33 year old with pretty nasty looking Dupuytren's - photo included, advice appreciated...
Hi
Just came across this brilliant website after deciding to introduce myself to the world of DC sufferers. Hello my friends! I'm 33 years old and the 'proud' owner of DC in the left hand. My affliction has developed pretty badly over the past year, after previously just appearing as the remnants of botched-up trigger finger surgery I had a decade ago (and probably some unnecessary stretching on my part).
At the moment I'm still at a 90 degree angle, albeit with some rather large nodules which is stretching the skin quite badly. Usually I make a laugh of it and draw a couple of faces on (see 'Larry and Barry' in the new Mad Max!) I've generally had a pretty relaxed attitude towards it, thinking that it was only superficial - but then I found out my uncle had DC too, so realise it's probably genetic. Also, after seeing how white it was after an hour's run this morning in the cold, I've decided I need to start treating the damn thing.
Really interested to hear what you folks think I should do. I saw the hand consultant on the NHS recently who said that I would need surgery eventually - he didn't offer any other advice. I've read on other website's that massaging the nodules with lanolin oil is a good idea, but others say that stretching makes it worse.
Would really appreciate some advice on this, being a DC novice n'all.
Re: 33 year old with pretty nasty looking Dupuytren's - photo included, advice appreciated...
Hi Jimbob, sorry to hear you have developed nodules at such an early age. Your fingers look straight to me, so that would be a 0° angle vs. normal.
I recommend you monitor closely for any progression, especially the formation of cords which reduce elasticity of the tendon and will eventually make your finger bend. Make yourself knowledgeable about Radiation Therapy (RT), and if you don't want to go that way, watch out closely for your finger tightening up. A good way to monitor this is to put your hand flat on a surface and pull your fingers upwards one-by-opne with the other hand. You should be able to lift your fingers up quite a bit. When that is no longer possible, that is when you can expect contracture as the cords along the tendons are tightening. It is then still possible to have RT if your competent doctor judges you are in an appropriate stage. After that the cords can be broken with the NA/PNF needle procedure or collagenase enzyme to avoid later open surgery. Look around the website for literature and description of the treatment options availabe today.
Try to avoid hand injury or excessive strain and other than that live a normal life.
Good luck from a fellow patient with opinions based on his own experience and reading.
Re: 33 year old with pretty nasty looking Dupuytren's - photo included, advice appreciated...
Hi jimbob
Nasty looking cord, could be getting ready to develop a contracture. How long has that been developing, and is it sore and still progressing now? If so RT is still an option.
There is NICE guidance for RT on the NHS, but due to tight resources and lack of knowledge this is quite difficult to get. You would have to be pushy and patient with your GP, the local hospital trust or CCG. My experience of this is that it may take too long to battle the bureaucracy all the while your hand gets worse. Alternatively you could have it done privately, there are two London clinics shown on the BDS website that have good experience.
If a contracture develops then NA is available on the NHS, and Xiaflex too if done user the auspices of research. There is NICE guidance for NA; and a recommendations on the conditions for Xiaflex although not approved directly. Both of these would be preferable to surgery. Again both are available privately too.
Stefan offers good advice, monitor its progress, research your treatment options, make contact with clinics or doctors who could treat you. But right now, if the disease is active RT is about your only option. Steroid shots help some, usually short term symptomatic relief, and there are reports of massage being helpful, but nothing is certain in all cases.
Re: 33 year old with pretty nasty looking Dupuytren's - photo included, advice appreciated...
Thank you guys for your helpful responses.
To provide an update and also answer a couple of the questions that were raised...
I've been to the GP, and I have to say it was an unhelpful visit. He advised that there was nothing that could be done until it got worse i.e. wait until the digits start contracting then have surgery. Great. What was frustrating about this is that on NHS choices, it seems that there are a load of options available. Maybe this is the first step of the bureaucracy your referred to SB? When I mentioned this he shot those options down in flames and told me to just straighten the fingers as much as possible, by placing the palm flat down and then raising it using the fingers.
Can I ask - should I be trying to do this? I.e. actively trying to straighten out the cords/break down the nodules? I've heard this can aggravate the problem?
Steffan - when I do the hand test, I can raise my fourth digit about a finger width upwards; with the pinky, about 4cm with exerted force.
I have been looking at video's on Youtube to see if I can find any solutions - one of such is rubbing lanolin oil into the nodules, so I've bought some of that. Another revealing post was one which talked about a link between C8 of the cervical spine and the pinky finger/4th digit on both hands - this is interesting to me as I'm currently seeing a chiropractor about fixations along my spine, with some particular issues around the sterno-clavicular joint. Nightmare!
SB - to answer your question, the DD has got worse since I started having these issues with my back and neck, about 9 months ago. Before that I just had a noticeable scar from the trigger finger surgery I had when I was 17.
Another interesting video I came across talked about using a combination of magnesium oil, saturated potassium iodide and DMSO as a mixture to massage the nodules. I haven't ordered these yet as want to give the lanolin oil a go.
In conclusion, I'm confused, frustrated, and dreading the next term in my job as a teacher. Marking books is an absolute nightmare at the moment with my back and neck, but luckily I'm right handed and haven't got DC in that hand...I hope. Although it clicks like mad, as done every other joint in my body - yet another ailment I've seemed to pick up! It's hard to stay positive but I'm trying to stay active, that's for sure.
Thanks for your help with this. I would really like to avoid surgery as I know that this isn't great in the long term. RT and NA seems like less invasive treatments.
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