No. I did have an appointment booked with him, and then cancelled, deciding to go to Hamburg instead. I didn't want to waste his time, so I never got to meet him.

Certainly he seems to have gone to some effort with his website.

Apart from cost, my concern with treatment in the UK was the risk of being undertreated. I'd had my hands and feet examined by a different UK radiation centre (not Mr Shaffer) and their view on my hands and feet turned out to be different to Prof S. I think being able to fully diagnose this disease requires a high level of skill and training to accurately analyse the full extent of the nodules and cords.

By co-incidence I was on the phone to Sue, his secretary, this morning asking if she had received an email I'd sent her last week about Prof Seegenschmiedt.

Prof Seegenschmiedt had mentioned an interest about communication with specialists between his practice in Germany and the UK. The UK has max of 17 months experience with Dupuytrens Radiotherapy with NICE approval only in Nov 2010, the Germans have 25-30 years plus. There could be some benefit in some sort of partnerships.

My preference would have been to have treatment in the UK, but we all have to make our individual assessments of specialist experience and of course cost.

I'd be interested to hear about what the lead shield looked like/size and what the consultation process was etc when you have finished.

Edited 06/26/12 18:23

A UK patient with Ledderhose has blogged about his treatment by Doctor Shaffer http://ledderhose.blogspot.co.uk/search?...p;by-date=false

Thanks for all that info Garry. I hope your Ledderhose improves with the next week of treatment. I'm glad you had a good experience with Dr Shaffer and staff. I'll report back how I get on. Its great to have the support of this wonderful website!

Best of luck to you Gary.......and thanks for the effort you have put in on your blog......I am sure it will help the people who come after us.....

Gazza

alcook101:

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I've recently updated Wikipedia with the Seegenschmiedt Radiation Protocol (or what people refer to as the "German Protocol".)

It's a small jpeg with the title "Radiation Concept" in blue in the Radiation Therapy section.

This is the format that Prof Seegenschmiedt uses for both Dupuytrens and Ledderhose.

Gary and Gary please could you have a look at the Wikipedia page and let me know how it compares to what you have been emailed by Dr Shafer. If possible I'd like to update the page I've put together with this information.

Edited 07/01/12 18:34