| UK treatment of Dupytrens using radiation |
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03/06/2009 18:59
Mary 
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03/06/2009 18:59
Mary
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Re: UK treatment of Dupytrens using radiation
I have just received a date for my first lot of treatment, I have to be there on 13th March, next Friday. I have been madly trying to find accommodation for myself, husband, dog and grandson. I think I have found somewhere near to Lulworth cove, we thought we would make a holiday of it. My nerves are off already.
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03/06/2009 19:21
TrevB 
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03/06/2009 19:21
TrevB
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Re: UK treatment of Dupytrens using radiation
Good news Mary. I'm a basket case and have returned home today after my second week of treatment. There's nothing at all to worry about. You find where you need to go in Poole hospital. You get called in and the staff spend a minute or two lining up your hand. You stand there for 45ish seconds while it buzzes away without you feeling anything and then it's see you tomorrow. That's it basically and nothing whatsoever to worry about.
I imagine that that's a planning meeting on Friday and treatment starting the 16th 
Hope that you have better weather than me. This is a 1/4 mile from the hospital on Thursday morning (was a lovely afternoon and Friday morning  ), seemed a shame to leave as it was lovely on the quay.
Cambidgeshire, UK.
Edited 03/07/09 09:46
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03/25/2009 10:23
Mary
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03/25/2009 10:23
Mary
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Re: UK treatment of Dupytrens using radiation
Hi, I returned from Poole on Friday of last week. I have not noticed any change so far, not even dry skin. Return for my second lot of treatment on 4th May. Look forward to hearing of the progress of those who had this treatment a while ago.
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03/25/2009 14:58
TrevB
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03/25/2009 14:58
TrevB
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Re: UK treatment of Dupytrens using radiation
Quote:
Hi, I returned from Poole on Friday of last week. I have not noticed any change so far, not even dry skin. Return for my second lot of treatment on 4th May. Look forward to hearing of the progress of those who had this treatment a while ago.
The one thing that you'll perhaps get fed up with Mary is people saying that it doesn't look much different if you show it to them. I don't think that it's supposed to be instant, it's a long-term project. The only small problem that I've had is on the webbing between thumb and forefinger. That area was particularly dry before treatment started and I did get a bit of sunburn type irritation during the first treatment. I've just had a major peel in that area and the underlying scheme feels particularly smooth and thin. Oh I forgot, there is one more. The crease between little finger and palm is also quite dry and hard. I think I'll have to keep moisturising for a while to help these two areas but apart from that it's basically fingers crossed.
Cambidgeshire, UK.
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03/25/2009 17:21
Gweneth 
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03/25/2009 17:21
Gweneth
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Re: UK treatment of Dupytrens using radiation
I had my left hand and foot treatment at the start of February. I have actually had a couple of people comment that my left hand opens flatter than it was prior to the treatment. I have not really noticed much difference in the cords, but the two major nodes have flattened. I have also noticed less issue with the skin dryness in the last several weeks, and I live in a very dry climate. Plus I have less pulling when typing, which was a noticeable difference to me within the first week. All in all I am happy so far, and will be going back to Scripps in May to have my right and and foot treated.
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04/05/2009 15:52
Mary
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04/05/2009 15:52
Mary
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Re: UK treatment of Dupytrens using radiation
Great news, the pain has lessened. I have been crocheting for the last week or so and I only had a little pain after several hours of non stop activity.
The nodules seem a little flatter too. No dry skin to speak of yet. I go for my next lot of treatment at the beginning of May.
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09/04/2009 09:07
dave.g
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09/04/2009 09:07
dave.g
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Re: UK treatment of Dupytrens using radiation
Phil
I am unable to get radiation treatment locally (Liverpool) and therefore contacted Poole, unfortunately the doctor who provides the radiation treatment is on long-term sick leave and they do not if / when he will return. I am considering other options - e.g. Germany, but before taking it any further would be interested to know what your evaluation of your treatment is - one year since your last message?
dave.g
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10/19/2009 14:14
philwaite 
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10/19/2009 14:14
philwaite
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Re: UK treatment of Dupytrens using radiation
First of all, really sorry for the long delay in answering.
I have been waiting for contact with Poole Hospital & have today received a final reply.
1. Very unfortunately, I can confirm that the Poole based expert Dr Goode is away from work due to ill health and there is currently no planned date for his return. I am sure that you will join me in wishing him well.
As a result, all of his Dupuytren appointments are cancelled (mine included) for the foreseeable future.
2. I understand that a lady consultant, with a practice in a Carlisle based hospital was taking patients but that she was working somehow in conjunction with Dr Goode. Clearly, this contact/opportunity may now also be unavailable. If anyone has further information please share!
3. In order to try & find a new contact, I spoke to the Assistant Project Manager at NICE today. I had hoped, that following her survey looking into Radiation therapy for Dupuytren’s Contracture, that she would be in a good position to let us know of any other running services. Unfortunately she can't help (she is not an expert & runs the 'gathering of information from patients' only).
So, it looks like the UK has lost (hopefully only temporarily) a significant & valuable radiation partner.
Does anyone know of any other UK based consultant for this type of treatment?
On the optimistic side, NICE is due to publish it's findings approx mid February 2010.
Fingers crossed that this will inject some vitality back into this extremely promising treatment.
Phil
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11/08/2009 20:30
TrevB
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11/08/2009 20:30
TrevB
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Re: UK treatment of Dupytrens using radiation
My October appointment was cancelled as well. I would imagine that working at the centre would be rather stressful, so hopefully he recovers in the not too distant future.
This treatment for Dups should be freely available to all. I was watching my nodules growing and wondering how long before a visit to the surgeon would be required but 10 months on from radiotherapy and the results are looking very good.
My understanding is that it’s not a particularly difficult procedure for experienced staff with the appropriate equipment? I would imagine that many UK hospitals meet the criteria. I wonder how many, if any, use radiotherapy for benign disease? Perhaps it’s worth those of us who had the treatment contacting our local hospitals to ask if they would consider treating Dups patients 
Cambidgeshire, UK.
Edited 11/08/09 22:32
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