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Appears I am developing Dupuytren's and would like to hear from others
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06/27/2009 16:32
Mary 
06/27/2009 16:32
Mary 
Re: Appears I am developing Dupuytren's and would like to hear from others

I too went the radiotherapy route. I live in Worcs, UK and went to Poole in Dorset. I had my second lot of treatment in May. I am very pleased with results, no pain now and the nodules seem very much softer. I have not even had the dry skin that others seem to have as a result of RT. I highly recommend this treatment.

06/28/2009 09:33
KatherineG 
06/28/2009 09:33
KatherineG 
Re: Appears I am developing Dupuytren's and would like to hear from others

Thank you very much Mary.

To everyone interested, I am seeing my own GP on Wednesday this week. He is first class and I do have confidence in him.

Where I have a major concern, is the UK has been very slow to respond to new ideas in medicine and dentistry partly because the NHS is a nationalised industry and because of the history of the UK. A long time ago, Harley Street would have been regarded as the best in the world, so they are often unwilling to travel to another country and learn new ideas.

Reading websites here in the UK, it appears they still favour cutting the hand open and only recently has the British Medical establishment passed N/A, yet it has been used for decades in France and a very long time in the US.

06/28/2009 09:35
KatherineG 
06/28/2009 09:35
KatherineG 
Re: Appears I am developing Dupuytren's and would like to hear from others

Can I ask another question? Mine actually started in October and I thought I had damaged my hand in some way so I left it for a while. Then I found it on the internet and started reading. Is it too late now for RT?

06/28/2009 14:08
Wolfgang

not registered

06/28/2009 14:08
Wolfgang

not registered

Radiotherapy when?

Radiotherapy is most efficient on realitvely new, still growing nodules. It is much less efficient, but still has some effect, on cords. The simple rule is if you have no contrccature yet then radiotherapy is an option.

Wolfgang

Quote:



Can I ask another question? Mine actually started in October and I thought I had damaged my hand in some way so I left it for a while. Then I found it on the internet and started reading. Is it too late now for RT?


06/28/2009 14:26
TrevB 
06/28/2009 14:26
TrevB 

Re: Appears I am developing Dupuytren's and would like to hear from others

Quote:



Can I ask another question? Mine actually started in October and I thought I had damaged my hand in some way so I left it for a while. Then I found it on the internet and started reading. Is it too late now for RT?



Mine developed (without contracture) over 3 years before I had RT so I wouldn't have thought that you're too late.

Cambidgeshire, UK.

06/28/2009 15:05
lori 
06/28/2009 15:05
lori 
Re: Appears I am developing Dupuytren's and would like to hear from others

Hi,

I too started to develop DC back last October. It started with what I thought was a painful callus and by January I had a hard knot in the palm of my hand below the middle finger. I saw the GP who did not know what it was, she referred me to a hand surgeon. By the time I got into see him I had a cord. He said there was no other treatments other than surgery and to come back and see him when my fingers had curled and he would do surgery.

I went on the internet found this site and found an oncologist who will do my radiation. I do not think it has grown since I had a steroid shot in April. The shot was great because it took away the pain and loosened up my hand, and I do not believe I have had any new growth. It calmed me down, because the cord and nodule were growing so rapidly I felt I was racing time and a decision.

I start my radiation treatment on July 6th for a week.

Hope this helps you,

Lori

06/28/2009 21:44
KatherineG 
06/28/2009 21:44
KatherineG 
Re: Appears I am developing Dupuytren's and would like to hear from others

Lori and all,

Yes, you have been very helpful. See what I mean though?

Many hand specialists are only interested in operating after the fingers have contracted. It seems madness to me to allow the disease to develop that far. After all, the cords could be cut before they contract and damage the fingers. I think the world will look back one day in amazement.

The steroid injections sound helpful and RT, I will report back after seeing my GP.

K



06/29/2009 01:51
flojo 
06/29/2009 01:51
flojo 
Re: Appears I am developing Dupuytren's and would like to hear from others

Good points about recommendations to wait until the hand is deformed, then do surgery. I'm sure we can think of lots of analogies. To the extreme, an infection in a toe could be ignored until the whole leg needs to be amputated.

06/29/2009 06:07
wach 

Administrator

06/29/2009 06:07
wach 

Administrator

Re: Appears I am developing Dupuytren's and would like to hear from others

Katherine, there are two reasons why not cutting cords early:

- the cutting of the cord will not solve the problem for ever. It might delay contracture but specifically if you cut it before you have any contracture you won't have a gap between the ends and the odds are that the cord will regenerate quickly. You might consider removing the cord completely but that's a bigger surgery and has other risks.

- surgery might trigger disease extension and aggressive re-growth. So far it's unpredictable to whom that happens, so it's always a risk of any surgery. It might make sense to delay surgery as long as possible though some doctors advocate early excision.

Wolfgang

Quote:



Lori and all,

Yes, you have been very helpful. See what I mean though?

Many hand specialists are only interested in operating after the fingers have contracted. It seems madness to me to allow the disease to develop that far. After all, the cords could be cut before they contract and damage the fingers. I think the world will look back one day in amazement.

The steroid injections sound helpful and RT, I will report back after seeing my GP.

K






06/29/2009 17:58
TRyan

not registered

06/29/2009 17:58
TRyan

not registered

Re: Appears I am developing Dupuytren's and would like to hear from others

Greetings all,

I'm researching the small hard nodules I have in a couple fingers and wonder if I have DC. They are in the ring and middle fingers in the crease between the finger and palm. Definitely not in the palm (base of the finger really), and there is no contracture. I'm a 45 yr old male and of Scandanavian descent. So the symptoms appear to suggest DC. Does anyone else have a similar experience that would indicate this is DC?

Thanks Much!

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