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Ledderhose expertise, Sweden, Stockholm - Sundsvall?
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08/06/2014 10:58
slyporks 
08/06/2014 10:58
slyporks 

Ledderhose expertise, Sweden, Stockholm - Sundsvall?

Hi,

Been a while since I logged in / posted. I am really impressed with the work that you do with the Society for so many years, thanks for all the hard work!

I have previously had dupytrens in one finger on left hand, in the end needing a skin graft. Currently have a contracture on right hand which has been treated successfuly with Xiapex, but which has reverted to the same or worse condition, going to see the doctor at in Stockholm soon about this.

But, maybe more of an issue, I seem to be developing a nodule on my foot now which causes mild pain when walking depending on the shoes I am wearing. Does anyone have recommendations about clinics in Sweden ( in Stockholm or towards Sundsvall) that treat Ledderhose with the latest techniques?

I am a bit concerned that he places I find through research seem to have surgeons that may be a bit knife happy, and from what I read on the internet surgery is maybe not the alternative I want to start with.

Appreciate any info.

If anyone in Sweden would like to know about my experience with Dupytren and Xiapex and the clinic i visited, let me know.

/John.

08/06/2014 14:19
wach 

Administrator

08/06/2014 14:19
wach 

Administrator

Re: Ledderhose expertise, Sweden, Stockholm - Sundsvall?

Hi John,

welcome back! The issue with Ledderhose is

a) there are no specialists for Ledderhose

b) there is no really good treatment for Ledderhose http://www.dupuytren-online.info/ledderhose_therapies.html

Surgery is often not recommended because the disease can come back soon and fiercer. Total fasciectomy is said to have less recurrence, or rather a longer recurrence period, but then you might have other side effects, e.g. problems with the stability of your foot.

Xiapex might become a means some day but for the time being trials are just starting and it has not been approved for Ledderhse anywhere in the world. Results of off-label use seem to be mixed.

As your nodule just has started to grow and is active, radiotherapy might be an option. I don' tknow whether RT is available in Sweden but you might have it treated in Germany. Seegenschmiedt at Hamburg might be the closest http://www.dupuytren-online.info/radiotherapy_clinics.html . He has published on RT of Ledderhose http://link.springer.com/chapter/10.1007...?LI=true#page-1.

For Dupuytren's the Situation is better. Stephan Wilbrand at Uppsala University is an expert in Dupuytren's.

Wolfgang

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Seegenschmiedt   expertise   Sundsvall   techniques   University   recommendations   fasciectomy   specialists   contracture   Stockholm   radiotherapy   Appreciate   recurrence   successfuly   experience   Ledderhose   alternative   recommended   dupuytren-online   previously