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G'day! I'm new here
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04/18/12 05:00
Littlehorse 
04/18/12 05:00
Littlehorse 
G'day! I'm new here

G'day From the land of Oz!

Or aka "The Land Down Under" aka Australia, Southern New South Wales to be exact.

This is just a quick G'day and introduction of myself as I need to go back outside to finish working with my horses. (Yes, I have horses and Dupuytren's which is a bit of a problem at the moment! )

Just briefly, I am a 56 year old female who has had Dupuytren's for a long time now. I've been avoiding getting the surgery done for many reasons which mainly involve my fear of losing the use of my hand and so my ability to work with my horses and also paint as I am an artist as well.

However, according to some of the photos I've seen here on the internet my right hand is now at stage 2 or 3 (depending on which reference photos I'm looking at so I am not really sure... However, my ring finger is now completely bent down and I can't extend it at all. )

I have seen a doctor who has referred me to a surgeon to have surgery done. He told me that if I didn't have it done soon I may need to have my fingers amputated which scared the S!#$%^it out of me! I found out through Googling Dupuytren's that there are new alternative treatments for it so here I am as I don't want to lose any of my fingers.

Does anybody out there know of any doctors in Australia (Preferably in Southern New South Wales) who are aware of and educated in the new treatments for it that originated in France???

Ok, Gotta Run as I'm in the middle of bringing in hay in the rain and it's not an easy task when one has Dupuytren's contracture!

Cheers!
Paula
paula@theparrothangout.com

04/18/12 05:16
callie 
04/18/12 05:16
callie 
Re: G'day! I'm new here

I guess firstly, why do you not want to have surgery? Is it that you just don't like the thought of surgery, or is it something else? The recovery does take longer, but it is not like your life is shut down. There is generally not much pain involved (I took Advil for a couple of days) and recurrence is generally more desirable than other procedures. Having said that, your options become more limited when you reach your stage. There are many on this forum from Australia so you should get some good information.

04/18/12 14:12
Littlehorse 
04/18/12 14:12
Littlehorse 
Re: G'day! I'm new here

Hi Callie,

You wrote:
>I guess firstly, why do you not want to have surgery? Is it that you just don't like the thought of surgery, or is it something else?

For several reasons the main one being the amount of down time I will need to take for recovery. I realize that pain is a part of surgery and am mentally prepared for it. I've been a horse woman all of my life so have had injuries before that resulted in pain! That goes with the territory.

>The recovery does take longer, but it is not like your life is shut down.

I don't live in a big city and work at your average desk job. I live on a rural property and have horses and other animals to take care of. I don't have anyone here who can help me do it over a long term (like 6 months) and I can't afford to pay anyone else to do it for me.

As I may have mentioned I think I am a stage 3 contracture. I have read a few web pages about the surgery and have learned that I may need to have a skin graft done as the disease grows into the skin. I imagine that such a deep wound along with a skin graft would take a long time to completely heal and close up well enough for me to work safely with my animals without the risk of infection.

I have also read that I will probably need some type of physical therapy and that it can take months for me to regain the use of my hand and that I may never have a proper grip again. This also means that it will be a long time before I will be able to care for my animals. That would GREATLY shut down my life. As far as getting to physical therapy I live a long way away from a major city and can't afford to travel back and forth to Sydney or Canberra every day for it.

I have Dupuytren's in both hands as well as Ledderhose in my feet. I have read that having both means recurrence is more likely for me. So, I think I'll be fighting this disease for the rest of my life. I am wondering if anybody on this list has applied for disability support and if they even recognise Dupuytren's as a disability here in Australia? It seems one needs to be blind or brain dead before they will give it to you here.

04/18/12 16:06
callie 
04/18/12 16:06
callie 
Re: G'day! I'm new here

I'll let others answer, but I think you have overstated the effects of surgery. I had stage 3 Dupuytren's and did not do physical therapy (I exercised the hand during the day, on my own). I did not have a skin graft, either. But I did have to take care of the hand and do many things one-handed for a few weeks.

The other procedures will probably be best for you, but you will most likely repeating the procedures often. Good luck.

04/19/12 04:12
hammer 
04/19/12 04:12
hammer 
Re: G'day! I'm new here

I had 4 surgeries in 6 years, so much for the statement about having to repeat treatments.Some people have NA and some people have Xiaflex and some people have surgery.Its not about the treatment as far as having to repeat,its about how agressive your DD is and not somebody else case is.All bein said you are correct when it comes to down time.I had Xiaflex manipulation on a saturday and back to work on monday.2 days and i was cuttin meat with the treated hand.My last 2 trips to the operating table were open palm and took months to heal so if your case is agressive then opt for NA or Xiaflex.If its a slow and not agressive case then you might be in the one and done club and surgery could be the way to go.Dave

04/20/12 12:41
newman 
04/20/12 12:41
newman 

Re: G'day! I'm new here

Hi Australia Calling,
I have had 15 odd surgeries including 4 skin Grafts. Generally the skin graft option is not used in the first instant as some patients may have surgery and never have a repeat. In 07 I had RT after a repeat surgery.It would appear in my case the first surgery started the clock ticking for the next surgery with the time span between surgery becoming shorter and shorter,and the outcome reducing because of scar tissue. Back then the option of RT and NA were not known in Australia . It would be worth your while making contact with Dr Dilley who is listed on this website for NA .His practice is in a suburb of Sydney. You will not get disability in OZ . The downtime with NA is minimal- straight back to work. Regards

Edited 04/20/12 12:43

12/13/12 07:08
dupycberra 
12/13/12 07:08
dupycberra 
Re: G'day! I'm new here

Theres a new treatment, that completely avoids surgery and only involves 2 injections. They're running trials at the plastics unit at the canberra hospital and other centres around australia - so if you're interested ask around!

12/13/12 07:23
Seph 
12/13/12 07:23
Seph 

Re: G'day! I'm new here

dupycberra, I have heard nothing of this and I live in Australia. Would you care to give us a little more information?

Edited 12/13/12 07:24

12/13/12 08:18
dupycberra 
12/13/12 08:18
dupycberra 
Re: G'day! I'm new here

There's a drug called Xiaflex used in the USA & Europe that is injected into the Dupuytren's & dissolves the cord causing the finger to remain bent. It completely avoids surgery and has as good results. The trials running now so if anyone is interested it's being run through the plastic hand surgery unit at the canberra hospital, also other sites around Australia in Brisbane & Melbourne & Perth but don't know exactly which centres.

12/13/12 09:47
Seph 
12/13/12 09:47
Seph 

Re: G'day! I'm new here

You will find a lot of information about Xiaflex on this web site. Interesting that someone would be doing a trial here when it is already being used extensively in other places.

From what I have read Xiaflex is not a magic bullet.

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