I'm sorry to here that you have this disease. The fact that both you and your cousin have it certainly makes it sound like it is genetic in your case. I hope that yours stay in their current state, if you want to talk about it be sure to join the forum and stay in contact on here.

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  3. is it possible to have on on the corner of your heel where it meets the arch of your foot? I have been noticing a rather large lump on my foot for quite some time now and have noticed that it is very tough, in the past few weeks i have had some twinging that went away almost as soon as it started, but about three days ago it started to hurt really bad and the pain won't go away, but it still has the occasional twinge that feels like i'm being stabbed in the foot. The pain is now constant weather i am walking on it or not and i am finding it very difficult to walk.

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  4. As far as I am aware it is possible for the lump to develop anywhere in the Plantar Fascia which is the tendon that runs across the bottom of your foot from your heel to your toes, if it is on that then it could be a plantar fibroma, there are also heel spurs if it is on the heel but I don't know much about them.

    The pain that you have does sound similar to how it was for me when it was really bad, the chances are it is digging into a nerve or something like that, remember I am not a doctor but what helped a bit with the pain but had loads of side effects for me was amitriptyline (If you use the search box on the blog you can find all posts I made about it). It sounds like it is still active so radiotherapy might be worth investigating.

    If you would like more help then please comment here or e-mail me / post on the forum. Sorry that the response was slow this time but I changed the settings and was not informed there was an e-mail but that should be fixed now.

    All the best and I hope things improve for you.

    Gary

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  5. I was just diagnosed with it in both feet and have had it for over 20 years now along with plantar faciitis and morton's toe among other things. I 110% feel your pain. I can touch it and it absolutely feels like it is bruised inside my foot and they actually prevent me from being able to use arch supports to correct other problems I have with my feet, because of how tender they are to the touch. I am also starting to have similar symptoms in my hands as well. I think I may need to go back to the doc to see if it may be Dupuytren contracture. Oh, God I hope not...

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    1. I hope you find some relief And that it is something other than Dupuytren's. You say you've had it for 20 years how painful is it and how has it progressed in this time?

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  6. Hi! Just foind your very interesting blog while researching plantar fibroma myself. I just had my mri done today and am going to get fitted for orthotics this weekend. My podiatrist also started me on topical verapamil. I read a bit about this and it sounds like it works for some people to shring the tumor. Wondered if you had tried that at all?
    My pain is like someone is holding a match up to my foot. Very painful!
    Melissa
    Pittsburgh, PA

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    Replies
    1. Hi Melissa,

      Thanks for getting in touch. Good luck with the orthotics they certainly help even if they can't really take the pain away.

      I have not used it (don't think it is so commonly used in the UK) but I have spoken to several people that have, I even remember one person who I think said it worked for them in the feet but not on their hands so it can even vary on a single patient.

      Yeah the pain really sucks, luckily mine has really started to clear up after radiotherapy, after standing for 5 minutes it really hurts and after I have been walking the whole of the bottom of my foot hurts rather than the lump but this might be because I need new orthotics which I should be getting soon (it doesn't hurt whilst walking though).

      All the best,

      Gary

      Good luck with it

      Delete
  7. Wow! I thought I was alone! I have a fibroma on my right arch that makes walking almost impossible some days. The pain can be awful one day, then livable the next. I am also having significant pain in my Achilles tendon. I wonder if it is related to the fibroma. My biggest fear us rupture of the tendon. Any idea if that is possible?
    Thanks so much for your blog. I almost cried when I found it!
    Jen Wong

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    1. Hi Jen,

      You are certainly not the only one as you get tell from the blog and from the interviews, although it seems we are quite a rare breed and most Doctors don't really know what to do with us.

      Pain in your achilles could be linked, I actually get pain in the achilles of the ankle in the non-fibroma foot probably because of over-weight bearing on it to compensate for the fibroma.

      I am not a doctor but I have not heard of an increased rate of tendon rupture in Ledderhose patients so I guess you have as much chance of rupturing as anyone else.

      I would recommend to try and see a physiotherapist for the achilles, if it is tendonitis / tendonopathy then I was recommended to do heel drops, hurts a lot but does help if you keep it up (though don't just do them from my recommendation).

      I hope you have more liveable days than bad days and can find something that helps you. If you have more questions then just ask either in e-mail, commenting or on the forum (or all 3)

      All the best

      Gary

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  8. Hi Gary,

    This is a great website and blog. I am a middle-aged Scottish female living in London and I have plantar fibromatosis nodules on the arches of both feet. They are not currently causing me pain but from time to time I feel twinges and a kind of stiffness in my feet. I think the trigger was probably too much walking in flat pumps in 2007-2008. Regarding diagnosis; In 2008 I went to my GP with a lump on the arch of my right foot and, having first researched this, told him I thought I had plantar fibromatosis. As he hadn't heard of it, he told me it was a ganglion cyst. He sent me for a scan to prove I was wrong. However I was right. Within a few months a lump also formed in the arch of my left foot. The GP sent me to UCH for further investigation. They gave me an orthotic and exercises. The orthotic wasn't useful and the physio admitted the doctors didn't know if the exercises would have any effect. They confirmed that surgery was definitely out for the reasons you state on your site. When I asked the UCH doctors about the German radiotherapy treatment they told me that I should be careful about going down this path as irreversible skin changes could occur. I then read that the Federal Drugs Agency in the US was about to license a collagenase enzyme treatment. That looked promising but I thought I'd let the US doctors practice for a few years before getting in touch. However, having read about your experience, it looks as though the radiotherapy treatment might be effective. I am glad to know that UK doctors are now offering this and so a trip to Germany is not the only option. I was also interested to read on your site that there may be a calcium connection. The NHS encourage people of my age group to take calcium supplements - but I have heard that, for several reasons, free-flowing calcium supplements in the system may not be the best way forward and that taking high doses of D3 is a much better way of encouraging calcium absorption from food sources. The other thing I came across was that many cases of Dupuytren's Contracture and Plantar Fibromatosis appear to have a Viking origin. (Google Vikings and Plantar Fibromatosis) Because of this, and the calcium connection, I am now beginning to wonder if lack of D3 in the connective tissues may be a contributory factor in the formation of the nodules. (Northern Europe = lack of sunlight = lack of D3) However I cannot find any research on this and so it remains purely speculative.

    I hope very much that your feet continue to recover. Thanks for running this site.

    Best wishes

    Maureen

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    Replies
    1. Hi Maureen,

      Thank you for getting in touch and glad you like the blog.

      I will have to try to look into the research that you have mentioned and see if I can find anything.

      All the best

      Gary

      Delete
  9. Not sure if this is the right place to post this, but this is my story. About 2 months ago I discovered a lump on the arch of my right foot, not painful at all. After reading all here, I think I'll just leave it alone for as long as possible and hope it never progresses in pain or size.

    I have had plantar faciitis to varying degrees in either or both feet off and on for about 20 years, have some arthritis in some toes (I'm 68), had a 3-day bout of possible gout in big toe of right foot about 4 years ago--toe and surrounding area guite swollen, red and painful, had to keep it raised, and the slightest touch was incredibly painful. Dr gave me decreasing doses of steroid for 5 days, and it went away, with only occasional twinges since.

    I also have arthritis in other areas, and fibromyalgia which my information research finds can be a result of physical trauma--roleover car accident, falling onto concrete from about 10 ft, and lots of horse riding accidents.

    I'm retired, and, with the pain and fatigue of fibromyalgia, don't go out much, so I'm not on my feet excessively and am usually wearing comfy soft slippers. Perhaps then the plantar fibroma will just stay as it is.

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    Replies
    1. Hi Kathleen,

      It is fine to put it here or e-mail me or use the forum, thank you for the comment but sorry that it means you have this condition.

      I hope that the condition does not progress too much for you and hopefully you will not need any treatment, if you ever have any questions then feel free to ask.

      All the best.

      Delete
  10. Hello I have this on both feet and wrist. Dr has not been able to do anything but misdiagnosed and give exercises to do. I had a steroid injection on my left foot, this hurt so very bad, but only helped for about two months. It has returned with a vengeance, much bigger, more painful, hot and whole foot is inflamed. I have lumps (bible cysts) in both wrist. I have had two back surgeries failed due to excessive scar tissue built up (fibrosis) and walk in pain daily. I don't know what to say to my doctors to get them to listen, pt doesn't work, orthotics don't work, pain meds don't work... I am glad I came across this blog I really thought I was going nuts. I look forward to continued reading and learning. ..

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    1. Hi Sandy,

      I am sorry to hear about you condition, let me know if you have any questions and I will do what I can to answer. The steroid injections do hurt a lot and do only tend to help for a short time, I hope you find a specialist and a treatment that works for you. Is it worth looking into radiotherapy? It worked well for me and I guess for you it avoids cutting you open so should mean there is not chance of the excessive scar tissue build up, anyway as I said feel free to ask questions.

      All the best,

      Gary

      (Remember you should always listen to medical professionals, I am not one but a lot of them know very little about this condition)

      Delete
  11. HI,
    I am having a soft tissue ultrasound this week. I believe the lump I have is plantars fibroma but we will see. I noticed it last week when I felt an odd vibration in the bottom of my foot...on for about three seconds...off for about three seconds. I actually thought a bug was in my bed and crawling on my foot. I woke up to the same sensation and took a look at the bottom of my foot...a lump on my arch. I have suffered from plantars fasciitis in the same foot. But this vibration!!! I can't sleep. Is it blood gushing through the lump...is it a nerve being squished. Help!!!

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    Replies
    1. Hi SJP,

      They used an ultrasound to look at mine although that was in the process of the steroid injection and that hurt (the ultrasound is harmless though). The condition appears differently in different individuals and it maybe that for you it feels like vibrations, as you have suggested it is likely that this means it is hitting a nerve, if you have any questions then feel free to ask, e-mail is probably the easiest way.

      Thanks

      Gary

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  12. I started off with one in my left foot, small and not sore... even with exercise... then another grew in my right arch... they both got bigger... still only real sore if prodded or stood on directly...

    They kept growing... due to what I presume stress on them having to work on my feet.

    5 yrs later I have 2 in the left and 3 in the right foot, the biggest being the size of a grape...

    What I have learned over the years...

    - it's either hereditary, caused by some trauma in the area, and can be linked to liver disease and alcohol abuse... or a combination of both...
    - in many cases sufferers can develop Dupuytren contraction too and vice versa and in men a rarer link to Peyronies...
    - surgery does not work it only comes back worse and quickly (for this reason I have not had surgery)
    -many sufferers have a common denominator in that they have or still do work long hrs on their feet.
    -Ventropil (sic) 15% gel does not work, not backed by governments and exceptionally expensive... however it can be replicated as compound clinics for cheaper.
    - there has been some hype about a forum posters remedy he came up with... I have not tried it... and if one was to believe forums a few people have tried it with success... personally I find it hard to believe...

    Here it is all the same...

    He said he rubbed Vit E oil onto his lumps until it was absorbed, then deap heat and covered with a plaster... this he continued daily for ages (as well as rubbing his foot on a heat massager)... he swears after a few months they shrunk and then eventually disappeared...

    To sum up... the affliction is more common than many think... I have not found a remedy and too scared to tempt fate with surgery after reading scores of nightmare stories...

    I'm interested to see how radiotherapy goes for you... fortunately you only have a small one and it hasn't spread as it does for most...

    Keep up the good work... my post was more getting things off my chest rather offering any cure...

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  13. Hi Just happened across this site and read your blog with a mixture of dismay and relief in that you are the first person to describe my symptoms, but sadly offer no miracle cure.
    My story is that my foot pain sort of got lost for a year or so due to the back pain and subsequent surgery which I suspect was a result of the original foot pain.
    I think I first became aware of a lump in my foot after stepping down off a ladder. It felt as if I had stepped onto a stone almost as if it was bruised; only after a couple of days when I really looked at it, I noticed a lump the size of a marble in the arch of my foot. Cutting a long story short, about the same time I began experiencing severe back and sciatic pain and despite pain meds, lumbar injections, physio etc etc, I ended up having major surgery on my back. All the while, the lump on my arch kept growing. Some days it hurt more than others but caompared to my back, it was nothing. After the surgery, the back pain went but I was left with nerve damage to my foot. The same foot with the lump. By now the doctors had noticed the lump, thought it was suspicious and sent me off for an MRI. Before I knew it, I was being whisked in to have the 'tumor' removed. Hmmm! 18 months on and I now have not one but half a dozen lumps surrounding the scar. I have tried physio, insoles, rest, exercise and have reached the conclusion that nothing really helps. I can't say I am in extreme pain, but I have difficulty sleeping as I am constantly aware of my foot. The nerve damage has affected the flexibility in the foot as well as the initial condition.
    I am convinced that there is / was a link between my back problem and my foot. I suspect that the way I compensated for the foot being uncomfortable somehow affected my gait and causing me to damage my disc. And now this week to my horror, I have discovered a lump on the arch of my other foot........!
    I am beginning to wonder what the future will hold for me in terms of mobility. I have to say, I am not overweight, I exercise every day, walk, often wear sensible shoes nowadays( unfortunately). I would love to find out if my experience is totally unique and whether anyone else has had back/sciatic problems that they feel are connected.

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    1. Hi.

      Thank you for getting in touch, sorry to hear about your story and the all too common problem of people wanting to operate without telling you all of the options, it is as far as I am aware a known fact that surgery is not a good option, really not a good option.

      You have not said where you are based, (I checked your profile and it says UK) I would recommend looking in to Radiotherapy and seeing what you think about it, if you have any questions do not hesitate to e-mail me. For me radiotherapy has thus far been an amazing help and made the world of difference.

      I suffered from hip pain etc with my foot and I would not be surprised to find that a lot of people with this condition suffer from various different problems with hips, knees and backs etc as they try to compensate for this condition.

      Like you I tried physio, I tried insoles (which after radiotherapy are helping the stability of my foot and my gait therefore decreasing other problems), I tried steroid injections, I tried laying in bed doing nothing and looked into all the options and did a lot of research and although I had to pay (well funded by my family) I am in no doubt that radiotherapy was the right option for me but I have also been told that my response to it has been very good.

      I wish you lots of luck in finding some treatment for you and should you want to chat about it or anything then as I have said please e-mail me and I am happy to talk.

      All the best,

      Gary

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  14. I have a tiny lump on one foot that I first noticed last summer. There was no pain nor really any kind of sensation to it until about two months ago. Now I am aware of it. It is not painful, not even tender, but there is an awareness. I haven't seen anyone about it, I have just done a bunch of googling. I came across one "cure" that I found on a site..... It is similar to the one oz saffa wrote about on this blog on January 23. The guy claimed it took about 6 months, but his lump shrunk and went away.

    Twice a day he rubbed vitamin E oil followed by Vicksburg vapor rub and then covered with a bandaid.

    I'm two weeks into trying this. I don't have anything to report. The lump seems to have not changed in size, nor in the sensation that I feel.

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    1. Thanks for your post.

      I have heard of this "cure" and see no reason why it should work. I actually found that rubbing vapor rub into mine made it worse, I also saw it and thought why not try.

      I am not really aware of anyone else trying it but you could have a look on the international Dupuytren's Society forum and there might be more on there.

      Please keep me updated on your progress should it work or if you change and go for another treatment.

      Hopefully it doesn't start to hurt.

      Gary

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    2. Also meant to say that the posts will not show straight away as there have been MANY spam posts and so I have to moderate each post, sorry for any confusion.

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  15. To finish my post, has anyone else heard of this treatment? I would like to hear comments from others about this? For instance, is there any logical reason why this would work? I'm trying it, because it seems harmless, it is inexpensive, and I want to do something.

    Thanks in advance for the anticipated comments.

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  16. Please help - any advice on what to do will be gratefully accepted!

    I have plantar fibromatosis in my left foot. I am not kidding when I tell you it grew over a weekend! I used to love foot rubs (my significant other spoils me) but in one weekend, that all changed.

    I have a rather large bump in the arch of my foot that is growing and not slowing down. I went to a CT scan and the GP was able to diagnose it as PF. Now, in the opposite foot I seem to have gout. It is swollen/red but not on my big toe-but under my two toes closest to my big toe.

    So now, I have the following:
    Plantar Fibromatosis left foot, gout right foot, bunion and taylor's bunion - right foot. I am struggling just to walk and I am in a great deal of pain. I am a 59 y.o. woman with fibromyalgia.

    Please, anything you can suggest would be of help! I cannot see a specialist until August of 2014! I just cannot imagine how I will handle a wait this long without some assistance.

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    1. It would probably be better if you e-mail me.

      The NHS is rubbish for this condition, I had to go private, I did and I got radiotherapy and now I am playing badminton and have started jogging, my foot improved within months and although this is not the case for everyone I have heard from many patients who have been aided greatly by RT.

      You do have to get it done privately and will probably have to travel to the London area.

      You can try 1) Getting steroid shots, 2) Orthotics (I saw you posted on that, they did help me but only for a couple of months) and um well there isn't a huge amount else.

      Would be best to continue this by e-mail.

      Please get in touch again, hopefully we can find something to help.

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  17. I had my ultrasound today to check on a blood clot and was concerned that a lump that suddenly appeared virtually overnight was the clot moving. Good news, it wasn't..... bad news, the clot was still there........ and the initially reassuring news,the new lump was plantar fibromatosis. The chap who did the ultrasound suggested I go home and research it when I told him he'd confirmed what my doctor thought and she said it would be simple to just cut it out!!!!!!!! I am going to buy that guy a gift for suggesting I do some research! Can't wait to hear what my doctor suggests at tomorrow's appointment. I am a 52 year old Australian woman and work as a barmaid so it doesn't sound promising. And I was worried about a clot!!!!!!!! Hopefully they can just strip that vein as its not a very healthy one anyway. Sounds like this other lump might be a fair bit more problematic. So far it's just a pea size lump in my right arch that hurts after it's been pushed on. Will pass on any alternative suggestions that the Australian medical experts come up with. My son lives in the UK and sent me the link about fm.

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    1. Best of luck Sharon,

      I have heard of people getting radiotherapy in Australia but worth checking their protocol (if you went that route) as I do know of one Australian not having a good time of it after RT in a way I have not heard from anyone in Europe.

      Please keep my updated and any questions then feel free to comment here, on the forum or drop me an e-mail (shown at the top on the right).

      Cheers,

      Gary

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