The so called specialist appointment!

So today was the day of the specialists appointment with the NHS to see what they thought. Well it was quite clear that this lump was getting bigger and they seemed to understand that the pain was getting worse and that they only thing that they could offer me was surgery and surgery was all that they could offer.

Needless to say I made it quite clear that for me surgery on my plantar fibroma is not an option, at least not untl I have exhausted many more options. I then explained to him what the options were, they are radiotherapy and collagenase injections. He said that both he and the main man were unaware of anyone doing it in the area and that it was still considered experimental. In fact I can say for sure that both my wife and I knew more about this than they did and they are supposed to be the specialists. Then again what does that mean? I was also in contact again with Henry Orton from the British Dupuytren's society where he handed out some of the leaflets I have available on the resources page. Here is a little quote from the e-mail that he sent me:

"Interestingly of about 100 chiropodists or podiatrists in the audience, when I asked, only about half a dozen had heard of or encountered Ledderhose (Plantar Fibromatosis)..."


So as you can see from the above just because someone knows feet they do not know this rare and frustrating disease. What the appointment today showed me was that I am now my own specialist and I am having to make decisions that are going to cost money and influence my health, potentially for the rest of my life based on the research that I have done, what the British Dupuytren's society share with me and what I hear about on the awesome forum - Dupuytren-Online. I am looking into radiotherapy both here in the Uk and in Germany so that I can compare total cost for both, going on what I have been told Germany is £500 plus about £200 for flights and £300 for somewhere to stay and probably another £100 on food and other expenses. The UK, I have been told, is £2000, which depending on location will either include travels costs to get there each day which will likely cost in excess of £50 or again somewhere to stay for the week and food if it is too far away to stay at home. You do the maths!

So I am left hunting radiotherapy, I am left still in pain (though I do have co-codamol now which knocks me out so is only good for home use but seems to help a bit with the pain), I am left trying to raise money and awareness so that we can tackle this disease, so that other people in the future have better guidance and treatment with this disease.

Actually I would like to correct the above as there are so many people, most of all my wife, who are supporting me so much.... So we are left hunting radiotherapy, we are left coping with the pain, we are left trying to raise money and awareness so that we can tackle this disease, so that other people in the future have better guidance and treatment with this disease.

To use the phrase I heard I think from Rare disease day, or it was at least something similar, "together we stand strong".