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NA experience by Australian Users
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06/05/2013 13:00
jpsharma 
06/05/2013 13:00
jpsharma 
surgery

is there any doctor in india who can perform surgery on bend thumb finger of right foot.

Edited 06/05/13 16:01

06/06/2013 05:55
brianl 
06/06/2013 05:55
brianl 
Re: NA experience by Australian Users

Dear Sir,

Please know that this thread is specifically for DC sufferers who live in Australia but of course anyone can view the posts and contribute. I suggest you look elsewhere on the forum to see if there are any threads relating to sufferers in India.

FYI: there are no India based doctors listed on the Dupuytren's website which is: http://www.dupuytren-online.info

Your condition may be Ledderhose disease ( I have a mild form myself ) which is related to Dupuytren's contracture. It is described on the website.

I know that some of the Parisian doctors perform NA on the feet to correct severe Ledderhose. For example Dr Manet-Chopin. I would suggest that you need to get a proper diagnosis of your condition from an appropriate specialist Doctor in India before you consider travelling to Paris.

I wish you the very best in getting appropriate treatment.

Kind regards,


Brian

07/09/2013 03:08
Lenfitz 
07/09/2013 03:08
Lenfitz 
Re: NA experience by Australian Users

This is my first post here and I am from Australia and living in Sydney's western suburbs. Age 51. Having been diagnosed with DC I am pondering my best options. DC effects 6 out of 10 of my fingers to differing degrees. The worst being my left hand pinkie finger which has now passed 90 degrees. My 2 middle fingers and right hand pinkie are currently at 90 degrees. The other 2 fingers are around 30 degrees to the horizontal.

I have been reading just about everywhere I can including university studies which indicates it is a collagen related issue. My father (Age 75) who also has the condition tells me that only open hand surgery will result in any benefit.

There appears to be 2 options.

1. Surgery
2. Usage of anti-collagens such as xiaflex etc

So is NA one of these two options and would someone mind explaining what it involves.

I have been putting off any form of treatment as I have been told that it is common after surgery that DC returns then the next option is removing a finger. This scares me.

Much like everyone else keeping my fingers is important. I work in the internet industry as a web developer, programmer and technology specialist. So typing on a keyboard is a must for my lively hood.

What are my real options considering I do not have pockets full of cash and travelling to Paris as someone here suggested is not an option. I read here that there are varying degrees of success but this will ultimately depend how serious each individual is effected.

So I am looking for best options given the experience of those afflicted. This is a journey I am really not looking forward too.

What is the best way forward?

Cheers and best wishes
Len

Edited 07/09/13 06:10

07/09/2013 03:32
johngels 
07/09/2013 03:32
johngels 
Re: NA experience by Australian Users

I had surgery on my left hand in 1999. It was very painful requiring three days in hospital. I had surgery on my right hand a few years later. When my thumb started to contract the surgeon said surgery was the only solution. When I discovered that Dr Griffin at Flinders Medical Centre (Adelaide) performed NA I organised a referal from my GP. NA took 30 minutes, mainly waiting for the local anaesthetic to take effect before Dr Griffin used a needle to weaken the chord. I could not believe how easy it was, particularly in comparison with the pain and inconvenience of surgery. I understand NA is available in Sydney. Johngels

07/09/2013 04:07
Seph 
07/09/2013 04:07
Seph 

Re: NA experience by Australian Users

Lenfitz; I can understand why your father would say that only surgery will result in any benefit as that was the understanding we were all given until recently and it remains the advice that most hand surgeons in Australia will give you. I am 59 and I to live in Sydney.

There are currently 4 mainstream options for you to consider:
1) Surgery - I have had surgery once before I knew better. I now consider this to be a last resort.
2) Radio Therapy - I have not tried this. Apparently works on nodules not cords but they must be active at the time you get treatment.
3) Xiaflex - I haven't had this either. Sounds painful. Too experimental for my liking. Not sure I like the idea of injecting chemicals into my hands to manage a non life threatening disease.
4) NA - I have had this 3 times on one hand and two on the other. Each time with good results.

It seems to me that the only one that stops the progression or recurrence (In the location treated) is radio therapy.

With NA, in my case, the disease does seem to come back relatively quickly but it is a simple economic procedure and I treat it as being a bit like going to the dentist. In any event it came back after surgery as well just took a bit longer. With surgery the costs are much higher and you are talking about months of physiotherapy etc etc.

NA takes about 20 minutes per hand, you need to keep the hand bandaged dry and clean for 3 days to avoid infection and you need to avoid lifting anything heavy for 10-15 days. That's it.

There are doctors now performing NA in Sydney but I haven't been to them yet as they seem to be a bit tentative and lack experience so all my treatments have been in Paris. Sounds expensive but it might be cheaper than your options here. First you don't need a referral or a prior appointment. The doctor will charge you 250 euros per hand and you can get return flights to Paris for less than $2,000. In Sydney you need to see a doctor for the referral then at least one prior consult before you get to any form of treatment.

When I first went to Paris I had no other choice but now there are doctors in Sydney Melbourne and Brisbane performing NA so you have a choice.

Good luck.

07/09/2013 04:24
SteveJM 
07/09/2013 04:24
SteveJM 
Re: NA experience by Australian Users

Hi Len,

I live on the central coast NSW and I am a semi retired graphic designer and a musician (guitar) with DC on both hands. When it was first diagnosed nobody in Australia was performing NA.

It's pretty scary stuff when you first start to consult with the (so called) experts about this.

My experience of the last ten years coping with this problem in Australia is that nearly all Doctors (GPs) and Surgeons are totally ignorant of NA treatment... or they have their smug heads shoved so far up their #### that they just don't know any better than to perform hack and slash surgery!

When first reaching the stage that I had to have some treatment, I did the same as you and searched the net, spoke to doctors and so called specialists... generally getting confused, scared and and frustrated when they all said I need to have full surgery. NO WAY!

Eventually I decided to stomp up the dough and fly to Florida to have the NA treatment by Dr Eaton. The trip cost me about four grand all up and Dr Eaton was a charming and very knowledgeable man. He fixed up both my hands in two visits lasting about 40 minutes each with very little discomfort. In each hand I had DC in ring and index fingers and both thumbs. I left Florida three days later with straight hands, no pain, no infection.

That was ten years ago. The problem is that as you are probably aware for many of us the DC returns (as did mine) but I got nearly four years of relief from it.

Then about six years ago, realising that I needed to have my hands fixed again I found that there was a new kid on the block operating here in Australia. He is a plastic surgeon practicing in Victoria and his name is Mr David Hunter Smith - Coastal Plastic Surgery Centre - 1/262 Main Street - Mornington 3931 - Victoria.
My wife and I went to his surgery and he performed N.A. on both my hands on the same day at his day surgery.
I was then sent to a nurse who made me up splits and I was on my way home the following day - with straight hands.
Cost was about $700 some of which was got back from medicare.

I had some NA attempted by a Sydney doctor about six months ago (who I will not name) but he seemed reluctant to treat me, the treatment he performed was not very successful, and the DC has returned with a vengeance. :-(

So, I need to have my hands done properly again soon and will hopefully be going back to see Dr Hunter Smith.

If I had the money I would take the trip to Paris for NA as they have the real experts and I have only heard good things about them - I understand that Both Eaton & Hunter Smith learned the techniques from these French doctors.

Its a shame that doctors in Australia do not embrace this NA technique, sure it will not cure the problem, but it is far less invasive than anything else available, can be performed in a day surgery, is safe, fast, and effective.

Sadly, in my experience most of the few doctors here who are 'having a go at NA' are a bit inexperienced... but with the exception of Dr Hunter Smith who was fantastic.

I hope this was helpful?

Steve

07/09/2013 04:33
juliebeesley 
07/09/2013 04:33
juliebeesley 
Re: NA experience by Australian Users

Thanks your the information about Dr Hunter Smith.

I have an appointment to see Dr David Dilley in Sydney (after also been told by an arrogant doctor that surgery was THE only option).

Do you totally recommend going to see Dr Hunter Smith above any Sydney doctors?

Cheers
Julie

07/09/2013 04:37
SteveJM 
07/09/2013 04:37
SteveJM 
Re: NA experience by Australian Users

Hi Julie,
Having seen both of these doctors I was much happier with Hunter Smith and felt that he was the more experienced of the two when it came to NA.
Cheers
Steve

07/09/2013 05:50
brianl 
07/09/2013 05:50
brianl 
Re: NA experience by Australian Users

Hi Julie,

As I've mentioned in this thread a few times, my experience with David Dilley last year was excellent so I'd expect that you'll be happy with yours

Btw: I sent you an email on 6th June providing you with my contact details but I haven't heard from you. If you didn't receive, let me know and I'll re-send.

Cheers,



Brian

07/09/2013 05:55
brianl 
07/09/2013 05:55
brianl 
Re: NA experience by Australian Users

Hi Len,

Please read my posts on this thread in June.

Also, I'd be more than happy to talk to you about my experiences with DC and NA. If you'd like to do so please post your email address here and I'll send you an email directly to same.

Cheers,


Brian

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