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Rock climbing link to Dupuytren's disease (Read 124008 times)

webbo

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not any old book it needs to be a king james bible.

SA Chris

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Hit it with a book, thats what my gran said, she did it to hers years ago and it never came back apparently  :)

That's a ganglion. Different lump completely. I think the Good News version will work as well. Climbers can use Yorkshire Grit Guide.

Johnny Brown

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Though the Lancashire guide would be better.

Paul B

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Has anybody had any experience of using DMSO on a contracture:

http://www.dupuytrens-contracture.com/dupuytrens-treatment-DMSO.html

Dylog pointed me at it after finding it useful on a number of other things. A bit of reading suggests the DMSO and MSM might be darn good on scar tissue.

GCW

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There's only a couple of studeis looking at it, mostly small and old- it hasn't been proven to be beneficial.  Not much help to you I'm afraid, but that's the SCIENCE (or lack of it).

sidewinder

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Posting on this thread as it seems the newest of the three?

It seems I have been initiated to the UKB/DC club, I am guessing the secret handshake is maybe a fist tag (I hope not because I find them irritating)?  I had suspicions that I have been developing it for a while (~year) and one of the Hallamshire physios said he was pretty sure it was indeed DC during a free consultation at Cliffhanger, cord like line of thickening, in the palm along the line of my little finger tendon on both hands.  No contracture yet and only occasional tenderness after aggravation.

I find the information available somewhat frustrating to say the least.  Stretching/massage may help or hinder (I tend to stretch and massage it a bit, but not to the point of aggravating it).  The new drug looks a bit dodge if you are a climber, pretty sure I don't want anything injected into my hands that eats away at tendons.

I am tempted by the radiotherapy option, especially due to the line here

Quote
If you are somewhat older and develop a nodule then probably you will not develop serious disease and radiotherapy is not worthwhile. Conversely if you are 25 and already have nodules starting I would consider radiotherapy almost mandatory.

As a 25 year old with nodules starting it makes me think it might be worthwhile being proactive.  Has anyone actually been to see anyone (a hand specialist) about their Dupuytren's?  I am tempted to try and get a referral to the guy who set up the page I linked as he obviously has a pretty strong interest in it and Derby is pretty convenient from Nottingham.  Coincidentally a friend has seen this guy before about his badly broken wrist and described him as being a typical consultant (a bit arrogant etc.), but one who probably knew his stuff, any further info would be welcome, I am a little wary as he seems to be somewhat involved and very keen on the drug option so I expect him to be peddling that.

I might even try and set up a bit on the ukb wiki to collate some of the info in the many threads and the internet, be interesting to see if we can get any consensus on what, as a climber seems to be the best way to manage it.

Clart

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Just read through this thread as have noticed a tell tale lump on right-hand. I think I can pin it down to an undercut guppy hold on a problem I was trying, felt the fascia strain as I pulled on. Felt some expected mild discomfort for a while after and just assumed bruising. This happened just over a week ago. 2 days ago I felt the hand and noticed a slight lump just south of ring and little pinky. Have 3 climbing friends with varying degrees of DC and they seemed to think it was early onset of DC. Thought I'd report it here for info. Anyone had any further results with treatment? For the record, one friend who had acute DC had the op and it didn't go well. Has put the other 2 of having it.

tregiffian

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Diagnosed with pinky DC by an Army medic at the top of Economist`s Climb at Pordenack C. 2001 age 58. He mentioned Vikings and Margaret Thatcher. Very lumpy below ring finger but still 95% useable after a decade of mainly benign neglect. My ex-marines pal has had z-plasty on his middle finger and is right as rain.

Bonjoy

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I had the needle op at the end Feb this year. Had pretty bad contracture in back two fingers on both hands. The op took 45 mins, I now have flat hands again, though obviously still lumpy with DC tissue. Was climbing again within four days. No doubt I will have to have repeat treatments down the line but so far so good. The operation was very low stress and recovery time is minimal. I would recommend it fully to anyone getting to the point where something needs doing. The traditional open hand surgery procedure is way over the top as a first line treatment IMO. Have the needle, if it doesn't last have it done again, if you get sick of this then and only then consider the Z-plasty. Beware uninformed GPs railroading you into the Z-plasty, most don't know any better.

Bonjoy

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There aren't that many practitioners doing the needle op however. Best bet is to get a private consultancy with this guy - http://www.dupuytrens.co.uk/ , between  him and your GP you can then get put on his NHS waiting list.

SA Chris

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anyone getting to the point where something needs doing.

Out of interest, what was this point for you? My pinky finger one is about 1" long still, not grown in a couple of years.

GCW

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One important factor is the resting positions of joints.  The MCPJs taughtest position is in flexion so you can leave these fixed flexion deformities longer, as they corrext better due to lack of capsular tightening.  The PIPJs and DIPJs position of greatest caspular tightness is in full extension, so if you leave a flexion deformity long enough you end up with capsular tightening that may be difficult to correct.

At the end of the day, it's a balance between how much trouble you are getting from the contracture against any risks for correction.

I'll be interested to see more extended results for Xiapex.

Bonjoy

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anyone getting to the point where something needs doing.

Out of interest, what was this point for you? My pinky finger one is about 1" long still, not grown in a couple of years.
It’s the level of contracture that I’d be watching. The DC tissue/cords without contracture wouldn’t benefit from needle treatment and you actually need some level of contracture in order for the needle procedure to be effective. Can you still put your palm flat down on a table top? If so you have no significant contracture. My little fingers were both at about 45 degrees to the palm at best and ring fingers about 30. They had been pretty bad for a while, probably hadn’t been able to put palms flat on a table top for maybe three years.
 The two factors to consider are: how functionally disabling is your DC and how long do you dare leave your joints in a constrained configuration (as GCW says, there is a risk of impeded recover if a joint is in a contracted state for a prolonged time). For me the functionality issue mostly boiled down to how much my climbing was hampered. Prior to the op I couldn’t hand jam, palm off slopers (makes toping out tricky!), my crimp was starting to feel noticeably weakened and I was getting wrist pains which I attributed to having to use my hand in a distorted configuration on many types of holds. I dare say I was pushing the risk of unrecoverable damage by leaving the op as late as I did, but I’m glad to say they have recovered very well.
Part of the reason I left it late was that there are obviously risks (tendon/nerve damage, infection, or aggravation of the condition leading to general worsening of cantracture) to any treatment option which could conceivably have ended my climbing, so I didn’t want to have the op early while I could still climb relatively unhindered.


PS. Early stage DC (as yours sounds like) would probably benefit from radiotherapy. This might stop the condition in it's tracks before it becomes a problem. Unfortunately this is not available on the NHS and would cost I was told approx £3000.

Bonjoy

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I'll be interested to see more extended results for Xiapex.

Me too. When I went to see the guy who carried out the needle op he recommended that I have the Xiapex treatment. After going away and thinking about it and looking into it further I decided I was not keen and told him I’d prefer the needle.
Rather than try to rehash my reasons for this here's an excerpt from the letter I wrote requesting NA rather than Xiapex.

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Dear Dr Bainbridge,

 Thank you for the recent consultation. It was good to talk to you regarding my Dupuytrens and I appreciate your recommendations on treatment options.
 At the time of the consultation I had was not aware that Xiapex was an available treatment in the UK and had not considered it closely as an option. Subsequent to your recommendations I have had time to look into it more closely.
 For reasons I’ve outlined here I would feel more comfortable opting for Needle Aponeurotomy as a 1st stage treatment.
•   The risk to nearby tendons appears to me to be greater with Xiapex than with Needle Aponeurotomy. As someone involved in relatively high difficulty rock climbing the stresses I put through finger tendons are well beyond those generated by everyday use and I fear that however comprehensively Xiapex has have been trialled it will not have been used on many people who put such extreme stresses on their finger tendons (i.e. higher standard rock climbers). A ruptured finger tendon would be a devastating blow to me and as such I would rather accept the likelihood of other problems associated with NA (e.g faster recurrence) rather than take this particular risk.
•   The possible advantage of Xiapex over NA is an increase in the time between recurrence and hence the need for repeat treatment. I haven’t looked into this exhaustively but have not found any significant claim for this in the manufacturer’s literature. I’m guessing it is too early in its use to carry out a study to assess this. So I am not entirely confident I would gain in this respect. Also this advantage would be offset somewhat by a longer convalescence (I think you mentioned a minimum of a month off climbing per hand), the need for two visits per procedure and more side effects. I think on balance at this stage I would rather risk more frequent treatments with NA rather than less frequent but more disruptive treatments with Xiapex.
•   Opting for NA now does not appear to rule out using Xiapex later if the NA does not work out. By the time repeat treatment is required I am hopeful that Xiapex will have been in use for some time in the UK and there will be more comprehensive information about it more widely available.

 Also what I didn't mention in the letter was that I was not comfortable being one of the first few people he would have been carrying out a new treatment on. Even the best practicioners are likely to make a few errors while developing a new skill.
It's certainly something I'll look into though next time I need my hands fixing.

SA Chris

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Can you still put your palm flat down on a table top? If so you have no significant contracture. My little fingers were both at about 45 degrees to the palm at best and ring fingers about 30. They had been pretty bad for a while, probably hadn’t been able to put palms flat on a table top for maybe three years.
.....
Early stage DC (as yours sounds like) would probably benefit from radiotherapy. This might stop the condition in it's tracks before it becomes a problem. Unfortunately this is not available on the NHS and would cost I was told approx £3000.

Mine is nowhere near a point where I need to do anything about it - only about an inch on my right hand, with only a dimple like deformation of skin. I was just asking from a point of reference.

You are probably right on the radiotherapy, but unfortunately i don't have 3K to spare, and I don't think our company private healthcare will stump up for it.

As an aside, the only time I have noticed any progressive increase in growth of mie was over a period when I was taking Glucosamine regularly. It stopped not long afterwards. Now I'm sure some statistical smartarse will be along to say that it proves no link, but I'm just saying......

Bonjoy

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I've read that Glucomsamine agravates DC. I used to take it and then decided to stop. Hard to say what effect it had on me.

sidewinder

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I am like Chris most probably in the very early stages, in my case the lumps are barely visible and I only noticed because of the discomfort I get if I try to cup jugs (serves me right for puntering around on jugs!), physio and gp confirm probably Dupuytrens + my granddad had it!  Veen trying to get a appointment with the Bainbridge guy for confirmation and to discuss the radiotherapy option but it seems to be taking some time, I need to chase this up, especially as he is just in Derby and I in Nottingham.

Am very interested in the radiotherapy option, don't really have 3k to spare, but think I would probably try and find it if the opinion is that it will probably stop/reverse the condition, as some of the literature seems to suggest.  As with the Xiaflex option I am a bit worried as to how much the radiotherapy option might influence general tendon strength?  Also 3k that I don't have is definitely a lot to spend if it ends up not helping!  From what I have read, even if you have private medical insurance non of the current providers currently cover it.

Pleased to hear the NA procedure went well Bonjoy amazed the downtime was so short, I would of imagined the needle puncture holes would be too sore to allow climbing for a bit longer than that,  [internet stalking moment] saw you (I think) at Raven Tor last week and I remember thinking it didn't seem long since you said you had had the op[\internet stalking moment] having read up NA was the option I would currently go for once mine gets bad, though hopefully it won't/they will have developed something new by then!

It would be nice if there was any info on possible ways to hold it off.  I tend to lightly massage and stretch mine, as well as avoiding jugs, irritatingly some sources seem to suggest lots of stretching etc. whereas others seem to suggest too much stretching/massage can aggravate it and make it develop faster, hence my softly softly approach.

Bonjoy

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Because the progression is very erratic and unpredictable, coming and going without obvious pattern over a period of years, I'd imagine it would be v hard to distinguish what things helped/hindered

tregiffian

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Saw the senior, long served, hand consultant in Cornwall. Not prepared to put the needle into my pinky DD lumps asserting that folk tended to be back in a few months with the relevant finger crooking in. If it ain`broke.......... He had no truck with links to climbing or manual work and suggested that the Celts might have blame to shoulder though their gene pool could have been muddied by marauding Viking pillagers.

slackline

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....Celts might have blame to shoulder though their gene pool could have been muddied by marauding Viking pillagers.

Online Mendelian Inheritance in Man : Dupuytren Contracture < Summary of what is known about the genetics (inheritance pattern shows incomplete penetrance, at one locus on chromosome 16, which means that not everyone who caries the alleles/genotypes will develop the phenotype of contracture).

Bonjoy

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Saw the senior, long served, hand consultant in Cornwall. Not prepared to put the needle into my pinky DD lumps asserting that folk tended to be back in a few months with the relevant finger crooking in. If it ain`broke.......... He had no truck with links to climbing or manual work and suggested that the Celts might have blame to shoulder though their gene pool could have been muddied by marauding Viking pillagers.
Same old, same old. As I've said before, it might be a coincidence that the young climbers I come across seem to have a vastly higher incidence of DC expression than the general population, or it might be (if you really want to be a pedant) possible that the gene for DC is linked to a gene which makes people want to become a rock climber, but it seems more likely to me that climbing brings on DC rather than vica versa or that there is no connection. But I see no reason why a hand specialist who doesn't come across lots of climbers, in the absence of any major studies on the subject, would draw the same conclusions and I'm not surprised when they don't.
If your DC is still at the stage of lumps rather than cords then he is right, sticking needles in them would undoubtedly do more harm than good. Your choices are radiotherapy or wait for contracture and then decide on preferred surgical option.
I can only go on my own experience and the experience of others I've met who have had both NA and/or open surgery. Neither myself or the other chap who had NA have suffered the rapid recurrence your doc says 'tended' to happen. We had no lengthy recovery period and were climbing again within days. This is in contrast to folk I know who have had open surgery and were out of action for months. One chap who had open surgery on one hand and NA on the other said he was way more satisfied with the NA in all respects and wished he'd known about it when he had his first hand done. I'm not claiming this proves anything.

slackline

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Man with sausage collection foils terrorist plot

Not at all suggesting that there isn't a link between DC & climbing, just that...




If anyone is seeing a consultant about DC why not ask and/or encourage them to investigate the possibility of a causal link between climbing and DC?  I know a plastic surgeon in Manchester I used to work with who was interested in looking into the genetics of DC about eight or nine years ago and could put people in touch.

Bonjoy

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Yes thanks for that patronising statement of the obvious.
I didn't claim causation, just said it seemed the most plausible explaination from my limited experience. Do I really have to do a longitudinal study any time I want to make a qualified statement?

slackline

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It wasn't meant to be patronising in the slightest which is why I used a cartoon to convey the obvious in a convivial manner.

Having read some of the literature on DC a number of years ago increased physical activity using the hands such as manual labour (albeit not specifically climbing) shows no higher incidence of DC.  <obvious>This is why yourself and others get the responses noted.  Without further investigations this isn't going to change for other climbers who find themselves in the same situation.</obvious>

I genuinely think that its worth investigating further, and most of the NIHR funding streams like to see public & patient involvement (or PPI, the NHS love acronyms) in research proposals (in fact its one of the criteria that without which applications often aren't invited to the full proposal stage, particularly the Research for Patient Benefit stream, although thats inappropriate for this stage).  So given yourself and others are in contact with specialists who are in a position to undertake the early stages of investigating the higher incidence that you are observing it would seem the perfect opportunity to encourage such research (although I do appreciate that not all consultants care for undertaking research, nor is everyone who is afflicted by a particular condition interested in being involved in research into the aetiology of the disease).  <obvious>It might not benefit yourselves, but future generations might be grateful and it would further the depth of knowledge and understanding in the medical community about DC rather than being observations noted on forums.</obvious>

Bonjoy

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Fair enough, sorry about the snippy reply in that case.

I did talk about it briefly with the specialist I saw and told him to expect a glut of climbers in the next few years.

 

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