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12/17/2012 13:21
dottyhand 
12/17/2012 13:21
dottyhand 
Hi

Hello just signed in today and hope to learn lots on here.

I am 44 years old I have agressive dupuytrens in my left hand. I am waiting to have surgery / skin graft in the new year. I am not keen to get this done and have been looking into RT... I have had a private consultation and the RT will cost £1,700. ouch

Does anyone know on here if I can get the treatment on the NHS and if I can get referred. I have been trying to get hold on my hand surgeon and have left number of messages and still not reply, Please can you give me a list of hospitals that can help.

Many thanks
Dottyhand

12/17/2012 14:26
alcook101 
12/17/2012 14:26
alcook101 
Re: Hi

welcome to the forum

I had radiotherapy in Hamburg this year, travelling out from Slough, UK.

I saved about £ 1,000 by going to Hamburg including travel + hotel.

I had 2 hands treated. The savings won't be as much with just one hand, but worth looking into.

Al

12/17/2012 14:33
callie 
12/17/2012 14:33
callie 
Re: Hi

Dottyhand, the problem is that if you are far enough along to have surgery, it is most likely too late for RT. RT will not reverse the contracture or have an effect on the cord.

What is your present condition? What fingers and degree of contraction? I had surgery eleven years ago and my hand is still as good as pre-Dupuytren's. I had very little pain associated with the whole process.

12/17/2012 14:50
spanishbuddha 

Administrator

12/17/2012 14:50
spanishbuddha 

Administrator

Re: Hi

Welcome to the forum Dottyhand.

Sounds like you are in the UK? There is an incomplete list of doctors/surgeons providing treatment on/off the NHS on the BDS website http://dupuytrens-society.org.uk/TLinks.html.

There are some hospitals doing RT occasionally on the NHS, but they are not listed here because as you may expect the equipment and radiologists are very busy treating malignant cancers. Nonetheless you could and should ask your local former PCT or forthcoming PCG.

But, as callie says, treatment choice and options does depend on the stage of contracture of your hand and its overall condition with nodules and cords.

12/17/2012 15:23
dottyhand 
12/17/2012 15:23
dottyhand 
Re: Hi

Hi and thank you for your replies. My contracture measures between 5 /10 I believe once it gets to 10 RT cannot be done. I know RT won't straighten or get rid of the nodules but I wish to stop it progressing.
I am put off the operation because I cannot afford to give up work, I don't have any cover. Plus the op still carries its risks.
Dottyhand

12/17/2012 15:54
callie 
12/17/2012 15:54
callie 
Re: Hi

I would put off the surgery, also. That is too early for surgery in my opinion. Surgery is most often recommended for contracture between 30 and 50 degrees. One of the reasons is that many people never reach 30-50 degrees contracture.

12/17/2012 16:55
spanishbuddha 

Administrator

12/17/2012 16:55
spanishbuddha 

Administrator

Re: Hi

Xiapex and NA are available on the NHS. Xiapex not yet approved in all regions, but you are entitled to a referral outside your own local PCT/CG.

As callie says I would investigate NA or Xiapex to straighten contracture if you need or want that done now, at this stage, and/or investigate your options for RT.

A skin graft fasciectomy sounds like you have an overly enthusiastic surgeon and based on this hearsay I would find another consultant.

12/17/2012 17:01
alcook101 
12/17/2012 17:01
alcook101 
Re: Hi

Hi Dottythand

By co-incidence this afternoon I took a scan of my left hand (on my old PC scanner) two months after final treatment and posted on the web page.

http://www.pushpullsigns.com/dupuytrensradiotherapy.html

The nodules are much smaller/flater in the middle of my left hand and on my right hand. They are still there - just shrunk down.

Is the 5 degrees contracture on one finger or several fingers?

Al

12/17/2012 17:26
dottyhand 
12/17/2012 17:26
dottyhand 
Re: Hi

Cannot click on the link

I have contracture in two fingers.. middle and ring finger, I have 3 large nodules in the palm.. also I have lumpy flesh on the palm end of my fingers.

12/17/2012 18:08
alcook101 
12/17/2012 18:08
alcook101 
Re: Hi

dottyhand:
Cannot click on the link

I have contracture in two fingers.. middle and ring finger, I have 3 large nodules in the palm.. also I have lumpy flesh on the palm end of my fingers.

Does it work if you go via the menu above ?

"Patients" - "Personal Experiences" -
(Alastair, from the UK, gives a detailed account of his RT his trip arrangements on...)

Wolfgang was discussing "time since first noticed" on another thread. Have you been aware of the dupuytrens a long time?

Al

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