Thursday, 8 November 2012

The struggles of a Ledderhose? Patient

So at the moment I am in regular contact with a really nice guy from the UK. He is a Dupuytren's and Ledderhose patient in the UK and is currently trying to get everything sorted. He has done an interview for me which I will probably post in the coming days and then update in the distant future once his troubles are hopefully sorted. Anyway at the moment he is really just seeking a diagnosis of Ledderhose disease and this is how his most recent appointment with a 'specialist'. went, excuse any grammar etc as he has recently had surgery on his Dupuytren;s and so I am sure you can imagine that typing is not easy (I have correct some of it): 

"Hi Gary

Very frustrating business this Thursday. went to see the orthopaedic 'foot' specialist today. it was obvious he was a general orthopaedic consultant from the start. After ten minutes talk I asked about his specialization and got an evasive brush off...........when I mentioned Ledderhose (several times) he looked like i was 'talking in tongues'.........he just stared blank feigning he knew what I was talking about. He seems to think anti-inflammatory gel is the answer.

He pointed out these fibrous nodules in my feet (plantar fascia) were very small (I'm wasting his time) and the Dupuytren's in my hands was not cancerous! All in all my limited knowledge of possible diagnosis superseded his - which is worrying especially as these consultants earn a lot of money and the NHS is strapped for cash. I went to a private hospital paid for by the NHS so I dread to think of the cost.

He asked what I wanted to do! I mentioned physio he agreed - I mentioned orthotics he hopes the physio will refer me - I mentioned radiation he'd never heard of it. On top of that I went to the physio dept and they only deal with post operative all in all..grrrrrrrrrrrrrr

So back to the GP for another referral hopefully with a consultant who has some grasp of feet...........whilst I suspect i have Ledderhose I would gratefully accept another diagnosis from a learned practitioner.

On lighter note...........I'd love to stand bare foot in the snow as one symptom I'm getting is zinging hot feet.

On a much lighter note............thanks for sharing the image of your little 'un.............that must of filled you with much joy........hope your wife is feeling better.

Oh if you like warm feet I have a pair of these.............goose down duvets for the feet: )

peace matey..............john"

This is not the first and I am sure it will not be the last e-mail of this kind that I get, this is why in the British Dupuytren's Society we are (well the others have been and I am starting to help) hoping to be able to help educate all the specialists and although we cannot get them all to learn all the details hopefully we can get the people responsible for the resources that they are likely to look at to update them and therefore the patients will get pointed in the right direction.