Sunday, 15 April 2012

An interview with myself, Ledderhose patient

Ok so I thought I am asking all of these patients to do an interview for me why don't I do the same thing and interview myself, please if you have any questions then add them as I would like to help out as many people as possible. I have done this in part because the story that I have posted about my Ledderhose is very long and some people might find this easier to digest. 

1) How long have you had Ledderhose disease?

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 and a half years ago out of nowhere it started to grow and started to become really painful, the pain has gradually started to increase more in the past few months and this has coincided with a further increase in the lump.

2)  Do you have a family history of Ledderhose disease? Do you have any of the increased risk factors?

I do not have a family history of this disease and I have asked as far back as my grandparents who do not know of anyone in my family suffering from this disease. Of the risk factors I am aware of I am not at risk at all, I do not smoke or drink and I do not have diabetes or epilepsy. See my family tree below for all the evidence you need that I don't have a family history.

3)  What treatments have you had so far? How did you find them and did they help?

I have had a steroid injection and I have orthoitcs. 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. Post injection I would recommend staying off of your feet for a few days if possible as it is very painful after the numbness caused by the local goes away. I think this helped me for a few months but it was fairly ineffective as it still hurt but not as much and it didn't last.

As I said I have also been given custom made orthotics, these helped for a couple of weeks but this coincided with me being off of my feet more so again it is hard to tell.

Update 27-08-2012 - I have now had radiotherapy and so far so good. 

4) What do you consider your next step and why?

I think that the next step for me is radiotherapy, it has had good results and I want to avoid surgery as many people have become much worse post surgery and as far as I can tell radiotherapy is at the very least a good pre-surgery measure and is worth trying if you can get it. At the moment I am most likely going to get this done in the UK because I do not have much money and this seems to be the cheaper option although the main guy in Germany probably does have more experience. 

Update 27-08-2012 - My family and friends worked together to raise the money for me to get radiotherapy. My condition is improving and hopefully I will be back to normal by the start of next year. 

5) What other options have you come across? 

As I said I don't think of surgery as an option. Other things out there do include collagenase injections. At the moment these are aimed mostly at Dupuytren's as they are designed to attack the collagen type in the cords rather than the nodules and in Ledderhose the main disease tissue is nodules. Other than that I have not seen much out there though I have heard of people having cryosurgery, NAC treatment, chemotherapy and a couple of other little things. 

 6) What is the worst pain that you have experienced with this disease? Have you found anything that helps?

I have once had it so bad that I was not able to walk from the bedroom to the bathroom without crying because of the pain, at the moment this has only happened once and I hope it stays that way. As for things that helped, I have been given Co-codamol which does help somewhat with the pain but makes me very tired and sleepy so it is not really an option I can use at work and so far no other pain killers including dicofenac and the standard ones have helped. I have also found that heat helps a little or at least takes my mind off of it so I have a water spa which is therapeutic even if the pain relief it offers only last for the 20minutes I keep my feet in there. I have also got some microwave slippers, these also help a little but my feet get very hot in them and I can't use them for too long. I have also found that taking weight off of my feet helps, I know some find exercise helps (or at least doesn't hinder) but this is not the case for me so I also have a walking stick to try and take the pressure off of my foot when it gets bad. 

I have also found that talking about it and letting others know what you are going through helps as they might offer to do things to help keep you off of your feet and if you can help raise awareness then we might increase the likelihood of something being done.   

Finally a picture of my ledderhose. It doesn't look like much and I have seen worse.