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New Dupuytren in left hand (Toronto) - need help
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04/07/2014 23:30
lebo 
04/07/2014 23:30
lebo 
New Dupuytren in left hand (Toronto) - need help

Hi
I'm male , 42 years old, living in toronto
Doctor diagnoased a dupuytren in left hand, pinky finger ligament
I have a nodule around an inch down from the pinky finger (little to left of straight down)
I can still straighten my finger but do feel tightness to straighten all the way
Doctor sent me to a plastic surgeon who said he would leave it until it starts to contract (told me not to call it a dupuytren contracture, just a dupuytren because it hasnt contracted yet)
He said when it contracts to call him again and it can take between 3 days and 30 years to start, yes, he wasnt very helpful at all, quite arrogant actually.

I want to try get proactive and not wait until it contacts, read about xiaflex but cant find a place in toronto to have it done, is there anyone here from toronto that has had xiaflex? where can i go?

what are the other options? i'd like to fin out options

Should i be seeing a hand surgeon

I'm quite lost and quite sad that this is all going to happen

Any advice would be awesome

Thanks alot
Julian

04/08/2014 00:01
callie 
04/08/2014 00:01
callie 
Re: New Dupuytren in left hand (Toronto) - need help

The information you heard was mostly correct. Everyone is different and Dupuytren's reacts differently with each person. Some people live their entire life without contraction taking place to a degree that requires a procedure. Most likely your situation does not involve a "ligament". It is most likely a Dupuytren's cord. You might have misunderstood, you can have Dupuytren's even though contraction has not started.

Your earliest procedure would be irradiation, but you might be past the window of opportunity for that. Xiaflex may, or may not, be a procedure that would work for you at this time. From your description it may be too early for Xiaflex. Also, you might consider NA (see above under "Treatment") at a later date. Or, you might consider surgery later.

04/08/2014 05:25
wach 

Administrator

04/08/2014 05:25
wach 

Administrator

Re: New Dupuytren in left hand (Toronto) - need help

Welcome to our forum!

Xiaflex or NA are treating contracted fingers making them straight again http://www.dupuytren-online.info/dupuytren_collagenase.html and http://www.dupuytren-online.info/needle_aponeurotomy.html. As you have no contracture both treatments are not suitable. That leaves radiotherapy as the only option right now http://www.dupuytren-online.info/radiation_therapy.html.

Radiotherapy can slow down disease progression but it is not readily available everywhere in Canada http://www.dupuytren-online.info/radiotherapy_clinics.html . Some patients have been travelling even to Germany to get radiotherapy there (Jonn's story on http://www.dupuytren-online.info/dupuytr...xperiences.html). I hope some Canadian on the forum can post more information. You can search the forum yourself for posts ("Search Forum" on the left menu).

Wolfgang

04/08/2014 06:36
spanishbuddha 

Administrator

04/08/2014 06:36
spanishbuddha 

Administrator

Re: New Dupuytren in left hand (Toronto) - need help

Welcome Julian

'Wait and see' is a reasonable option for a doctor to advise, as in many cases the condition quiesces or develops very slowly. You can still be pro-active, as you have started, by exploring and lining up the treatment options, and making lifestyle changes as appropriate. Start a log of the symptoms, hand stretch measurements, and photos so you have an objective status of symptoms to determine how it is or is not progressing and if it is timely for RT.

Best wishes

SB

04/08/2014 09:23
humana 
04/08/2014 09:23
humana 
Re: New Dupuytren in left hand (Toronto) - need help

Re: Radiation Therapy in Ontario
The fax number is 416.946.2900

http://www.theprincessmargaret.ca/en/Hea...rtment.aspx#DRO

'General Referral Form for Radiation Oncology'


Although I did not receive any radiation therapy, everyone at princess Margaret were very kind and helpful. They took their time to listen and explain. No arrogance there!!
My family doctor referred me. Good luck!

Edited 04/08/14 12:24

04/08/2014 10:13
lebo 
04/08/2014 10:13
lebo 
Re: New Dupuytren in left hand (Toronto) - need help

Thanks a lot everyone. Much appreciated

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