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Advice for Florida needed
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02/13/17 05:23
CindyCyrus 
02/13/17 05:23
CindyCyrus 
Advice for Florida needed

Dear all, I live in Fort Myers Florida and am reading how great Dr. Davis must be re. the enzyme therapy.

I have PF / Ledderhose - and as my 2 nodules are slowly growing - and I am basically from Germany here only since 3 years, I am also quite new to it all.

What is the newest experience: To start with Radio Therapy and then add the Enzyme Injections in addition? Add Verapamil to the overall treatment as well? Who has a clear advice for me?

Also: Is there any known specialist in southwest Florida that I could seek help from? I believe Dr. Davis would be the best to directly start off with? Seeking your help.

02/13/17 09:45
wach 

Administrator

02/13/17 09:45
wach 

Administrator

Re: Advice for Florida needed

Hi Cindy,

welcome to our forum!

The experience with collagenase injection of Ledderhose nodules seems to be mixed. In our patient survey of 2015 radiotherapy got the best ratings of all treatments for Ledderhose http://www.dupuytren-online.info/patient_survey.html . Collagenase injection (= Xiaflex) is excluded from the figure on that page because we had received only 4 ratings. 3 of those patients were not satisfied with the outcome after collagenase injection but that doesn't tell much because of the few responses.

Personally I would either have radiotherapy, see what the outcome is (usually it takes 3-6 months until you see an effect) and then decide what to do next. Or, as you don't seem to be troubled by your nodules and as they grow very slowly, you might also just wait and see. The nodules might as well stop growing and even eventually vanish. Unfortunately this is hard to predict. I myself have had two nodules for about 15 years and they never gave me severe trouble, so I had no treatment. The nodules even became smaller after a while.

Wolfgang

02/13/17 22:55
BRIANB 
02/13/17 22:55
BRIANB 
Re: Advice for Florida needed

very interesting study results thanks ...i do not need treatment yet for new cord near thumb...one hand doctor ..told me DO NOT HAVE RADIATION EVER !... Wonder about that advice ...

02/14/17 00:57
CindyCyrus 
02/14/17 00:57
CindyCyrus 
Re: Advice for Florida needed

Very interesting, thank you. How do I find a Radiotherapist in my area? Do you by chance know of anyone in Fort Myers or Naples area? Is there a special link that I can search on for?

02/14/17 08:31
wach 

Administrator

02/14/17 08:31
wach 

Administrator

Re: Advice for Florida needed

It might be useful to first familiarize yourself with the basics of radiotherapy as described on this website
http://www.dupuytren-online.info/radiation_therapy.html

We also provide a - probably incomplete - list of clinics offering RT for Dupuytren and Ledderhose disease
http://www.dupuytren-online.info/radiotherapy_clinics.html

If you are looking for someone closer to your home you might try university hospitals or oncology clinics. They sometimes are familiar with treating Ledderhose disease.

Wolfgang

CindyCyrus:
Very interesting, thank you. How do I find a Radiotherapist in my area? Do you by chance know of anyone in Fort Myers or Naples area? Is there a special link that I can search on for?

02/14/17 08:35
wach 

Administrator

02/14/17 08:35
wach 

Administrator

Re: Advice for Florida needed

Brian, many surgeons are sceptical about radiotherapy. It's probably too far off their area of expertise and that's one of the reasons why the International Dupuytren Society is trying to bridge gaps between faculties
http://dupuytrensymposium.com/program_2015.php.

Wolfgang

BRIANB:
very interesting study results thanks ...i do not need treatment yet for new cord near thumb...one hand doctor ..told me DO NOT HAVE RADIATION EVER !... Wonder about that advice ...

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