UKC

My Dupuytren's needs treating again approx 5 years after Xiaflex treatment

Does anyone know of any studies that say whether Needle Aponeurotomy or Xiaflex is better?

ie. which is likely to last the longest before having to redo it

I'm avoiding the surgery approach at the moment

Thanks

In reply to Carless:

Hi Carless,

There’s a useful UKBouldering thread on that here: https://ukbouldering.com/board/index.php/topic,4609.125.html

I know one chap who had the needle op nearly ten years ago and he hasn’t needed another since.

Nick

In reply to Carless:

Hi Carless,

I don't know which is best but I did have needle ap back in 2009. I was told at the time that there was an 80% chance that the condition would return within five years, which it has, my hand is covered in lumps and bumps. But......it will still go completely flat without any arching or curling of the fingers, so I'm calling that a success. Good luck with your choice and treatment.......Jeff

In reply to Carless:

I had needle aponeurotomy more than 7 years ago and my finger is still pretty straight, although becoming a bit tight (I can straighten it with my other fingers straight, but can't stop it curling when I bend my other fingers, for instance).

To be honest that's a better result than I was expecting and I'm resigned to perhaps having it done again in a few years' time.  Last time I had almost a 90 degree bend in my finger by the time I got it fixed and the tipping point was when I could no longer do the thin finger jams at the bottom of  Baby Robbins (5.9)! 

A lot depends on exactly where your contractures are and how widespread.  I'm lucky in that mine is pretty localised to the flexor tendon of my little finger.  It's trickier if it's in the fascia of your palm.

Edit: to answer your question about Xiaflex, the advice I was given was that using collagenase was trickier (and more painful) and, for a localised problem, ran a greater risk of rupturing the tendon - they basically inject the enzyme, wait for it to work and then just forcibly straighten the finger don't they?  However, again, it all depends on where the problem is. 

In reply to Carless:

Are these treatments that are available on the NHS? My Dupuytrens isnt at all severe yet, but when I went to see my GP about it he said nothing was available on the NHS and I would just need to live with it however bad it got.

In reply to Martin Haworth:

I don't think that's true, but going private is definitely helpful.  My GP did refer me to the local orthopaedics department (North Staffs) where they basically told me to go away and come back when it was much worse (even though they agreed that this might result in permanent damage to the PIP joint).

In reply to Carless:

Have you considered radiotherapy? I opted for radiotherapy for my Dupuytrens in my right hand four years ago. At the time I had two very prominent lumps that were causing problems. Now you can hardly see anything and I have no issues. 

In reply to Martin Haworth:

That's what they told my dad in 1965. Things have moved on since then (I thought) I had my first NA treatments in Paris (the French invented the process - hence the name) The best outcome I've had was from a full operation on my little left finger. The surgeon was Spanish -unfortunately he returned to Spain soon afterwards

I've had several procedures on my right little finger since then (IIRC thanks to the same surgeon as Dave Garnett ) the last time 3 years ago. It was suggested then that I might not need to go again, because   it tends to become less virulent with age (73 now) 

The trouble now is, of course, that everything has changed post-pandemic, and the backlog must be huge (and NA is still not approved of by many a medic) A lot

 of info on the Dupuytrens forum

In reply to HB1: When I went to see the GP I thought by taking action early and before it was a problem I would be saving myself from more aggressive treatments in the future. The GP wasn't interested, I have private health insurance but he said there was nothing could be done and refused to make a recommendation to my insurers.

My father (who is now in his late 80's) has his little and ring fingers curled up very significantly and has done for many years. He never saw a doctor and didn't even realise what the issue was or that it had a name until I told him. He just assumed it ran in the family as his mother and grandfather also had the same.

In reply to Martin Haworth:

Same story when I visited my GP.

In reply to Carless:

I was suffering badly some years ago, went to see my GP and was referred to a North Wales Dupuytren's specialist, a Mr Sakamuri. He was brilliant and very enthusiastic - loves his work. He measured the angle of my little finger and the one next door with a protractor and suggested Xiaflex. On the first day of the treatment the palm and affected fingers were injected at various spots 5 times with the collagenase and then padded and bandaged securely due to the skin and tissue becoming very tender and vulnerable. Couldn't drive and quite painful. The following day, back to the clinic and given local anaesthetic in the hand. Then the fun part. Mr Sakamuri grabbed my hand and little finger and STRAIGHTENED it! A little discomfort but the sound it made was quite disturbing - like breaking a twig. Then the other finger... My hand was then measured for a splint of resin and velcro straps to keep the fingers straight at night. It was very tender for about a fortnight with scabs forming at the injection sites, then it was light use for about a month. 

This was over 5 years ago and the fingers are still straight as a die and all on the NHS. Great service.

ps. other hand is now almost due for treatment.

In reply to Martin Haworth:

Mine was fixed on the NHS. It depends how bent the fingers are. Two years later it is still OK. Took about 4/5weeks before I was climbing again. Hope this helps. Keep pushing you gp though if you are not getting anywhere. Is it your writing hand etc helps.

Thanks for all the comments

I've had Xiaflex in both hands some years ago and it was successful (though the initial injection was surprisingly painful)

I might try the Needle Aponeurotomy this time to see the difference. Also it has the advantage of being only 1 visit

I don't know what it's like the the UK. In Belgium the injection is done in the doctor's office but the snapping the following day had to be done in an operating theatre. The doctor said it's daft and that he could do it in the local bar, but he was happy as it allowed him to charge me more money

In reply to Carless:

I had the fasciectomy op a year and a half back.

Incredibly successful, for both climbing and guitar playing.

The needle a year before didn't work as the bend came back, but the surgery has been brilliant. The clinic in Carlisle is run by consultant colleagues Mr John Harrison and Mr Jagannath Chakravarthy, orthopaedic surgeons from the Queen Elizabeth Hospital in Gateshead.

DC

In reply to Dave Cumberland:

You just need to be careful what you ask for, or you might get a snip where you weren’t expecting!