kbear:

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Hi all,

I am new to this forum. My husband is 56 and was just diagnosed with Dupuytrens (and osteoarthritis)--it is early yet. His mother has very bad osteoarthritis and what up until now has been baffling deformity to her hands and feet. I should mention her father was born in Sweden. Her hands (including thumbs) are worse than many pictures I have seen online and her feet . . . terrible. It is bilateral in both hands and feet.

Docs usually think its RA and then when that comes back negative they shrug their shoulders and throw pain meds at her. One doctor recommended a surgery in which they would break all the bones in her feet. They generally say there is nothing they can do but have never given it a name.

I wonder is it common for docs to miss this disease for so long? Granted she lived in the wilds of Oregon for a while with poor access to care and never had insurance (thank God for Medicare).

Also, does anyone have experience with treatments in very advanced cases? I can send pics; just don't have any now. Her feet definitely are beginning to lose circulation. I would rather she not have an amputation.

Thoughts?

Sorry to hear about your condition and poor diagnosis. Fortunately for me my knuckle pads, which were very painful, went away on there own. I have had several NA procedures every 6m for almost 3yrs to keep my finger usable. After my last NA I started wearing a splint (fixx glove) at night and fortunately it's kept my finger straight.

My advice to you and to everyone is to educate yourself, and talk to multiple DRS before doing anything.

Best of luck to you!
Ed

Hi Luciferette,

If the physio is bursting your wound I would think that the physio is to heavy. Could you possibly ask for a more moderate and considerate physio? Physio is good to keep the hand mobile but it is most important that the hand heals.

You are right, NA is for cutting cords only. It won't help for nodules. Having said this, I thought I have a nodule at my PIP joint that causes the contracture and did not consider myself a candidate for NA. I then learned that in my case there were actually 2 thin cords deeper under the skin and the doctor was able to break them using NA.

Radiotherapy: What your hand surgeon says is another way of saying that he considers RT useless. Not uncommon for surgeons but not true.

Wolfgang

Luciferette:

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... Also a Z section of the wound hasn't healed yet...partly due to it bursting from the swelling when I do my physio :( ...

Re: NA - I've read that it can only be used on cords in the palms, and isn't suitable for nodules actually at the PIP joints? Is this correct?

Radiotherapy - I've looked into this but there is nowhere in this region (East Yorkshire) that offers it on the NHS. My hand surgeon said he'd rather wait anyway, and simply operate once the finger starts to contract.
It's hard, isn't it?! Any advice re: post-surgery etc. gratefully received.

Many thanks, Wolfgang and SB! I'm doing the exercises regularly but with caution :) tbh the swelling at the joints is making it impossible to make a fist yet anyway but like you say - hang in there!
The contracture now stands at about 30 degrees which, although not perfect, is a lot better than it was prior to surgery. It's the "feel" of the skin I'm more concerned about. The gentlest touch feels most unpleasant, and I'm really hoping this improves as the nerve damage mends. I know they had to do a lot of work inside my poor finger; diseased tissue had grown around the ligaments etc so surgeon had to "fillet me to the bone", like a fish!
Rest assured, I take your advice on board, and I'll keep looking into the options available. There's no doubt: this pain in the *rse diathesis isn't going away in a hurry, it's just a case of dealing with it as it progresses. Thanks again for all your support :) x