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Scared newbie!
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11/18/2016 15:28
Luciferette 
11/18/2016 15:28
Luciferette 
Scared newbie!

Hi, I've just been diagnosed with aggressive type 1 Dupuytrens after years of misdiagnosis - GP was convinced it was rheumatoid arthritis, and I even paid to see a private consultant 3 years ago who briefly examined my already deformed right hand, shrugged, and muttered "These things happen..." £200 I'll never get back - and now, of course, the disease has progressed to the point where surgery is the only option according to my (excellent) new consultant (NHS).
I am female, 41 now and it started in my early thirties. My grandfather had a similarly aggressive form, and also had surgery several times (his index finger pointed the wrong way!), although I didn't find this out until after my diagnosis.
I have few problems in my palms, but the little finger on my right hand is absolutely knackered. Severe PIP contracture (over 90 degrees now) with HUGE lumps above and below the joint. It aches a lot and cracks alarmingly! There is now a lump under the same joint on my left hand which is growing by the week. Severe Garrod's pads on most of my other PIP joints which, contrary to popular belief, are extremely painful (especially in cold weather).
I run the family ironmongery business and am a writer the rest of the time - scheduled for surgery in the new year which is bad timing as my agent will no doubt be suggesting a rewrite of my debut novel around January - so having working hands is essential for my job(s). I think I will need a skin graft, going by what the surgeon said, or at least extensive work done. He has also warned me of the likelihood of recurrence and worsening condition due to the nature of my case.
Sorry for the long post, but this has rather floored me after so many years of pain and struggling with my hands at work. At least now I know what it is - but can anyone give me an idea of recovery time and prognosis after this kind of surgery? I realise I have no other option but to go for it, but I can't have much time off work and am frankly - like a wimp - scared of the pain afterwards! Can anybody on here advise and/or reassure me? :)

11/18/2016 16:21
spanishbuddha 

Administrator

11/18/2016 16:21
spanishbuddha 

Administrator

Re: Scared newbie!e

Sorry to hear your news Luciferette. The PIP joint on the pinkie can be the hardest of all joints to treat for contracture. You need an experienced hand surgeon, one who has enough experience to rule out attempting NA or Xiaflex as a first pass. You could ask the BDS privately via email if they know about your surgeon or can advise others. http://dupuytrens-society.org.uk.
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I would think your best plan is get the finger(s) as straight as can be, and look into RT as a means of slowing down or halting further progression. Recovery from surgery can be difficult for some, also easy for some, and here your age should be on your side.

I'm not sure how best to protect your hands given your vocation. Trauma does appear to be implicated, but there are degrees, and ongoing use of the hands is to be encouraged, but with sensible precautions. Don't use you hands directly as a tool if possible, instead use an appropriate tool.

I think that by acting now to get the hand straight, and with RT to follow up you will be on the way to recovery, but you will likely be managing this condition for the rest of your life.

Explore this site, all the information you need should be here, and let us know if you have further questions. There are other public support groups on Facebook, the Dupuytren's Contracture group and the Dupuytren's Disease Support, also Dupuytren's Advocate for RT. They are to some extent unmoderated, so read, research, think, before following others advice, my own too.

Best wishes SB

11/18/2016 18:02
Luciferette 
11/18/2016 18:02
Luciferette 
Re: Scared newbie!

Thanks for your swift reply! I've been having a scout around the forum and there's tonnes of info on here - it's great (meant in an appreciative way) to read about other people's experiences with this bizarre condition.
The consultant I'm seeing is a surgeon specialising in trauma and orthopaedics. He seems honest and obviously knows his stuff, unlike the arrogant, disinterested guy I actually paid to see me! He even brought in two med students to examine me and take notes so they could learn about the condition, which was both disconcerting and reassuring :)
Radiotherapy was mentioned, and I'm considering it for my left hand which, as I say, is already progressing in EXACTLY the same way as my right, even down to the lumps (tumours? Nodules?) in the same PIP joint. Xiaflex is, according to my surgeon, only available privately in the UK, and I really don't have the means to pay for it. It certainly wouldn't help my severe contracture but maybe (in future) might help the less severely affected joints.
Just a couple of questions - how come I have little evidence of Duputrens in my palms? Under the little fingers they're slightly puckered, but no great cords or lumps. It's really my fingers that are taking the brunt of it. Also, the consultant said these are fibroblastomas (I think) - is it a form of benign cancer, as I understand cells multiplying madly for no reason to be?
Finally - I've worked an 8 hour day on my feet for 20 years, yet in the past year I've found my feet to be very painful by home time. The consultant nodded and kind of screwed his mouth up a bit before saying I might be developing it in my feet as well...no sign of lumps, though, so is it likely?
Thanks again, Spanish Buddha, your advice is very much appreciated. Enjoy your weekend :)

11/18/2016 20:41
spanishbuddha 

Administrator

11/18/2016 20:41
spanishbuddha 

Administrator

Re: Scared newbie!

Dupuytren's nodules are a form of fibroma, a benign growth in the fascia. They usually develop through collagen growth and change into a different rope like structure called a cord, and it is this that usually contracts. People develop differently, so for example I have no nodules in the fingers, just in the palm. There are theories about trauma and strain but it's really not clear why it develops in different ways, some develop contracture, most do not. With painful garrods pads your fingers do seem to be under siege, yet I also have occasionally painful garrods pads, contradicting slightly what I told you about my own hands.

The Xiapex situation in the U.K. is complicated, see http://dupuytrens-society.org.uk/treatme...m-histolyticum/ and we are awaiting an update from NICE. It dissolves or cleaves collagen structures in the cords, so is used or licensed to treat contracture and not nodule reduction. RT is available privately or on the NHS although support for that is patchy.

The relationship with your consultant surgeon is important, but so too is their specific experience in treating DD using the latest knowledge. I would ask them about this as it does not sound, despite your positive and glowing view, if they have that specific knowledge and experience of the hand and DD? No need to respond to this, it's your call of course. An important part of recovery is post OP support, wound care, scar management, physio, and for some splinting, ask about all that before surgery.

Many people do experience a flare after surgery, so if you are considering RT for the other hand, take a consultation too for post surgery RT, once skin, vascular and nerve healing is complete, and if there any signs of new nodules.

Edit to add, DD is associated with other fibrous related conditions, and that includes frozen shoulder, Peyronies for men, and an equivalent form in the feet called Ledderhose or Plantar Fibromatosis. Ask a podiatrist to feel along your plantar fasciiitis for thickening or lumps whilst the foot is relaxed. I would not worry about this too much, unless it's confirmed and starts causing you problems.

Best wishes SB

Edited 11/18/16 22:45

11/19/2016 10:42
Luciferette 
11/19/2016 10:42
Luciferette 
Re: Scared newbie!

Thanks again - a good explanation of the process!
I have another, pre-surgery, appointment with the consultant in January, so I shall be sure to grill him on the issues you've raised, particularly post-op care and physio. I think I was just so relieved at finally having a diagnosis after such a long road that I kinda fell at his feet haha.
Will let you know how I get on (though I'm not sure of the options of "choosing" a surgeon on the NHS - I think maybe you get who you're given?)! Thanks again.

11/19/2016 11:34
spanishbuddha 

Administrator

11/19/2016 11:34
spanishbuddha 

Administrator

Re: Scared newbie!

Luciferette:
(though I'm not sure of the options of "choosing" a surgeon on the NHS - I think maybe you get who you're given?)
See http://www.nhs.uk/chq/Pages/902.aspx?Cat...bCategoryID=162

Plenty of time for reading between now and your appointment. I hope you feel better about this after some reflection. For the majority having DD is just a bit of a nuisance that needs to be looked after. I play piano and sport, so it's a worry but compared to other conditions we can get get as we age maybe it's not so bad. I keep saying that to myself! Do come back and let us know how things turn out, especially if you have advice pertinent to fellow patients.

11/22/2016 20:06
glennymo 
11/22/2016 20:06
glennymo 
Re: Scared newbie!

Newbie..... I had surgery Nov. 11th on my right hand. The surgeon told me it took 45 minutes. The removed tissue was from the bottom of the palm to the big nuckle on little and ring finger and middle of the palm on the bird finger. I had zero pain, was in a cast for a week, have my stitches out next Monday and have full range both ways already. I have not seen my hand this flat and flexible in 30 years. I will be doing the left hand week after next. I can't wait. So in 11 days I am pretty well ready to go.
If you want the doc's name just respond. He is in Augusta Ga. I highly recommend him.

Edited 11/22/16 22:09

11/22/2016 20:14
glennymo 
11/22/2016 20:14
glennymo 
Re: Scared newbie!

and let me add, after reading many posts here I almost backed out. I had also gotten an opinion 2 years ago and the doc then told me 6 months on each hand. My current surgeon laughed and said 2 weeks. The way he did it was entirely different than the way the other guy explained it.

11/22/2016 21:11
spanishbuddha 

Administrator

11/22/2016 21:11
spanishbuddha 

Administrator

Re: Scared newbie!

Good to hear your story and outcome with surgery glennymo. There are sadly often more sad news stories than happier ones. The skill and experience of the surgeon seems to be one factor that can be controlled by selection of the patient. Do you have any before and after photos you can share? Also your post-op recovery routine, wound care, phyiso etc. How is the recovery going?

11/22/2016 21:40
glennymo 
11/22/2016 21:40
glennymo 
Re: Scared newbie!

I did not take photos. I will when I do my left hand. My rehab was 13 Percocet and a week in a cast. If straight up is noon, my fingers were at about 10 30 to 11. I could not grip a football. Today I can make a fist, and my fingers go back past parallel with my palm. I have 3 incisions. The cord was from the finger to the base of the palm, one incision slightly into the finger. He didn't use a zig zag, he went in directly above the cord and followed it. He says he has never had one return. I know him personally and he is primarily a plastic surgeon but has a fellowship in hands. he is 70 years old. I am 60. The first doc i saw was an ortho doc and his description was way more complicated. This one didn't do x rays. General anesthesia.

Edited 11/22/16 23:43

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Luciferette   bCategoryID=162   disconcerting   surgeon   surgery   fingers   condition   considering   contradicting   fibroblastomas   particularly   contracture   disinterested   experience   Radiotherapy   consultant   m-histolyticum   dupuytrens-society   apprehensive   recovery