Cycling UK Forum

simonineaston wrote: ↑14 Sep 2021, 8:51am

Jdsk wrote: ↑2 Sep 2021, 5:54pm I always recommend patients to look out for research trials for which they are eligible. As well as the contribution to future knowledge and care there is some evidence that outcomes are better whichever treatment you get.

Interesting idea - how does one find out about them?

Ask your own clinician, check with relevant patient groups, and with specific disease associations. Straight web searches would probably work now as well.

Apart from the better outcomes we know that we underrecruit to trials. Thanks to everyone who has volunteered for trials and surveillance studies related to the outbreak, and I hope that this will expose the need to improve this.

Jonathan

Thanks.
And back to D's C. I started to experience some symptoms myself, some years ago, inc. the discomfort desrcribed by Paulatic. Since then, the symptoms including the discomfort, have declined. No discomfort at all now, just that the tightness/thickness of palm tissue means my little fingers on both hands are slightly bent. Seems to have stablised. So I guess what I'm saying is, for those who are experiencing discomfort, there is some good news in that mine went away, so I guess yours might too ! (Always consult your GP for best advice, tho')

Early treatment of Dupuytrens (stage 1) prior to contraction of the fingers and where the nodules are treated can prevent contracture completely. It is simpler too as it doesn’t involve open fasciectomy, which is still the gold standard.

My Dupuytrens doesn't seem to have progressed since 2019 viewtopic.php?f=49&t=132211&p=1390670#p1390670
I'm still in the habit of straightening out the affected fingers

Progression seems to be hugely variable between cases at different ages. One surgeon I consulted with suggested diet and lifestyle choices were factors in this, smoking and alcohol were particular problems.
I've been a participant in a 5 year study from the start and look forward to reading the findings.

Some people seem wary of the surgery, I had the open fasciectomy done by a well known hand surgeon, and it was totally painless other than the initial local injection which was no more than any injection. It took 15 minutes and within a couple of weeks my finger was perfectly straight and I was using it as normal. That was 10 years ago and it's still perfect with no signs of it having been done. Choice of surgeon I believe is the most important factor.

PhilD28 wrote: ↑14 Sep 2021, 10:37am Early treatment of Dupuytrens (stage 1) prior to contraction of the fingers and where the nodules are treated can prevent contracture completely. It is simpler too as it doesn’t involve open fasciectomy, which is still the gold standard.

Yes. My father in law suffered from it. Mother in law, a retired physiotherapist, often told him to get treatment or he might have to have his finger amputated. He didn't listen and eventually lost the finger. It seems early treatment is paramount.

Optimal choice of treatment and timing isn't clear. Most guidelines advise discussion between and joint decision by the individual patient and a specialist.

Jonathan

PhilD28 wrote: ↑14 Sep 2021, 10:37am Early treatment of Dupuytrens (stage 1) prior to contraction of the fingers and where the nodules are treated can prevent contracture completely. It is simpler too as it doesn’t involve open fasciectomy, which is still the gold standard.

That's good to know, my grandfather had severe contracture (ring and little finger touching palm, middle finger usable, but very limited since it's restricted by the outside two).

When I was very young I waved back with my hand in the same configuration.

My father's is less severe / later onset / better treated, but it's something I expect to see at some point - but I'll need to keep it at bay, contracture and wheelchair use aren't really compatible.

Jdsk wrote: ↑15 Sep 2021, 7:30pm Optimal choice of treatment and timing isn't clear. Most guidelines advise discussion between and joint decision by the individual patient and a specialist.

Jonathan

The curent problem when going via GP's for a referral to an NHS consultant is that the guidelines (according to my GP) say that treatment isn't required until there is at least 30 deg of contracture, so getting an early stage referral other than going private is difficult. Quite a bit of research has been done on early treatment to prevent contracture, sometimes a simple cortisone injection can work or possibly radiation therapy treating the nodule, dependent on the case, can stop it before it develops but only in stages N and N1.

PhilD28 wrote: ↑16 Sep 2021, 2:57pm

Jdsk wrote: ↑15 Sep 2021, 7:30pm Optimal choice of treatment and timing isn't clear. Most guidelines advise discussion between and joint decision by the individual patient and a specialist.

The curent problem when going via GP's for a referral to an NHS consultant is that the guidelines (according to my GP) say that treatment isn't required until there is at least 30 deg of contracture, so getting an early stage referral other than going private is difficult. Quite a bit of research has been done on early treatment to prevent contracture, sometimes a simple cortisone injection can work or possibly radiation therapy treating the nodule, dependent on the case, can stop it before it develops but only in stages N and N1.

Current NICE guidance on referral:
https://cks.nice.org.uk/topics/dupuytre ... anagement/

Jonathan

Yes, that's pretty much what both my GP and consultant told me.

It seems that unless you have a tenacious GP an early stage NHS referal is unlikely despite the latest research showing how early treatment saves both NHS money and patient discomfort in the long term.

For those with professions that require good dexterity, musicians etc., early private treatment may be a good investment or in fact their only option.

I asked the specialist if I'd be able to play the violin after my surgery.
She replied, "Could you play the violin before?"
I replied that I couldn't, and she said, "I can't remember how many times I've heard that joke before ...................... "

Sufficiently often that she already has the first response as a question.

Mick F wrote: ↑1 Sep 2021, 2:51pm I'm offered - and accepted - a treatment by a local anaesthetic to relieve the contraction. If it's a success on one hand, to do the other some weeks later.

I have an appointment at 13:30 today at Derriford Hospital, Plymouth.

Mrs Mick F will drop me off at the hospital or nearby and spend some time doing some retail therapy. I'll ring her when I get out and she'll can collect me and then drive me home ............... I doubt I'll be able to drive safely with one hand.
They'll probably do my right hand today, but both are as bad as each other.

Back by tea time.
Wish me luck!

All the best! I had a small op on my hand the other month - carried out by a surgeon whose name was... Vlad !