| Lost password
106 users onlineYou are not loggend in.  Login
New here!
 1 2
 1 2
05/05/20 03:18
jazb 
05/05/20 03:18
jazb 
New here!

Well I was just diagnosed this morning. Good times!! I have an early stage it seems. One nodule in my left hand that’s been there for about a year. I am male and about to be 44. It seems that when I started cycling a lot more last year the nodule developed which initially I thought was a callus. Didn’t go away over the winter so knew there was a problem.

I’m in Ontario, Canada and it seems that in this province the standard is to be referred to a plastic surgeon who provides treatment.

My GP says they can just inject the nodule with a drug that dissolves the nodule (I assume she was taking about Xiaflex), but after much reading seems like that not the treatment for nodules.

Anyone else in Ontario that had experience with treatment?

05/05/20 03:51
Prof.Seegenschmiedt 
05/05/20 03:51
Prof.Seegenschmiedt 

Re: New here! - VIDEO ONLINE CONSULTATION possible

jazb:
Well I was just diagnosed this morning. Good times!! I have an early stage it seems. One nodule in my left hand that’s been there for about a year. I am male and about to be 44. It seems that when I started cycling a lot more last year the nodule developed which initially I thought was a callus. Didn’t go away over the winter so knew there was a problem.

I’m in Ontario, Canada and it seems that in this province the standard is to be referred to a plastic surgeon who provides treatment.

My GP says they can just inject the nodule with a drug that dissolves the nodule (I assume she was taking about Xiaflex), but after much reading seems like that not the treatment for nodules.

Anyone else in Ontario that had experience with treatment?


Dear "JAZB"

I have treated for several years quite a few patients with early stage disease / stage N - N/I from CANADA due to lack of sufficiently experienced RT centers and trained doctors there with radiation therapy (RT) in our RT center in GERMANY. Due to the actual CORONA PANDEMIA and the related travel restrictions (probably until the end of May 2020) I can offer you a SPECIAL MEDICAL VIDEO CONSULTATION of about 30 - 60 minutes length which will help you to evaluate different treatment options and the actual disease stage.

In case of interest - please contact me with full name, address, details of your disease and evtl. photographs of the affected hand palms - use the internet mailing address: prof.seegenschmiedt@gmail.com

With gratitude for all affected patients & medical colleagues who help to advance patient care,

Prof. Dr. med. M. Heinrich Seegenschmiedt, Radiologie am Stern, Bertoldstrasse 1 - 3, 45130 Essen
https://www.radiologie-am-stern.de/ueber-uns/

Edited 05/05/20 03:55

05/05/20 09:52
spanishbuddha 

Administrator

05/05/20 09:52
spanishbuddha 

Administrator

Re: New here!

jazb:
Well I was just diagnosed this morning. Good times!! I have an early stage it seems. One nodule in my left hand that’s been there for about a year. I am male and about to be 44. It seems that when I started cycling a lot more last year the nodule developed which initially I thought was a callus. Didn’t go away over the winter so knew there was a problem.

I’m in Ontario, Canada and it seems that in this province the standard is to be referred to a plastic surgeon who provides treatment.

My GP says they can just inject the nodule with a drug that dissolves the nodule (I assume she was taking about Xiaflex), but after much reading seems like that not the treatment for nodules.

Anyone else in Ontario that had experience with treatment?
Maybe they were thinking about a steroid shot, more info here https://www.dupuytren-online.info/Forum_...91357_2.html#12.

For most people, this is quite a slow developing disease, and you may never proceed to a contracture. But it makes sense to take a bit more care of your hands than you perhaps did before, when doing sports, DIY, other manual tasks. An occasional, say monthly, photo log or journal may help track progress if you are concerned, and will either be evidence of progression or lead to you forgetting to record it as there's no or little change.

05/05/20 14:28
jazb 
05/05/20 14:28
jazb 
Re: New here!

Thanks for the reply Spanishbuddha. I have read a lot of your posts/reply’s and you obviously are very knowledgeable on this disease. I have heard that is slow progressing for a lot of people and obviously everyone is different but what would be considered slow? 5 years? 10? 20?

Thx

05/05/20 19:31
spanishbuddha 

Administrator

05/05/20 19:31
spanishbuddha 

Administrator

Re: New here!

jazb:
Thanks for the reply Spanishbuddha. I have read a lot of your posts/reply’s and you obviously are very knowledgeable on this disease. I have heard that is slow progressing for a lot of people and obviously everyone is different but what would be considered slow? 5 years? 10? 20?

Thx
Difficult to answer this. Given that the median age for diagnosis is roughly mid 50's to 60's and possibly 80% do not get a contracture, so this is later in life, you could argue 10 to 20 years or more is slow. But people have reported rapid progression in months after diagnosis, although often they seem to be younger, or have a vocation that involves heavy use of the hands, or have related risk factors. In general you have time to adopt changes or plan a treatment, but this likely depends on which side of the median age line you are, and the other things just mentioned.

I hope you don't mind if I point you at other useful information, which does NOT answer your question
Facts and figures and How common
Age and distribution
Treatment survey

05/05/20 20:03
jazb 
05/05/20 20:03
jazb 
Re: New here!

Thanks so much Spanishbuddha. The more information I have the better. Right now the stress/anxiety this is causing me is worse than the flippin disease. Can’t stop staring at my hand. Need to get on with my life and deal with it as it comes I guess. I will be taking your advise on documenting. Thanks again.

05/07/20 14:43
dupynz 
05/07/20 14:43
dupynz 
Re: New here!

jazb:
Thanks so much Spanishbuddha. The more information I have the better. Right now the stress/anxiety this is causing me is worse than the flippin disease. Can’t stop staring at my hand. Need to get on with my life and deal with it as it comes I guess. I will be taking your advise on documenting. Thanks again.

I am no expert - but have had surgery on both hands and for me it developed very slowly. I'm 71 and my first nodules in my left hand were about age 45 and the surgery I had on that hand was at age 70 so it took that long to really form a contracture. My right hand took a little less time and I had surgery on that hand last November. Not that surgery is inevitable by any means because there are other treatments that work, or may work, and as has been said, you may never develop a contracture. I know someone who has never progressed beyond a couple of nodules for a long lifetime.
I'm also very happy with the surgery I've had, by the way - so far!

And I did a lot of cycling - commuting to work - for decades and never wore cycle gloves. I think they are a good idea if you don't already use them and I wish I had. (A cycle glove is also very helpful post-surgery when the hand has healed but is still a bit tender when driving, vacuuming etc)

Good luck jazb!

05/10/20 14:37
BRIANB 
05/10/20 14:37
BRIANB 
Re: New here!

jazb:
Well I was just diagnosed this morning. Good times!! I have an early stage it seems. One nodule in my left hand that’s been there for about a year. I am male and about to be 44. It seems that when I started cycling a lot more last year the nodule developed which initially I thought was a callus. Didn’t go away over the winter so knew there was a problem.

I’m in Ontario, Canada and it seems that in this province the standard is to be referred to a plastic surgeon who provides treatment.

My GP says they can just inject the nodule with a drug that dissolves the nodule (I assume she was taking about Xiaflex), but after much reading seems like that not the treatment for nodules.

Anyone else in Ontario that had experience with treatment?
I had two steroid injetions 6 weeks apart,seems to have stopped growth and shrunk the small nodule.
My advice..find an expert in the field,travel if need be. Dr. Pess in N.J. is fantastic. Wear gloves while biking etc.
Have night splints made by a C.H.T.

05/10/20 14:58
Stefan_K. 
05/10/20 14:58
Stefan_K. 

Re: New here!

I believe in and use a splint glove every night myself, but before there's a cord pulling on a finger there's probably no benefit to doing that. In the early nodule stage I would look into radiation therapy if I was afraid my fingers would end up contracting or the nodules become disturbing. Of course not so easy at the moment.

Stef

[57, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]

05/12/20 22:36
jazb 
05/12/20 22:36
jazb 
Re: New here!

Thanks to everyone who replied to my post. I really appreciate all the feedback.

I did reach out to the Dr that performs RT here in Toronto. The response was this “Radiotherapy is an option for Dupuytren’s, but since the disease is frequently self limiting or very slow to progess, we generally recommend a period of observation. This is because radiation can cause cancer in a small proportion of those treated.”.

So based on that feedback I feel like I’m going to wait and see the plastic surgeon and see what options are there.

BRAINB; do you know what steroid was used?? I feel like this will be my first choice for now.

Thanks again for everyone’s feedback!!

 1 2
 1 2
disease   Dupuytren’s   contracture   seegenschmiedt   Ontario   initially   nodules   radiologie-am-stern   dupuytren-online   Bertoldstrasse   information   dissolves   “Radiotherapy   developed   treatment   experience   diagnosed   Spanishbuddha   knowledgeable   CONSULTATION