Hi All,

I am a 33yr old male who has had Depyutren's on my left hand for at least 15yrs. It started with the ring and little fingers and seems to have remained only in these areas for now. When I initially got the condition at a young age I had not idea what it was or how it worked thus went straight into surgery on the advise of the specialist. Since then I have done 2 surgery's on my hand with succes in the ring finger but the depyutren's has continued in the little finger. I am currently looking at the possibility of a 3rd surgery which would include amputation but thought it would be wise to find out more before making a decision.

Recently I have been visiting a new specialist who was very open about the different options available unlike my first specialist. This one also advised me to do my own research and get informed on the condition before deciding how and if I want to proceed.
Currently the state of my hand is such that the top 2 joints of the little finger are at 90 degrees and the third joini in the hand is also bending, the little finger is now facing the palm and almost touching it (see photos). I feel I have lost siginifcant use of my hand and have reduced grip with many things challenging though not impossible yet. The specialist advised that the only options he sees that could benefit me at the moment is either collegenese which he says is unlikely to be successful but could be tried. The other is surgery to clean out the depytruen's and remove the little finger at the 2nd joint including skin graft. My initial thoughts are that this could give me more use of my hand however it is hard to guage how successful the surgery and healing process would be. I could also choose to leave it as it is but with reduced hand use and possible deterioration.

It doesnt seem like I have too many options but my initial thought is given my age and youth it might be worth trying something to maximise the use of my hand while I still can rather than doing nothing. If I was much older I would probably leave things as they are. Surgery seems to be the only option with a reasonable possibility of success from the information I have been able to find though I have read that with amputations there are risks including phantom limb pain.

If anyone has had experience with my kind of deformity or surgery including amputation please let me know your thoughts and results if any.

Thank you all for providing a great space where we can help each other.

Dom

Hi Dom

I have a pinkie amputated, not from DD, and it was done before my teens. Also the entire finger and MCP joint was removed so I do not have a stub but a sculpted hand. The ring finger has a 'soft' contracture from scar tissue. At the time I had to do months of physio to recover function, but from the accident that caused the injury. Having lived with this most of my life I now have good use of the hand, excellent dexterity and aesthetics, e.g. I play tennis and piano. But, the grip is weak, the hand naturally claws, and I think amputation is not without problems, such as the phantom pain your refer to, infection, swelling, and in your case a remaining stub that may interfere. A colleague of mine had an amputation from DD quite recently and there was pain and swelling for 6-9months and his unsightly MCP stub gets in the way of many everyday things.

So amputation is not as easy an option as may appear. There will be a possibly a difficult recovery period from either amputation or surgery to straighten again. Someone else on here has had his finger straightened and the joints fused so that contracture is not possible. I can't say whether that is better than living with a contracted finger; it may be easier to manage the skin from fungi or ulceration. I would certainly consider one more try to restore some straightness and function if possible, another surgery, or Xiaflex. But really only your surgeon can help. Perhaps seek two or three opinions from the best you can find before deciding what to do.

Best wishes
SB