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01/02/2018 11:12
Animal 
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01/02/2018 11:12
Animal
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Looking for recommendation UK
Hi,
I just signed up to the forum as looking for some advice please.
I was diagnosed with Dupuytrens around 5 years ago with a small nodule in L palm. I'm a professional orchestral musician (percussionist.) The consultant was dismissive so a while later I sought advice from BAPAM (performing arts medicine in UK) and I saw someone else who gave a steroid injection, helpful in the short term, but never followed up.
Over the last few months things have progressed; I have thickening in my palm, some discomfort and the start of trigger finger, all of which concern me given my career.
Can anyone recommend a specialist in the UK (one who would be empathetic to a musician?) I'm in the NW but willing to travel.
Any advice very welcome, thanks.
Happy New Year!
Animal
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01/02/2018 11:27
Stefan_K. 
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01/02/2018 11:27
Stefan_K.
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Re: Looking for recommendation UK
Hi animal, welcome to the forum. I don't know a local specialist or about trigger finger but if I relied on my hands for a living I would in this DD stage look into radiotherapy before the disease evolves further. Several UK addresses are listed under http://www.dupuytren-online.info/radiotherapy_clinics.html
Stef
[55, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017, night splint glove]
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01/02/2018 12:08
Animal
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01/02/2018 12:08
Animal
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Re: Looking for recommendation UK
Thank you, Stef,
I've thought about radiation as it would appear to be minimally invasive.
Did it work effectively for you?
Thanks,
Animal
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01/02/2018 12:31
Stefan_K.
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01/02/2018 12:31
Stefan_K.
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Re: Looking for recommendation UK
RT is as minimally invasive as it gets, and above all it is the only known way to stop progression before cords or nodules become disabling.
In my right hand I consider the treatment a full success. Several nodules went away. In my left hand the treatment has so far stopped progression in the pinky before it could contract, and between thumb and index finger I am up for the second of the two series this month (another 5 days in a row, in Germany) and the result remains to be seen.
The challenge is to find a specialist experienced in determining when to treat what part of the hand, and not to wait too long.
Stef
[55, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017, night splint glove]
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01/02/2018 17:05
spanishbuddha  Administrator
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01/02/2018 17:05
spanishbuddha Administrator
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Re: Looking for recommendation UK
The British Dupuytren’s Society has a further list of clinics treating DD, including RT both private and on the NHS.
http://dupuytrens-society.org.uk/treatme...-organisations/
As Stefan says RT may be appropriate for you, if the condition is actively progressing, in which case it would best to seek a radiologist who treats DD regularly and can advise accordingly. Usually, in the UK this means going private, even if it’s just because getting RT on the NHS can take a while to get through the bureaucracy.
I play piano, not professionally, and have had RT. It stopped the progression, even though I continue to play tennis and had an injury that promoted new growth.
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01/02/2018 21:31
scumblenot registered
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01/02/2018 21:31
scumblenot registered
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Re: Looking for recommendation UK
Stefan_K.:
RT is as minimally invasive as it gets, and above all it is the only known way to stop progression before cords or nodules become disabling.
In my right hand I consider the treatment a full success. Several nodules went away. In my left hand the treatment has so far stopped progression in the pinky before it could contract, and between thumb and index finger I am up for the second of the two series this month (another 5 days in a row, in Germany) and the result remains to be seen.
The challenge is to find a specialist experienced in determining when to treat what part of the hand, and not to wait too long.
Stef
[55, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017, night splint glove]
Dear Stefan K - spanishbuddha elsewhere suggests that I look for RT in Germany if not the UK. I'm based in South Korea and having realized that RT asap may be my best option am now searching for a specialist here. But I'm also about to consult the lists of German clinics herewith and wonder if I may ask where in Germany you were treated, since you mention the importance of finding someone suitably experienced?
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