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Forum for Dupuytren's and Ledderhose 
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  • Advice please - radiotherapy & epilepsy
    • Advice please - radiotherapy & epilepsy
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    08/06/2012 14:36
    Larry 
    08/06/2012 14:36
    Larry      		Re: Advice please - radiotherapy & epilepsy

    Hi Redhed

    I can recommend Prof. Seegenschmiedt as a diligent physician who is very knowledgable about all risk factors including epilepsy; he will help you to get the correct treatment according to your actual stage. As I have been a former patient of him I can send you his E-mail address which is mhs@szhh.info

    Good luck and success, Larry
    08/11/2012 23:07
    RedHed 
    08/11/2012 23:07
    RedHed 

    		Re: Advice please - radiotherapy & epilepsy

    Thanks to everyone who has responded to my post

    I emailed Prof S with all my info and photos of my hands, but think I`ve just missed him if August is his holiday month. Hopefully I will hear soon.

    Because of my cancer and lymph nodes removed from my right axilla, doubt if surgery or any type of "open" treatment would be considered on that side anyway, and possibly not even RT.

    Researching this I came across interesting info regarding the role of the liver (weakened) in producing collagen type iii. My ears pricked up - I know that I have raised alkaline phosphatase (ALP) levels in my liver because a blood test last year threw all the docs into a mad panic as it can be caused by bone metastases.

    I had every possible scan, including a full body bone scan, but thankfully nothing was found except the raised ALP again. This was then attributed to the effect of my anti-convulsants on my liver - and I think that is the connection. Its not the drugs themselves that cause the DD, but the effect that they have on the liver!

    I feel quite positive about this as it is something I can tackle - improve my liver health any way that I can, and just maybe the nodules and cords (which are growing apace) will shrink

    08/12/2012 12:17
    aryan 
    08/12/2012 12:17
    aryan      		Re: radiotherapy and breast cancer

    Hi RedHed

    I had breast cancer 11 years ago with removal of all lymph nodes from left axilla plus chemo and radiotherapy after surgery. I have dupuytrens on both hands but with no contraction.

    I decided on the RT option and had my first week of radiotherapy with Dr Shaffer at the Royal Surrey County hospital in Guildford last month. I too was worried about more RT especially for a non malignant disease, but so far so good - no lymphoedema and no ill effects and no progression of the Dupuytrens. The nodules are still there but they seem softer and less irritated. My second week of treatment is in September and I'm hopeful it will really 'do the trick'

    Dr Shaffer gave me a free consultation. I think he knows his stuff and he was very reassuring so you would lose nothing in booking a consultation. His website is www.dupuytrens-radiotherapy.co.uk and email sue.verschoyle@bmihealthcare.co.uk

    Good luck with whatever you decide and the liver theory is interesting.

    Aryan
    08/12/2012 14:11
    Lanod 
    08/12/2012 14:11
    Lanod      		Re: Advice please - radiotherapy & epilepsy

    Dear RH,

    Yes - Dr. Shaffer has a great reputation. He quoted me as follows (per hand) earlier this year. I went to another RT doctor in the end as I do not live in the UK and my insurance would not extend to the UK jurisdiction.

    "The charges are:

    1. Initial consultation (in Guildford or Elstree) = STR£150 ( some say he might waive this consultation charge..)

    2. Treatment
    a. In Guildford = £1750 per hand
    b. Elsewhere (Elstree, Portsmouth, Southampton, Birmingham) = £3000 per hand

    Contact details:
    Guildford (Sue or Jackie) - 01483-442786
    Elstree (Kelly) - 0208-236-9040"


    Very best wishes for a successful treatment - in whatever way you may proceed!
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