Dupuytrens fassciectomy

dotty123

Hi everyone, would like to ask a question, has anyone got or had Dupuytrens contracture ?

I had a hospital appointment on Friday as I have 2 fingers curling in and cannot straighten them. I have several lumps in the palm of my hand and lumps on the inner side of the knuckle.

He says I have agressive Dupuytrens.. but wants to leave it for another 5 months and review a time for surgery. He wants to cut the whole lumps out of my two fingers and I am to have a skin graft :O

He said I am quite young to have it too ( 44 yrs ) I know it is rare , the worst down side is having fingers amputated if left too long.. But would like to have some fed back please.

Not worried about scars.. am worried about losing work and money.. as I only work part time. Most of all... would like to keep all my fingers

Hope you all taking care

xx
Dot

suzygirl

Hi Dot

I am 40 and have had the contracture for about 3 years now. I can't straighten my hand or my little finger. The lumps in my palm are quite large and itch a lot.

My rheumy doesn't say anything about it. What you have been told sounds scary. I wonder why, he has told you to wait 5 months?

I know it is rare, I was told mine was common in RA. I have SLE and Sjorgens ( ?) What type of arthritis do you have?

I will be interested in your feedback as it seems to be unusual and often seen in much older people.

dotty123

Hi thank you for your reply. I have OA ! mostly in my hands. My lumps started to appear about a year ago and are getting worse as time goes by.

He says if he operates to early then it will come back. But also you can't leave it too late. It's about timing. He wants to see what difference there is in 5 months before he can give an exact date to operate.

He will not remove the lumps in the palms as he says they will re-apppear also. The main thing is to straighten my fingers. But he wants to take a good chunk out and that means a skin graft.

I had a lump removed from my finger about a year ago and it grew back straight away. He admitted that he didn't think at the time it was Dupuytrens, as there wasn't any other signs. It really has came on fast

I hope this helps, let me know

x

Soretoe2

Hi Dot,
I had the op about 10 years ago when I was 50. Sadly for me it only worked for a short while and then came back. I was told there was no use doing it again as this does happen sometimes, the strong genetic component forces it back again.
However most people get a good result so I would always advise to have a go as it could be a success and that's wonderful. Joy

frogmorton

Hi Dotty

Nice to see you - can't help you just wanted to wish you luck. I know it's a tricky one this as i do know someone who has had it done - as it can come back. Let's hope in 5 months time it can be treated and doesn't come back eh?

Love

Toni xx

jillyb1

I too have dupuytrens , all 4 fingers are curled down and touching my wrist , my thumb still has movement . I decided against the op as I was told one of my fingers will probably be removed and that the three left , although looking better and straighter ; would most likely not be usable . As I'm a vain person on the quiet , I decided I prefer to keep my hand as it is having adapted and become " used " to it this way ! Jillyb

dotty123

Thank you for your replies tho I am a little disappointed to hear that it can come back. Jilly I am the same as you, guilty as charged, I am too vain to have any fingers removed. I have enough issues with my body as it is and this would push me over the edge..
I really don't see the light yet bloody long dark tunnel.. Perhaps I might bet lucky and it will work, thats why he wants to cut a lot of the flesh out and do a skin graft ouch.... plenty wobbly bits on my tum if he fancies taking it from there.. don't know why he has chose the arm yet ?
The next 5 months are gonna be long, I am an impatient person and hate waiting.. like to get things done with there and then. But I do understand its about the timing.

The other question is.. how does it affect your daily life when your fingers are curled in.. I do a little bit of hairdressing for pin money..can't cut hair with wonky fingers !

Soretoe2

Hi Dotty,
You don't say if it's your dominant hand or the other one.
The severity of how your hand ends up can be very variable and some people can use it almost normally (once you get it going in the morning of course) and others are very disabled by it.
You mentioned your hairdressing. No one can tell you whether you'll be able to do that better even after the op. Mostly with this nasty condition our reactions, strength and dexterity are severely affected.
One elderly frend has a completely curled up hand all the time. Mine can be uncurled a bit and I have adapted to be able to do lots of things but using various hand aids and a bit of ingenuity. Mind you I've never been a swearer but now I can come out with some awful stuff, as I drop things all the time. Also I have had both my thumbs fused, which doesn't help on the flexability side! One a success and one quite frankly a botched job, both by same surgeon.
When you see your surgeon next it may be best to ask him about the likelihood of it returning. It may be that he'll have a good idea, due to knowing your case. He'll probably prevaricate a bit but insist on an answer, after all you are the person living with it.
Do you have anyone else in your family with it or know of someone who had it years ago. The genetic part could mean yours will be similar to theirs and give you an idea what to finally expect you hand to settle at.
It's a difficult one having corrective surgery. My daughter-in-law recently had an operation for Carpal Tunnel. Having suffered for about 5 years with problems.
She now wishes she had left well alone as she has a three year old and a 14 weeks old and can hardly use her hand at all. She's been told she's unlucky and is not able to have more surgery to correct it as it's too damaged inside.
I don't wish to put you off, its just how it is and it's always a good idea to be aware of the problems that this operation can have.
I'm pleased that frogmortonn has also mentioned the same thing, it is not uncommon.
Good luck in what you choose to do, we have probably made it more difficult for you to decide now, sorry.
Let us know how you get on, you could be one of the success stories and be very pleased with it all. Best wishes, Joy

jillyb1

Me again , Dotty , my dupuytrens hand is my right and I'm right handed ! I have adapted using every aid I can find and now manage ok ; but it's easier for me as I'm unable to work and my hubby is my full time carer . Not sure if you'd be able to continue hairdressing but , as has already been mentioned , you can't guarantee that the op will improve your range of movement enough to work either ! It's really a matter of what seems right for you at the time ~ we're all different . Jillyb

suzygirl

I also am right handed and the dupuytrens is in that hand. I drop a lot of things and it inteferes with a lot,but you just have to adapt unfortunately.

I wish you well with your decision and potential surgery.