Plantar Fibroma and my experience:

Ok so here is my experience so far with plantar fibromas, any advice or help etc would be fantastic.

Growing up, from around 13, 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 (I was 22yo) out of nowhere 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 my GP had a look at the lump and he then informed me of what I already expected that it was probably a plantar fibroma. I just have one, what I would call, big lump on the left foot though I am sure I can feel some small nodules on the my right foot but I am not sure whether these are the same thing as not, they are not painful and to me feel different to the one in the left foot.

Being a research scientist I was intrigued to see what I could find out about this , so I did some online searches using both Google and 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 something along the lines of that Physio 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 on the NHS? (Correct me if I am wrong, also I have no money to pay for anything more).
So after my research I was quite surprised when the doctor referred me for Physio. At first my parents paid for a private Physio as the NHS appointment was taking so long, 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 physio to help the condition other than suggesting a few stretches but doubted that it would work. I was recommended to get some running trainers to help support my foot and this did help a little for a couple of months but the pain was still bad.

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 a while anyway I went 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 the chances of it growing back are high 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, having done my research I wasn’t sure if it would help but decided to give it a go.

A few months later with little progress in any way I was 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 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 and to take it easy for the rest of the day, and to be fair once the local wore off it was very painful for a day or so.

Over the next few months I did start to notice an improvement and then for about 3 months or so it was ok, not great but much more manageable. Things were good for nearly 6 months in total 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 fiancé, whilst this is of course amazing it does mean more walking and it turned out I had to be rereferred to the specialist as I had been discharged due to an error, then my referral wasn't received and I have an appointment in December (less than 2 weeks now).

The pain is now really bad, I can’t stand for more than a few minutes without taking weight off of that foot, I try to walk as little as possible and it is at the point that if I have weight on my feet I cannot bend the toes on that foot upwards at all, even if I try to force them a little with my hand they don’t go as far as the other foot does without assistance.

Continued below




plantarfibroma.freeforums.org/

Gary, do you take any pain meds for the foot pain or is it something you can tolerate? I can't tell you anything you haven't already read. Surgery would be the very last resort but if you can't walk then it might be time. Who knows, any recurrence might be in location that is tolerated better. Radiation is something to consider as well.

Gary

I have huge nodules on both feet. Nodules and cords on my right hand and knuckle pads on my left hand. Its a very nasty little disease. However, as bad as i have it, i have not experienced the same level and consistent pain that you describe. You must have a nodule that is bearing on a nerve bundle every time you stand.

I am in the middle of my radiation treatment for my feet and right hand. I hope it works.

I never thought i would say this to someone, but if radiation isn't an option, then i think you need to try surgery. Your just in too much pain.

Good luck!

Hi again and thanks again for replying it is just nice to hear from other people,


I was not sure whether the pain I was getting is proportional to what other people have experience but from what you have said it doesn't sound like it is, I don't think I am just bad at coping with pain I really do have problems walking etc I guess it hitting a nerve bundle or something would make sense.

I hope that radiation treatment goes well for you, from what I have read it should help, do you know what sort of dose they give you? I am just interested as I work in cancer research and we often use doses of radiation to look at defects in DNA repair and I was wondering how the doses compare (not that you can really compare cells and tissue but hey) though I am not sure this is the kind of information that they give out? I hear you when you say about surgery but it is nice, well maybe not nice, but interesting to hear that someone else thinks that this might be the right path for me to go down.

I don't think that radiation therapy, as I said, is an approved treatment for those with LD living in the UK and I have not heard of anywhere that does cyro though I will make sure I mention it to the specialist when I go.

Thanks again I really appreciate being able to talk to and get advice from people with the same condition but have had it for longer etc so probably know more about it, even though I am in a fairly good position to find lots out as I have access to a lot of journals.


plantarfibroma.freeforums.org/

Gary,

the typical doses are 20 - 30 Gy, fractioned into 5 - 10 treatments and, specifically in the 30 Gy regime, split into 2 blocks with 15 Gy each and 2-3 months in between. A few hospitals try 15 Gy and, if the the result is sufficient, they don't do the additional 15 Gy, which allows a later second treatment in the same area should need arise. In total no area is exposed to more than 30 Gy.

When evaluating the effect of RT on cells you need to take into account that hand and feet are less sensible than e.g. lung or reproduction/birth related parts of the body. DNA damage is not a major issue with hands and the risk of acquiring cancer by this treatment is fairly low http://www.dupuytren-online.info/radioth...de_effects.html.

Wolfgang

Gary1987:

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I hope that radiation treatment goes well for you, from what I have read it should help, do you know what sort of dose they give you? I am just interested as I work in cancer research and we often use doses of radiation to look at defects in DNA repair and I was wondering how the doses compare (not that you can really compare cells and tissue but hey) though I am not sure this is the kind of information that they give out? ...