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NA experience by Australian Users
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06/03/2013 09:02
rosco 
06/03/2013 09:02
rosco 
Re: NA experience by Australian Users

Well it has been almost 6 years since I first posted in this thread (2007) just prior to surgery to my left hand / ring finger. This was in between 3 operations for frozen shoulders (a known problem for DC suffers). You will find several of my posting from 2007 to 2009 covering my experiences back then...so no need to repeat.

Some 6 years on, and almost 3 weeks after surgery to my right hand / ring finger, I thought I best report in.

Truth is, I am probably getting use to surgery from this dreaded disease and have no real expectations that I will ever be fully cured (i.e. at age 59 I suspect it will revisit me in a decade or so) . With that acknowledgement, my recovery post my latest surgery has exceeded my best expectations. The chord at the base of my palm was much thicker this time (compared to that which grew in my left hand), and the degree of contraction of my ring finger was much more pronounced (estimate at right angle to palm). I forget the correct nomenclature for identifying the various finger joints, but the chord in my RH extended half way up the ring finger leaving the finger permanently bent.

In short, the hand was proving virtually useless...and frankly a complete embarrassment when it came to to shake someones hand.

So...having had my left hand functionality fully restored following my 2007 operation...I went back to the same doctor (Newcastle NSW Australia) and repeated the exercise on the right hand (RH).

I am not suggesting others should attempt my road to recovery, but I thought I would share the results thus far. Discharged from hospital after 24 hrs (overnight)...I returned home and was playing piano (poorly) with 3 fingers of my RH that afternoon (Ring and little finger were bandaged). I was back at my place of employment the next day. Using the piano as a yardstick to recovery, I was playing with 4 fingers of RH (minus ring finger) within a week and playing with all 5 fingers of RH by 2nd week. Given that I have been deprived of full use of my right hand for at least 2 years, the experience on the piano has been absolutely exhilarating (not sure the wife or neighbours would agree...took a hour or two to regain keystroke accuracy with the ring finger...but a ~50 year habit of playing keyboards quickly returned....).

Frankly, the action of playing keyboards (and typing emails etc) has proven great therapy in quickly returning my hand to use. 17 days after the operation, I can now extend my hand fully (stretch an octave) but still can't make a full fist; though I suspect this is only a week away. As I reported back in 2007, my surgeon does not require any particular physio; nor does he employ splints after surgery. The message he gives me is to just use the hand sensibly and regularly. I rub some of my wife's expensive hand lotions into the wound ~ every hour to keep moist...and bend / flex fingers at every opportunity. The swelling has almost gone, and the sense of touch and heat has returned quickly to all but the base of the ring finger (surrounding wound). Further, I have not needed any use of pain killers since leaving the hospital on the day after the surgery.

I expect to be back playing golf within 3 weeks (perhaps less...though I returned too early back in 2007 and set back my ultimate recovery by several weeks due to splitting of the wound).

I share this experience in the knowledge that surgery is not the preferred method by many to attack this disease; in fact it often gets (I believe) very bad press. But, I can only thank the skill of my surgeon, he obviously knows his stuff.

Again though, I stress that this is not a cure...but hopefully it will buy me a decade or so in which to play quality golf and keyboards before DC makes an unwelcomed return.

Edited 06/03/13 12:03

06/04/2013 02:10
brianl 
06/04/2013 02:10
brianl 
Re: NA experience by Australian Users

Hi Rosco,

Great to hear that you had such a good result, especially after reading that post a couple of years ago about a Newcastle hand surgeon who amputated a DC patient's fingers because " the disease was too far gone to treat".

I've had both traditional surgery ( in 1994 ) and NAs last year and in 2008 in both Paris and Parramatta.

All my procedures were very successful but the advantages of NA are overwhelming in my opinion because NA is so quick (usually less than an hour per hand ), virtually pain free, has virtually no recovery time and immediate results! The bonus is that it's much cheaper than conventional surgery. For DC sufferers living in Australia the only problem is that there are only a few skilled and experienced doctors who will perform NA and some of them won't take on the more difficult/advanced conditions.

All the vey best to you.

Cheers,


Brian

06/04/2013 03:20
callie 
06/04/2013 03:20
callie 
Re: NA experience by Australian Users

rosco, great to hear of your success. Your recovery has been quicker than mine was. I am over eleven years since my surgery. I have no hint of return of Dupuytren's so far. My hand is still as good as before the Dupuytren's. My recovery was similar to yours ... very little pain, no hand therapy except what I did on my own and keeping the wound moist with lotion for massaging. I was not golfing until about 7 weeks primarily because I am right handed and I take a divot usually with my irons putting pressure on my left little finger (which had the Dupuytren's).

I would do surgery again if needed because of the great results that I had. I did have RT on my other hand about six months ago. The tech that worked with me for the RT had surgery for Dupuytren's almost 20 years ago and his hand still had zero contracture. That is encouraging.

06/04/2013 10:54
juliebeesley 
06/04/2013 10:54
juliebeesley 
Re: NA experience by Australian Users

Good evening,
I live in Sydney & Im having trouble finding a good & experienced doctor. Can anyone recommend someone please?
Cheers Julie

06/04/2013 12:33
Seph 
06/04/2013 12:33
Seph 

Re: NA experience by Australian Users

juliebeesley:
Good evening,
I live in Sydney & Im having trouble finding a good & experienced doctor. Can anyone recommend someone please?
Cheers Julie


Hi Julie; Wish I could help as I also live in Sydney. I have seen Dr Anthony Beard at North Shore Private a couple of times over the past 10 years but he is only interested in conventional surgery. At my last visit I told him that I was going to get NA done in Paris and he told me that he would like to see me afterwards to repair the nerve damage or learn. I sent him before and after photos and told him how it all worked and he did not reply.

After having NA twice in Paris I saw that Dr David Dilley at Parramatta was doing NA so I sent him photographs of my hands with full details of past surgery and NA. His response was to say that he couldn't determine that I had DD from the photographs. I took the view that if he couldn't see DD in the photographs of my hands I didn't want him messing them so I went back to Paris last December.

Some people on this web site are enthusiastic about a Dr Jennifer Green at the Wesley Medical Centre in Brisbane. You might like to check there.

Good luck.

Seph

06/04/2013 13:57
bcarey 
06/04/2013 13:57
bcarey 
Re: NA experience by Australian Users

juliebeesley:
Good evening,
I live in Sydney & Im having trouble finding a good & experienced doctor. Can anyone recommend someone please?
Cheers Julie

Hi Julie,

I live in North Queensland and have used Dr. Jennifer Green for N.A. when she was in Sydney (now in Brisbane). She did a very good job on my left hand about 5 years ago but it was a simple case. She wouldn't work on my right hand as she said it was too difficult and was worried about damaging nerves.


I tried to get it done in Paris but had trouble communicating.
Finally I had N.A. done in Brussels in Belgium 2 years ago. It was very successful and I had no trouble at all. The doctors in Europe see a lot of cases and have a lot of experience using the procedure as the original procedure was developed by a doctor in Paris. For them NA is no big deal. It cost less than $600 and took about 45 minutes. She had to go slowly because the nerves of the little finger were entwined with the contracture. It hurt quite a bit while she did the procedure as she couldn't fully desensitize the finger because of the nerve problem. However as soon as she finished there was no pain and she did not suggest a splint. I have had no problems since. Even if I have to have it redone every 5 years it seems a better solution than traditional hand surgery.

Conventional hand surgery frightens me.
N.A. was such a simple procedure with little downside and no recovery problems.

Do some serious research and question the experience of others.

Good Luck,
BrianC
North Qld.

06/05/2013 01:10
brianl 
06/05/2013 01:10
brianl 
Re: NA experience by Australian Users

Hi Julie,

Please refer to my post of yesterday and earlier ones ( I started this thread ).

To repeat, I had an NA procedure with David Dilley last October and I consider him to be extremely competent. I am very satisfied with the work he did on my left hand, although I must say it was a relatively simple two cord procedure.

I also went to see Jennifer Green in 2008 when she was practicing in Sydney and she told me that my condition was too far gone for NA. A few months later I went to see the "inventor" of NA, Dr Lermusiaux, in Paris and he completely straightened a very distorted right hand ( apart from some residual bend in the little finger ). Compared to the doctors in Europe, especially Paris, and the US the NA doctors in Australia are not very experienced and are arguably over cautious. Dr Lermusiaux, now retired, used to perform several NA procedures per week for over 30 years!

I disagree with Seph's position: I feel that the doctor does need to see the patient before he can confirm a diagnosis of Dupuytren's Contracture. The doctors in Paris do seem to make a diagnosis via photographs but as I said they're far more experienced.

If you'd like to discuss this further then please post your email address or phone number and I'll give you a call ( I live in the eastern suburbs of Sydney ).

Cheers,


Brian

06/05/2013 09:28
juliebeesley 
06/05/2013 09:28
juliebeesley 
Re: NA experience by Australian Users

Thanks so much for your replies. I've seen two doctors in Sydney so far but I am not happy with either. One told me to do nothing and to simply 'enjoy life', and the other said that surgery was the ONLY option. He also arrogantly dismissed this forum (he hadn't even heard of it). It seems so counter intuitive to do nothing in the early stages (which mine is) and just wait until it worse! I googled and came up with Dr Edinburg from here: http://www.edeninstitute.com.au/
Has anyone heard of him? Seems so extreme to go all the way to Paris for treatment, but Brisbane is certainly doable. Brian my email is juliebeesley@hotmail.com and I would greatly appreciate talking to you directly about your experiences and treatment options.

06/05/2013 10:20
wach 

Administrator

06/05/2013 10:20
wach 

Administrator

Re: NA experience by Australian Users

Dr. Edinburg is a plastic surgeon, not a hand surgeon. I don't know how often he operates on Dupuytren's contracture but from his website I would guess that he is doing mostly other kinds of surgeries. Hand surgery is very delicate and if you decide for surgery an expert is highly recommendable.

Wolfgang

juliebeesley:
... I googled and came up with Dr Edinburg from here: http://www.edeninstitute.com.au/
Has anyone heard of him? ...

06/05/2013 12:31
Seph 
06/05/2013 12:31
Seph 

Re: NA experience by Australian Users

Julie; it may seem extreme to go to Paris for treatment but, if you have the time, it is less expensive than treatment in Australia and you get a holiday thrown in. On top of that you get treatment from people with a lot of experience who know what they are doing. Dr Badoit in Paris has very good English, the cost is 300 euros per hand and he has a lot of experience.

You can get return tickets to Paris for $1,500-2,000 then you need 2 nights accommodation plus the cost of treatment. So a return trip including treatment can come in at less that $4,000. And the good thing is that there are no middle men.

In Australia you need to get a referral from a GP $100, then wait weeks to see the specialist who charges another $3-400 etc etc. And that's before you get any treatment. My experience with European doctors is that you deal with them direct. Send a photograph, book and appointment turn up on time and they treat you there and then, in the consulting rooms, and on time. No waiting around in waiting rooms. Your 2.30 appointment is at 2.30.

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