Monday, 30 January 2012

Yey it is Ledderhose, I mean... um ....oh

So today was the day of the big appointment and the day that I would find out if I am in the rare but amazing group of people that suffer from Ledderhose aka plantar fibromas. It was a long wait for me to get the answer to that question but before I go into details I will say that yes I do have Ledderhose.

So to start the story out I was at work and things were hectic and I had to walk quickly to make my train, my train that was taking me to another station to get another train because the NHS put me in a foot clinic that is 40 minutes away rather than the one that is ten minutes away? Anyway I then had to get a taxi and is it me or are they getting expensive I was only in the thing for 5 minutes and had to pay £5 which seems a bit over the top to me.   

I got there in plenty of time as I hate being late and didn’t want to miss this appointment and have to wait ages for another one. I arrived at 12pm with the appointment at 12:10pm. Well the appointment time came and went and then so did 1pm and there were still a lot of people sitting around with slots before me so I knew it was going to be a late one. Come 2pm I was called in and was quite annoyed at this point and then still sat in a room waiting for him to come in and I could see him checking the MRI.

Well he came in and said to explain what was wrong. I went through it all and he basically felt the lump and said “yes that is Ledderhose” I had mixed emotions at that point. I was thinking YES I was right and your stupid assistant (this time I saw the top dog, see here for last time) was wrong and treated me rubbish for no reason but I also though NOOO because it could have been something easier to  treat and then I would be fine. This guy however made some interesting points:
  • That as I am younger there is more chance of it regressing naturally and just going away and he actually knows a case (a colleagues son) who had the condition at a young age, it went away and went on to do ballet. 
  •  He said that there was thickening and the lump and that he is not surprised that my toes don’t move when the last guy didn’t seem to have a clue as to why my toes don’t move.
  •  He knew his facts and figures and said re-occurrence with lump removal is 60%, whole fascia is 10% but has complications etc etc.
  • That there is no point in me having surgery at the moment and probably not any time soon as there is the chance of it going away and until I can’t walk the risks are not worth taking.
  • That he is hopeful about the orthotics especially as I think I am seeing some difference after only having them a few weeks and honestly I do think that they are helping.
  • He was aware of the other diseases and asked me early on if I had lumps in my hands or any other places which he wouldn't go into (I am happy to say I do not). 
  • He also had an opinion on steroid injections, this implies that he has seen enough of this to form an opinion on whether they were good or not. He thinks they do nothing. 

I think that this guy was great, he really seemed to know what he was talking about and had treated the disease before. He knew what the risks were and what to say and really seemed to appreciate that I had done proper research and knew a little a lot of what we was talking about. In fact the only thing that I was not aware of was the regression for younger people and I think that might be good news for me and is a HUGE reason to stay away from surgery as I got the impression that after surgery the chances of it regressing if it reoccurs are much slimmer. 

Overall I am happy that I now know for sure what it is, however at the same time it is annoying that it is this pesky thing. Right now I know for sure that this is what it is it must be time to think about Rare disease day, it is less than a month and only the rather important matter of my wedding is in the middle of that.