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An Australian. Dupuytren's begins.
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08/13/2014 10:33
kate 
08/13/2014 10:33
kate 
Re: An Australian. Dupuytren's begins.

Hi Coogematt. I have made an appointment with a professor radiologist from Prince of Wales Hospital. First when I called there the receptionist asked me about my referral and said they would have to arrange with a Hand therapist as well. Then later another receptionist contacted me and when I asked if the Hand therapist is going to be present at my appointment , she was surprised and said 'no'. What about your appointment with the professor? Is there going to be a Hand Therapist? I have read again your posts here and realized that there going to be a study conducted about RT for Dupuytren's at Prince of Wales. Am I right?

08/13/2014 11:11
newman 
08/13/2014 11:11
newman 

Re: An Australian. Dupuytren's begins.

Good Luck. The use of Rt in Australia is relatively new for the treatment of Dupuytrens and Ledderhose. You will need to be well informed and maybe take along some of the literature to show the Oncologist. The procedure is relatively simple. Unfortunately the use of Rt has been mainly used for cancer and some keloids.

Edited 08/13/14 14:12

08/13/2014 11:33
kate 
08/13/2014 11:33
kate 
Re: An Australian. Dupuytren's begins.

Hi Newman. Are you from Australia as well? The most important thing is to determine when to do RT and only an experienced doctor could tell that.

08/13/2014 14:00
newman 
08/13/2014 14:00
newman 

Re: An Australian. Dupuytren's begins.

Hi Yes I am a travelling Aussie. I know that experience is gained through doing- it depends if you want to be part of the learning!
We all have to put the trust in the hands of the Doctor.

Edited 08/13/14 17:02

03/19/2015 23:55
Coogeematt 
03/19/2015 23:55
Coogeematt 
Re: An Australian. Dupuytren's begins.

It has been 6 months now since I last posted on this thread that I started.
My DC first appeared in May 2014 a nodule in my left hand. It grew, got harder and then stablished in size over a 3 months period. Then later I noticed, just slightly, a cord developed running down my palm away from nodule. This is also stable and appears not to be growing/or progressing. (Over this time I have visited an oncologist in Sydney., Prf Jackson, that treats DC with Rt. More on that below).

Now, in Feb 2015, I have felt an ache or soreness in the middle finger on my right hand. This hand appears to have no visible nodules, cords or hardness. But when hand is layed flat there appears to be a very very very slight bend in middle finger and ring finger compared to my left hand (and it's the left that has the hard nodule and cord but zero contracture). When originally seen by hand surgeon he said he could feel hardening in my right hand. I couldn't. The radioligst back then along with the consulting hand therapist (happens to be the hands surgeons wife) could not determine any hardening in right hand. Again, as I have stated before, it is very subjective on how they identify where there is growth.

As I feel my right hand now and I think I can feel a difference but not sure. Can I feel a lump developing just? Oh wait, is it just a bone I'm feeling. The flesh in my palm just below finger does feel tighter/harder than in left hand. Or is that just because my right is my dominate hand.

Is there a method out there other than just feeling the hand to determine where and if hardening/growth is happening. Can Ultasounds do this? Can CT do this? Any opinions.

I want to have a more accurate method of determining when it's active or not so as to determine when to have RT. Even though I feel something in my right hand I don't know if it's DC or not. I could go back to hand surgeon. He is likely to say it is after a quick feel. He again will say only option is RT at this stage. So you go see to the Radiologist again. The radiologist, the only one in Sydney who uses RT to treat DC is Prof Michael Jaxkson. But he seems to have limited knowledge on identifying DC growth, the hand therapist has seen me twice over a 5 mth period and never took measurement, drew diagram or photos. So it all depends on me when to have the RT. I think when I do have they will just target my whole palms.

So up till now I have been happy with my wait and see. It seems not to be an aggressive form of DC in me. I will keep monitoring my hands, in particular the new sensation in my right hand middle finger (who knows, I may have just knocked it without realising and it will come good over time).

But in the meantime has the other Sydmey people on this thread being to see Myers or Jackson? What treatment have you had? How is your DC progressing?

Also has anyone had experience with the DC growth being mapped/identified accurately using CT or ultrasound?

Coogeematt

11/09/2020 08:30
Coogeematt 
11/09/2020 08:30
Coogeematt 
Re: An Australian. Dupuytren's begins.

I’m Back. It’s Nov 2020. So much has happened since May 2014 when I first got my DD condition. Several prime ministers, bushfires, Trump has come and gone and a Pandemic has struck the globe. It feels my DD is trivial with all this going on but even in a pandemic we need to be vigilant of our own health.

(Read my first few post in this thread to give some context)

I write again as today I spoke with my brother who wanted advice on his DD. Back in 2014 when I first discovered mine he had no evidence in his hands. Then a few years later he thought he could feel a few lumps and hardening. No need for a medicos diagnose as we knew what it was. He NOW has a lump or hardening cord growing at the base of his little finger. His little finger is contracting and gets in the way of other fingers. When he plays golf he finds it painful where the lump is. So has taken 4 years for it to impact his hand use.

In contrast my DD seems to have remained stable over the past 6 years. In fact in really only worsened for 6 months from the first I noticed it and then nothing else developed. My left had has two nodules and a creasing in the middle of my palm but zero contraction. And my right hand has no evident nodules or cords back in 2014 but the hand doctor said he could feel hardening in my palm. It remains now with noe ident signs. But like in 2014 there is a slight bowing of fingers when I do the flat hand test. Like it’s near zero. So no change in 6 years.

So I, as I predicted by researching my family history of the disease, have a non aggressive form of DD. Well so far anyway. So will just keep monitoring and no action required.

But my brother who appears to be developing something more. Maybe he has moved into an active stage. This shows that the aggressiveness of the disease can be different between members of the same family. So researching family history may have no benefit. Maybe there is more environmental influences in play.
So I plan to read up on this site the latest on the use of RT in the early treatment of active DD cases. Hopefully Australia has caught up on this.

Hopefully you won’t hear from me for another 6 years.

11/09/2020 08:37
Stefan_K. 
11/09/2020 08:37
Stefan_K. 

Re: An Australian. Dupuytren's begins.

Hi Coogeematt. Thanks for the detailed update.

Your brother may want to look into NA needle release for the finger getting in his way.
https://www.dupuytren-online.info/needle_aponeurotomy.html

I hadn't realized Trump was gone. Do you have some insider information ? :-)

Stef

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

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disease   Australian   Dupuytren   condition   diagnosis   possible   progression   hardening   therapist   Radiotherapy-Literature   radiologist   nodules   effective   Jackson   appointment   contracture   spanishbuddha   surgeon   Coogeematt   treatment