| Lost password
581 users onlineYou are not loggend in.  Login
Australian treatment options
 1 2
 1 2
06/16/2013 04:23
Jaci

not registered

06/16/2013 04:23
Jaci

not registered

Australian treatment options

Hi all,
I thought I would start a new thread to make information for Australia DD lotto winners easier to find. At the moment, I find I read plenty of Australian stuff mixed in with US treatment options, and then can't locate it again.

I have been writing in a different thread. A fellow Forum user, Brian, is making enquiries regarding Xiaflex release in Australia. I will re-post any information in here.

I am having NA in 3 weeks time in Melbourne and am happy to feedback to any fellow Aussies on the success (hopefully), results of the treatment.

Please feel free to post any information or news, or personal experience here.
Jaci

06/16/2013 04:42
Seph 
06/16/2013 04:42
Seph 

Re: Australian treatment options

Jaci; I have sent you a private message with the details of the person that contacted me about what I think are Xiaflex trials in Australia. They were looking for candidates. May be too late for the program that they were running but they should be able to put you in touch with the right people if you want to explore further.

06/16/2013 09:02
juliebeesley 
06/16/2013 09:02
juliebeesley 
Re: Australian treatment options

Great idea Jaci,
I'll be keeping a close eye on this thread. I've been to two specialists in Sydney. One told me to do nothing and 'enjoy life'. He was also strongly against acupuncture. The other doctor recommended surgery and was dismissive of this forum (he had never even heard of it) and dismissive of any treatment aside from surgery. I'm not satisfied with either of these extremes & I would love to find a Sydney doctor who is fully educated in this disease.

Sincerely,
Julie

06/16/2013 10:58
Jaci

not registered

06/16/2013 10:58
Jaci

not registered

Re: Australian treatment options

Julie,
I have read/heard good things about Dr Dilly in Sydney. His details are in the NA practitioners section but from what I gather, he is doing a range of treatments.
Jaci

06/16/2013 12:07
Seph 
06/16/2013 12:07
Seph 

Re: Australian treatment options

Jaci; Sorry to be Mr negative but, in July 2012, I sent Dr Dilley the attached images (Much higher resolution) of my hands. I also provided a summary of past treatment which included surgery and NA. His response, and I quote, was "Dear Mr Glew, the pics are not clear enough to make a determination absolutely."

My view is that any doctor who can't see that I have DD needs a lot more experience before he goes anywhere near my hands.

By contrast when I sent these images to Doctors in Paris they recognized the condition without difficulty agreed to schedule procedures without a prior consultation.

Edited 06/16/13 15:14

Attachment
S(1) Left Hand.jpg S(1) Left Hand.jpg (25x)

Mime-Type: image/jpeg, 133 kB

S(1) Right Hand.jpg S(1) Right Hand.jpg (19x)

Mime-Type: image/jpeg, 150 kB

06/16/2013 21:29
juliebeesley 
06/16/2013 21:29
juliebeesley 
Re: Australian treatment options

Hi Steph,
This is posted in the Q&A section on Dr Dilley's website which might explain his reluctance to use photos alone:

While very helpful in a general sense, emailed pictures never tell the full story! While it is obvious what the problem is, they do not give any idea of skin tethering for example. Fine surgical scars can be hard if not impossible to see, there may be no hint of joint arthritis etc. It is difficult, on the basis of pictures alone, to recommend patients undertake a sometimes long, expensive journey in the expectation of having NA, only to find after an examination that too much skin involvement or scarring they have omitted to mention, means NA cannot be done!

Regards
Julie

06/16/2013 22:36
Seph 
06/16/2013 22:36
Seph 

Re: Australian treatment options

Good Point. Maybe I am being a bit too harsh but then again I did send images with 10x the resolution that I posted here and Dr Manet-Chopin in Paris was able to see what was required.

When I arrived in her rooms in December she had the required number of needles laid out and she was ready to go. And my 4.20 pm appointment was at 4.20 pm on the dot.

06/17/2013 07:14
Jaci

not registered

06/17/2013 07:14
Jaci

not registered

Re: Australian treatment options

Seph, I understand your frustrations with Dr Dilley, however, the medical profession is so wrought with law suits, I would understand his reluctance to diagnose through a series of photos.

It's amazing what you find when you start digging around - I read today they are currently trialling Botox (of all things) as a possible treatment option! If nothing else, at least you will have very young looking hands, even if they are all doubled over (not meant to offend anyone, but if you can't laugh about it, you'll cry, that's for sure!

I did learn today that a Ballarat doctor is apparently treating with NA! If I had have known that, I could have stayed here and not gone to Melbourne. I'm all booked and paid up though, so just passing on info if anyone wants it. There must be more NA practitioners than what we all think!?

06/17/2013 07:25
wach 

Administrator

06/17/2013 07:25
wach 

Administrator

Re: Australian treatment options

Good that you found him! Who would that be? Do you know where he learned NA and do you possibly have an email address? We might add him to our list. And yes, there are certainly more NA doctors out there than we are aware of.

Wolfgang

Jaci:
... I did learn today that a Ballarat doctor is apparently treating with NA! ...

06/17/2013 07:32
Jaci

not registered

06/17/2013 07:32
Jaci

not registered

Re: Australian treatment options

Wolfgang, I was told Dr Holten at Skin Face Body is doing NA. I don't know how reliable that is, or what his background in NA is either. Just sharing some info. You could email him?

 1 2
 1 2
corticosteroid   determination   options   appointment   practitioners   frustrations   Australia   Xiaflex   consultation   receptionist   Manet-Chopin   information   experience   difficult   treatment   Dupuytren’s   Australian   dupuytren-online   compromised   interesting