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Dupuytren - When to have surgery!
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01/26/20 09:56
spanishbuddha 

Administrator

01/26/20 09:56
spanishbuddha 

Administrator

Re: Dupuytren - When to have surgery!

The cord in the palm would appear to be amenable to NA, I can’t say about the finger. From the photos I would have the discussion with Dr Griffin on NA versus surgery, my personal angle would start with “why not NA”?

It may be possible to get your hand straight now with NA, straight enough for your work, life, hobbies, etc, and be on your way fully recovered within a couple of days. There is always the possibility of recurrence sooner than later, but NA can often be repeated, and you could in the meantime look into the prospects of RT.

Surgery is going to be more comprehensive, palm and finger, removing cords and nodules, possibly a better outcome than NA, but a longer recovery, weeks, or even months at worse to get back with ongoing physio, scar management, etc, and that one-handed-ness during recovery has to fit with what’s going on in your life now. The more extensive damage done by surgery has a greater risk of invoking further DD. Or not! Everyone is different.

This is the discussion to be had with Dr Griffin.

Edited 01/26/20 16:14

01/27/20 09:22
Cas2019 
01/27/20 09:22
Cas2019 
Re: Dupuytren - When to have surgery!

Thanks for your comment/diagnosis, very useful with your years of first-hand empirical experience. Thankfully this site is part of my Dr Google to familiarize myself with dupuytrens before I see more doctors. Very very useful and thanks for your interaction and time. I know You are not a doctor but you are on the front-line with empirical knowledge.

I know now that I need to do something about my dupruytren contracture sooner than later. The YouTube videos make this clear. I am keen to get NA on my left hand if Dr Griffin will do it in late March 2020. I wish it was sooner - I know there are risks.

I am still researching radiation therapy and thinking this may be very helpful for my right hand (dominate hand) as it has a palm cord developing only in the past month or two, active, mild, noticeable, but no contracture yet.

As for my left hand DC pics (posted previously) and the cord running into the ring finger second joint, well, that is still a mystery.

Does/did anyone have this and if so what complication/s does this pose regarding NA or surgery or RT?

02/05/20 14:19
dupynz 
02/05/20 14:19
dupynz 
Re: Dupuytren - When to have surgery!

Hi Cas,
I am in New Zealand and our public health system sounds similar to Australia. I don't have private health insurance so have had both hands treated under the public health system and I'm happy with the surgery I have had on both hands now (Just had my right hand done in late November)
Looking at your photos I'd say you wouldn't be considered for surgery here in NZ. On the public health system you could get NA but not the Xiaflex (collagenase injections). Here they tend to operate only when the contracture is more severe.
My left hand was done a year ago. My little finger had been severely bent for some time and being left handed it was getting to be quite inconvenient! Had it done by a plastic surgeon (don't consider any other type of surgeon if you ever do have it done). She did manage to straighten it out pretty well and I then had hand therapy and a night splint for months. The recovery to the point of full mobility and full strength in the hand is quite long in my experience, and now have had my right hand done and it is the same story, although on my right hand it is the middle finger. The cord was in one of the limbric muscles (if I have the correct term) and it was trickier surgery, I gather, but I had the best plastic surgeon for Dupuytrens in Christchurch. Recovery slow, but from a bend of 45 degrees it is now straight.

Personally, for severe Dupuytrens (which yours is not, really, so you have other options) I would not hesitate to have surgery despite all the discomfort and hassle of regaining mobility. I am pretty happy with both hands. I do know that there is no cure and that a recurrence is common, maybe five years or so down the track, more or less.
But I am 71 and with both hands the contracture developed very slowly - from about age 50 - so I'm hoping if there is a recurrence it won't happen any time soon.

Having subsequent surgeries isn't great - the hand doesn't like to messed about with.

I know someone who had Xiaflex in 2013 and it was very successful but now his finger is severely bent again and at age 84 he is not going to bother with surgery, he says.
Good luck, Cas - hope you get good advice from a doctor/surgeon as to what you should or can do.

02/18/20 03:53
Cas2019 
02/18/20 03:53
Cas2019 
Re: Dupuytren - When to have surgery!

Hi dupynz, your surgery sounds successful, makes me feel better should I have to go down that track.

I think NZ and OZ have similar public hospital systems. However, here, they told me they don't do NA procedures or xiaflex in our public hospital system, only surgery, even at my stage of contracture. I didn't want to hear that.

And now xiaflex treatment has been stopped in Australia so that option sadly is gone. Makes me think something was wrong with that treatment - only guessing.

I am booked in to see DR Griffin to get his opinion on NA vs surgery - $200 for initial appointment/chat. Apparently Medicare will reimburse me $75 of that cost so I can't complain about that. Maybe Medicare will contribute more $?

It is comforting to hear your comment on the stage of my contracture and that you think NA for me is doable. Hoping Dr Griffin agrees to do the NA procedure. I will being doing it privately so hoping the cost for NA is not too expensive.

02/18/20 12:56
dupynz 
02/18/20 12:56
dupynz 
Re: Dupuytren - When to have surgery!

Cas2019:
Hi dupynz, your surgery sounds successful, makes me feel better should I have to go down that track.

I think NZ and OZ have similar public hospital systems. However, here, they told me they don't do NA procedures or xiaflex in our public hospital system, only surgery, even at my stage of contracture. I didn't want to hear that.

And now xiaflex treatment has been stopped in Australia so that option sadly is gone. Makes me think something was wrong with that treatment - only guessing.

I am booked in to see DR Griffin to get his opinion on NA vs surgery - $200 for initial appointment/chat. Apparently Medicare will reimburse me $75 of that cost so I can't complain about that. Maybe Medicare will contribute more $?

It is comforting to hear your comment on the stage of my contracture and that you think NA for me is doable. Hoping Dr Griffin agrees to do the NA procedure. I will being doing it privately so hoping the cost for NA is not too expensive.

Hi Cas,
It has never been possible to get Xiaflex treatment in NZ through the public health system and I knew of only one person in another city who was doing it privately. I am not sure if anyone else does it privately here because when I inquired about it before I had my first hand done I was told my finger was too severely bent for anything but surgery anyway.
The man I know who DID get Xiaflex was part of a trial in 2013 so he got it done for free as a guinea-pig. The surgeon who did my right hand in November last year was the same one who ran that trial so of course I asked him about Xiaflex and he said it hadn't been approved, with a tone of regret! He works both in the private and public health systems so I guess if it was available privately he would have said so, so perhaps like in Australia it has been stopped altogether.
A surgeon did try NA on my left little finger about a year before I had the surgery but it didn't really work because I suspect it was too late for that and my finger seemed to become more severely bent than it had been.

I do feel lucky that I got my two surgeries plus all the hand therapy afterwards for free (well, my taxes go towards healthcare of course!) and as I said, a good job was done on both hands. Despite what it doesn't offer, the public health system here has served me well (had quite major surgery done a few years ago with no problems and the best of care - private room and ensuite)

Radiation is definitely not an option here for Dupuytrens in NZ but seems to be in Europe at least - maybe in Australia?
Good luck anyway, Cas - let us know how the NA goes!

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suggestions   Griffin   recommendation   Dupuytren   treatment   considering   recommendations   dupuytren-online   Australia   one-handed-ness   dupuytrens   surgeon   surgery   Xiaflex   contracture   straight   intervention   cropmode=none   spanishbuddha   unfortunately