Author Topic: Any experience with cycling and Dupuytren's syndrome?  (Read 977 times)

Any experience with cycling and Dupuytren's syndrome?
« on: November 14, 2018, 11:57:01 am »
I'm wondering if anyone here has experience of Dupuytren's syndrome (sometimes known as the Viking disease) and longer term impact on cycling?  There doesn't seem to be a really succinct definition, but lumpy collagen nodules forming in the palm of the hand that progressively cause problems to straighten fingers, so that they may even eventually become hooked.

https://dupuytrens-society.org.uk/ seems to be a good source of information.  Fortunately, only my hand is affected ATM!

I've just been diagnosed through an MRI scan, but have yet to see a hand specialist.  Currently, only my right hand ring finger is starting to be affected.  The lump in the palm is a bit annoying, e.g. when trying use a screwdriver with a bit of oomph.

For cycling, I am notice some loss of strength in the grip on my flat-barred hybrid commuter.  Drop bars seem to be more comfortable, as I ride on the hoods mostly with the web of the palm taking the weight, no strength required.

The good or bad news depending on your viewpoint may be that my clarinet playing days may soon be over :(

Any questions I should ask the orthopaedic hand specialist when I see him in a couple of weeks?

I read that I am in the company of Ronald Reagan and Maggie Thatcher, so am happy to provide any right wing points of view as needed :)

Re: Any experience with cycling and Dupuytren's syndrome?
« Reply #1 on: November 14, 2018, 03:21:05 pm »
Can I suggest www.dupuytrens.co.uk as a source of knowledge. Photos of your hand would also help. Please feel free to send a pm.




i pioneered. Wesley Aponeurotomy in the UK and probably have done and taught more than anybody in the UK. I pioneered collagenase in The UK and have probably been involved in more clinical trials than anyone else of clinical trials for dupuytrens

ElyDave

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Re: Any experience with cycling and Dupuytren's syndrome?
« Reply #2 on: November 14, 2018, 03:52:38 pm »
Only second hand, but I do know a fellow referee who was surgically treated in both hands, about 10 years ago and had a good outcome. Not sure about cycling, but he was certainly a driver
“Procrastination is the thief of time, collar him.” –Charles Dickens

hellymedic

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Re: Any experience with cycling and Dupuytren's syndrome?
« Reply #3 on: November 14, 2018, 04:38:29 pm »
I could be wrong but I believe Dupuytren's is one of those conditions that NHS England has effectively blacklisted for surgical treatment.

ETA Confirmed with fact check :(

You might have to battle for surgery. These procedures won't be totally banned as I understand it but those referring will have to make a 'special case'.

[POBI] Deeming some sorts of surgery to be 'of little value' can be very hard on patients and their GPs! Most doctors will know of folk who have certainly benefitted from these 'low value, little benefit' procedures.

Re: Any experience with cycling and Dupuytren's syndrome?
« Reply #4 on: November 14, 2018, 05:39:48 pm »
Thanks all

Chris - how awesome the YACF community is!  A genuine hand fettler.  I will PM you later.

Fortunately I do not think that surgery is indicated yet, but at the early stages of the condition, I would like do what can be done to prolong good use of the hand. Also to make use of my work private insurance for the 17 months before I retire (not that I am counting....:) )

Re: Any experience with cycling and Dupuytren's syndrome?
« Reply #5 on: November 14, 2018, 08:06:02 pm »
I could be wrong but I believe Dupuytren's is one of those conditions that NHS England has effectively blacklisted for surgical treatment.

You might have to battle for surgery.

Deeming some sorts of surgery to be 'of little value' can be very hard on patients and their GPs!

I am certain this was a politically motivated announcement to deflect from brexit news. Dupuytrens is not a plcv (procedure of limited clinical value) and this announcement has not changed management anywhere by any surgeon. It was an absolutely disgraceful and political act.

hellymedic

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Re: Any experience with cycling and Dupuytren's syndrome?
« Reply #6 on: November 14, 2018, 09:25:33 pm »
I could be wrong but I believe Dupuytren's is one of those conditions that NHS England has effectively blacklisted for surgical treatment.

You might have to battle for surgery.

Deeming some sorts of surgery to be 'of little value' can be very hard on patients and their GPs!

I am certain this was a politically motivated announcement to deflect from brexit news. Dupuytrens is not a plcv (procedure of limited clinical value) and this announcement has not changed management anywhere by any surgeon. It was an absolutely disgraceful and political act.

[POBI] Fully agree! Likewise (in your field) carpal tunnel release. I understood the median nerve was 'the eye of the hand'. How can releasing it be of 'limited value'?

Hand surgery is not my thing and I'm not very clever.

BUT!

Pedaldog

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Re: Any experience with cycling and Dupuytren's syndrome?
« Reply #7 on: November 15, 2018, 12:36:33 am »
I have Dupuytren's in the right hand, little finger and ring finger. Little finger won't straighten more than about 40 degrees to a flattened hand. Drops, on the hoods, is good. Underseat steering on recumberantings is even better as there's no weight bearing. The contractures and lump is uncomfortable, sometimes quite painful, but I'm stretching my NHS credit limit already and won't make too much of a fuss until I have to.
It started to become an issue five, or six, years ago but, so far, I can live with it.
Hope you get a good result without too much of a battle!

ETA... Bar end shifters on drops and recumbents are the easiest to manage with. Flat bars can be awkward but "Pauls Thumbies" are a life saver on the Thorn Sherpa.

Re: Any experience with cycling and Dupuytren's syndrome?
« Reply #8 on: November 15, 2018, 01:35:44 pm »
Got this in both hands which have been slightly clawed for more years than I can remember. It hasn't got any worse. I do stretch them frequently but not sure whether this makes any difference. The tendon to the third finger, R hand did break and was repaired thirty odd years ago. That finger still functions fairly well.

It's never affected my cycling. The only problem I have is picking up handfuls of spilled popcorn.  ;)
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Re: Any experience with cycling and Dupuytren's syndrome?
« Reply #9 on: November 15, 2018, 04:35:19 pm »
When I first read your description, I assumed this was what my father had, but a little research revealed that not to be the case.

Our family have inherited Camptodactyly, usually expressed in the little fingers. One of his was bent through 90 degrees, the other less so. Had been so since birth. My brother had one little finger bent a fair bit but this lessened with age and much stretching (trying to learn the violin probably helped).

Mine are mostly straight, but one finger deviates sidesways (people assume it has been broken; nope, always been that shape).
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Re: Any experience with cycling and Dupuytren's syndrome?
« Reply #10 on: November 15, 2018, 10:05:37 pm »
Sideways deviation is clinodactyly rather than camptodactyly. Interesting that it runs in the male line. I have not come across male inheritance and do not know of a reference. Female inheritance is common but not infrequently skips generations.

Re: Any experience with cycling and Dupuytren's syndrome?
« Reply #11 on: November 16, 2018, 07:46:41 am »
Sideways deviation is clinodactyly rather than camptodactyly. Interesting that it runs in the male line. I have not come across male inheritance and do not know of a reference. Female inheritance is common but not infrequently skips generations.
I couldn't say that it runs in the male line, I don't have any sisters. I have a feeling that one of my cousins (born to my father's sister), has a slightly crooked finger, so it might be passed down either line.
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Re: Any experience with cycling and Dupuytren's syndrome?
« Reply #12 on: November 16, 2018, 01:57:54 pm »
There were 3 of us camping in the lightweight section at Mildenhall. We each had it in out right hand, it bent our little fingers. The same medical advice for each of us was, live with it and leave well alone as the operation (not on NHS) often does not give a good outcome. The one guy had been back to his doctor after seeing an episode of Dr Martin were he did the surgery in his practice. He was told that in reality that would be extremely unlikely to happen and not to believe all he sees on TV.
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Re: Any experience with cycling and Dupuytren's syndrome?
« Reply #13 on: November 19, 2018, 08:52:22 am »
There were 3 of us camping in the lightweight section at Mildenhall. We each had it in out right hand, it bent our little fingers. The same medical advice for each of us was, live with it and leave well alone as the operation (not on NHS) often does not give a good outcome. The one guy had been back to his doctor after seeing an episode of Dr Martin were he did the surgery in his practice. He was told that in reality that would be extremely unlikely to happen and not to believe all he sees on TV.

I am sorry to disagree with almost everything in that post. I am glad to say that I am. Or disagreeing with you but your doctors.
I have treated personally several thousand people with Dupuytrens using needle aponeurotomy with excellent outcomes. If you are not offere NA then ask as you should be offered the choice.

Treatment is available on the NHS as soon as you reach 30degrees of bend.

The results of NA and newer collagenase are excellent. Surgery has more risk of complications.

hellymedic

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Re: Any experience with cycling and Dupuytren's syndrome?
« Reply #14 on: November 19, 2018, 03:40:55 pm »
My experience of treating this condition is VERY limited and outdated BUT
I recall extreme cases having amputation of the little finger to relieve symptoms.

It strikes me that almost any treatment to forestall this eventuality must be of benefit.