Interview with Seph, dual Dupuytren's and Ledderhose surgery patient

Today I have an interview with Seph from the IDS forum who kindly agreed to share her experience with these conditions. One of the few Ledderhose surgery patients who has not had a horrific experience. 

1) Do you have Dupuytren's, Ledderhose or both? How long have you had there conditions and what was your age when diagnosed? 

I have Dupuytren's and Ledderhose. Both bilateral. I first developed LD in my left foot in my early teens. I may have been as young as 10 as I'm sure when it first started but I know I was at junior school. Right foot developed LD in my late teens followed by my left hand and then my right hand in my early 30's. I am now 59. It may be worth noting that I did not know what the issue was or that the feet and hand issues were related until it was properly diagnosed when I was 33

2) Where do you live and do you have a family history of the disease?

 

I was born and grew up in New Zealand but have lived in Australia for the past 25 years. My family heritage is a mixture of Welsh and Scottish with a few Englishmen thrown in. Father had what I now know was DD in one hand, one of two brothers has LD in one foot and one of two sisters DD in one hand. I am not aware of any other relatives with the disease but I haven't seen any of my cousins in years so I wouldn't know if they have developed the disease

3) Would you consider yourself to be at risk based on any of the other risk factors commonly associated with these conditions?

 

I drink wine with dinner nearly every day but that doesn't account for the disease starting in junior school. I have some liver damage caused by a bout of Hepatitis A when I was 6/7. I sometimes wonder if this mimicked the effects of alcoholism and acted as the trigger for me. A few years back I developed bilateral frozen shoulder. My father who was skinny developed diabetes in his 60's and my mother who was obese developed it in her 70's. I am a candidate but don't have it yet and am trying to fend it off through an aggressive Gym and sport program (Gym 3-4 times a week with heavy weights plus tennis 3 times per week)

4) What treatments have you received for

a) Dupuytren's

I had surgery on my left hand when I was 35. It should be noted that the DD in my right hand appeared a couple of years after the surgery on my left hand. No signs off DD in my right hand prior to then. I had NA from Dr Badois in Paris on both hands April 2009 and again on my right hand December 2009. Last year I had NA done by Dr Manet-Chopin in Paris on both hand and she will treat my right hand again next month.

b) Ledderhose

Surgery when I was 13/14 since then nothing.

5) How successful were these treatments?

 

Surgery on my foot did not cause me any problems but the disease returned within months with a broader mass and I wonder if it was the trigger for the disease popping up on my left foot. Surgery on my left hand was moderately successful but I wonder if it was the trigger for the disease then popping up on my right hand. Each time I get NA done I seem to get an immediate burst of DD activity then it settles down again so I get it done again where the action starts and I am right then for a couple of years. I am troubled that of late I am developing a lot more nodules on the palms of my hands and I am wondering if this is triggered by the NA

6) You were treated a while ago, if you were to get treated now would you take the same treatment option? And why?

 

If I could return I would not have the surgery and I would not have waited so long before starting NA. The surgery achieved nothing other than a temporary fix with the scar tissue limiting my future options. Because I waited too long NA was not able to straighten my little finger on my right hand and surgery did not straighten it on my left hand

I do not agree with the people that advocate protecting hands and wearing soft shoes etc. I have found that by pushing through the skin toughens and the nodules settle down. On my feet I went through years where blisters would form in the arches of my feet where the lumps rubbed but the skin did toughen and the pain went away - now no problems. With my hand no special treatment but I have had to thicken the grip on my tennis racquet to avoid cramp caused by DD and in the gym I do now where gloves a lot of the time to reduce the rubbing on new nodules.

Xiapex in the UK, up North this time.

My Day:

So  I shall do the usual trick and talk about my day for a little bit and then go into some news. So my days are not getting any easier, I am still having to make the choice between severe pain from an early point in the day or not getting that much work done (I mainly opt for the getting the work done side and only struggle on the days where it is bad from the time I wake up) and to be honest sometimes I can not even get as much work done as I would like and still be in quite a considerable amount of pain.

Left foot:

Today I again experienced the numbness in the bottom of my left foot, this is something that I think Becky has mentioned having but something that I only experienced for the first time last week. Whether this is further progression of the disease or just some oddity I do not know but I have certainly had it twice in the last week and never before that and my foot has been the most painful it has even been in the last 3 weeks.

Right Foot:

I was also having pain in my right foot again today and this reached its most painful level to date. I am still unsure as to whether this is Ledderhose or perhaps just something like plantar fasciitis caused by the increased strain it is under due to the problems with the other foot. I do now think that I can feel some lumps in my right arch but I am not certain and what I think it the main one or at least seems to be associated with pain is in a slightly different location to the left foot lump and is closer to my heel.

Rough location and guestimation of size of the lumps. 

Xiapex in the North East of England:

It was announced on Monday that there was a reversal on the initial decision on Xiapex (to reject it) and they are now going to put it forward as an option for Dupuytren's in the North East. This sounds good right?

I am not sure it is a simple as all that to be honest as it is only allowed to be used on one joint and it has to be contracted to at least 40 degrees. I am happy that this choice has been reversed and this is a good step towards getting come good clinical data on its effectiveness and how well it is going to work and then maybe it can be considered for Ledderhose patients. 

I mean one of the reasons that they have agreed to do this is because it is cheaper than doing surgery and so it makes sense. I think that when it comes to money Ledderhose must be more expensive than Dupuytren's (though this is a guess) and I am basing this on the fact that I am assuming that because the surgery is on your foot there is more likely to be a long(er) time spent in hospital and recovering that it is going to cost lots of money. 

Plus the fact that (again not really a fact I guess but I am guessing) that scar tissue in the foot is more problematic in the foot than in the hand so surely it makes sense that this should be an earlier option in the foot than surgery. 

Anyway this is the second kind of thing like this for Xiapex for Dupuytren's in the last few weeks and so hopefully progress like this can continue and we can start to see better treatments and better care for patients with Ledderhose disease and Dupuytren's disease. 

An updated Ledderhose story

I thought that it was about time that I updated my story, so here is the whole story, the old stuff is in blue and the new stuff is at the end in black. I have removed some of the details that were in the original post about the science and things as I have now covered that in much more details. For the original post see here.


Plantar Fibroma and my experience: 


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. 


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 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. 


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 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. 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, for me to go to a private Physio. 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. Being skint I needed to see the NHS physio before being put through to the foot specialist, luckily I got one pretty quickly after the above 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. 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. 


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 thrash everyone at badminton again but still in the knowledge that the lump was there it was just more in the background. 


Things were good 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 fiancé, 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 20minute 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 evolved 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). 

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.