I have been diagnosed with Dupuytrens by my doctor and having read many references on the web I am sure he is correct.
He asked me to put my hands together flat as if praying, there was no problem with this as there is no apparent contracture yet. He takes the line that I should wait till the measured finger bend is about 30 degrees when he will refer me for treatment at a local hospital for surgery as below. He did not mention any other treatment.
Having read about the possiblity of radiotherapy I am considering my next approach and wonder whether I should write a polite letter to my doctor asking for a consultation with a radiographer.
Warrington Hospital as far as I know only has an X-ray department for diagnostics ie. broken bones
I am thinking that the Clatterbridge Hospital which has a radiotherapy department specialising in oncology radiotherapy should have the correct equipment but would they use it to treat a non cancer patient? This hospital is not far away and people in Warrington with Cancer are sent there but it is in a different trust for Wirral Hospitals
Has anybody been refused the treatment outright and what reasons were given.
Any advice experiences positive or negative appreciated? I see that Nice are investigating this but unlikely to come up with a report for six months or more. Thanks Ian
Personally (but it's only my opinion) I'd watch and wait but in the meantime investigate whether you can find anyone willing to carry out the procedure in the UK (now that Poole seems off the radar) should you require the treatment in the future. I had my treatment this time last year, although I'd watched and waited for 3 years, and my diseased palm has most certainly regressed when it looked like contraction was not too far off.
The picture of my marked had after consultation at Poole Hospital may help in your efforts? I had full palm radiotherapy because my GP said that Dr Goode had said that we get one shot at this. I would imagine that time and resources within the NHS don't allow for a piecemeal approach based on further progression
Thanks for your advice Trev, It seems that the disease is spreading quite quickly at the moment as I now have two addidional small lumps and the larger one has grown If I put my hands down with full weight on a table the left affected had is painfull and I cannot lift my 2nd digit up in relation to the others, I have therefore made enquiries with a clinic in Hamburg and will make a final decision after seeing my GP again in a few days time. The surgery called and asked me to make a further appointment with my GP regarding my recent letter in which I said that I was interested in being referred to a radiotherapist.
Would be interested in anybodies comments on my situation?
Sounds like your window of opportunity is narrowing and that the disease is active, If you want to go this route then make it your no1 priority to get yourself sorted and don't delay. If you have to badger people then so be it it's your health that's important.
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