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Advice please re. RT for Dupuytrens, & the rest
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09/29/19 12:03
scumble 
09/29/19 12:03
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

spanishbuddha:
Yes yours is an interesting story. If I summarise correctly (?) you had DD in the palm but no MCP contracture, DD in the finger with contracture that was too diffuse for NA or collagenase. Your treatment plan was RT in the palm after getting (just) the finger straight, but for some reason the surgeon, recommended by us and with a good reputation, worked on both the finger and palm. Possibly he felt there was DD leading from the palm into the finger? The unplanned palm surgery appears to have caused nerve damage, and the planned finger surgery was only partially successful whereby it can be straightened but usually not by itself, healing is slow and a flare reaction has occurred. It’s not clear if a skin graft that was discussed was done, can you share a photo? You continue hand physio but the ongoing dorsal flare is now a concern.

RT preceded surgery. I'll attempt a summary.

First to appear was DD on the intermediate phalange - a narrow diagonal cord between PIP & DIP. After a year of contraction, steroid was injected into to the palm below, prompting a V- shaped flare of nodules. But no MCP contracture, as you say. I am in a distant country with no DD specialists and little experience in treatment. After the palm flare, I began research in earnest and came to this forum. I arranged to consult the UK surgeon when next able to travel there, but that was many months away. So I approached a Korean oncologist and asked him to study the protocol and administer RT to the palm. We decided it was by then too late for the finger. He carried out the treatment perfectly (and has since done the same to LD on both feet with positive results).

Whether RT to the palm was necessary I'm no longer sure. I rushed because Seegenschmeidt's research indicated that delay reduces the likelihood of success. (Much later I met Dr. Shaffer in the UK who does not accept this). Meanwhile the Koreans - lacking specialist experience - require CT scans to construct a simulation which makes it all the more expensive. In any case, when I later reached the UK and met the surgeon he declared that the palmar nodules were not worth worrying about. He proposed surgery to the cord because - as you say - he found it too slim for NA/Xiapex. I had not expected this, and had to arrange surgery a further six months ahead when I was next able to return from Korea. He evidently had not examined the notes or photos I'd sent in the preceding months. Of course diagnosis is not possible by e-mail. But I was not encouraged to find him telling me what I already knew and had in fact already explained to him. I learned only that surgery was advisable and what it would cost.

I proceeded anyway on the basis of his reputation as a surgeon (rather than my experience of him as a doctor) and his papers on dermofasciectomy and its advantage in reducing frequency of recurrence of DD. For the finger, in the initial consultation, a graft was suggested but in the event the skin was stretched. No skin was taken from anywhere else. By the day of surgery a swelling on the dorsal side of the knuckle had appeared, but I paid it little attention, thinking it might be dermatitis. This grew in the weeks afterwards and on inquiry the surgeon's physiotherapist told me it could be more Dupuytren's or a Garrod's pad. It now seems to have stabilized and is just an additional nuisance. The surgeon says he does not recall it, but if it is indeed DD then this seems odd also.

However, I awoke after four hours to find, having done the finger job, he'd made a zig-zag scar in the palm and removed the plaque of DD beneath. No graft. He accepts there was no mention of the palmar nodule in the consent form but considers its removal reasonable. 'The consent form ... encompassed the nodule in the palm since it was also in the same ray as (the) ring finger and the risks-benefits remain the same.' In other words he thought he may as well go ahead while he was about it.

After what he'd said in consultation, I never thought he would go into the palm. Having read that surgery after RT is ill-advised, I wouldn't have consented to it. As it turned out, he assumed - not paying attention again - that I'd had RT to the finger as well. When I expressed concern he pointed out how well it was healing regardless. I dare say he was right but I don't feel consent was properly sought. He disagrees.

The finger is now at 15 degrees from the PIP and I think that's as straight as it will ever be by itself. Before surgery it was about 50 degrees. I'm not sure that the dorsal flare is affecting this.

As for nerve damage following the palmar intervention, the surgeon has asked me to send the data from the nerve conduction study. He still holds that 'carpal tunnel syndrome is the most likely diagnosis.' But the onset of CTS would be gradual after surgery, whereas this was immediate. Others, as I say, believe that the palmar wound is the direct cause and there's no CTS.

Edited 09/29/19 15:26

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Dorsal view 5 months post-op.jpg Dorsal view 5 months post-op.jpg (5x)

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09/29/19 17:00
spanishbuddha 

Administrator

09/29/19 17:00
spanishbuddha 

Administrator

Re: Advice please re. RT for Dupuytrens, & the rest

Thanks for sharing. To a layman it seems that: the incisions have healed very well, even the palm which had been subject to RT, and you have to think the surgeon did a good job closing; the small opening in the palm gives no indication why or that there would have been, during surgery difficulty with nerves, but maybe there was a negative effect from the RT after all (pure speculation); there are signs of redness on the side of the finger prior to surgery, although this could just be photo lighting, but the surgeon went in from the other side to the redness; the surgeon went in mainly from the side of the finger, which is something I have never seen before but may be an indication of why NA or collagenase was not suitable; the dorsal view looks less like garrods pads and more like swelling or nodules of some type along the same side of the finger where the pre-op redness was.

Doesn't help at all just looking to learn lessons for all. Yet compared to yours we see many post surgical photos that look quite horrrendous, but months later the patient is pleased with the outcome!

09/30/19 15:37
scumble 
09/30/19 15:37
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

spanishbuddha:
Thanks for sharing. To a layman it seems that: the incisions have healed very well, even the palm which had been subject to RT, and you have to think the surgeon did a good job closing; the small opening in the palm gives no indication why or that there would have been, during surgery difficulty with nerves, but maybe there was a negative effect from the RT after all (pure speculation); there are signs of redness on the side of the finger prior to surgery, although this could just be photo lighting, but the surgeon went in from the other side to the redness; the surgeon went in mainly from the side of the finger, which is something I have never seen before but may be an indication of why NA or collagenase was not suitable; the dorsal view looks less like garrods pads and more like swelling or nodules of some type along the same side of the finger where the pre-op redness was.

Doesn't help at all just looking to learn lessons for all. Yet compared to yours we see many post surgical photos that look quite horrrendous, but months later the patient is pleased with the outcome!

Spanishbuddha, you have previously (and rightly) advised me to concentrate on recovery, and keep that separate from my ideas about the surgeon's possible failings. As you point out, he seems to be an excellent surgeon - please see additional photo taken a month post-op. If my complaints seem churlish or ungrateful, maybe they are.

Far worse things are happening to people all the time. Yet I'm confused. Surgeons and doctors among my family and friends are pressing me to issue a formal complaint. Since the moment surgery was finished I've had three numb fingers. I was told that surgery would be to the finger only. But I woke up with the palmar wound and the sensory loss in the fingers, which seems permanent. The surgeon insists that - technically - I consented to all this. But it seems obvious I did not. Everything I have mentioned (and more) appears to suggest poor practice, regardless of his skill as a surgeon. But perhaps I am naive. Perhaps this is unfair. I wish I could make up my mind.

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09/30/19 18:22
spanishbuddha 

Administrator

09/30/19 18:22
spanishbuddha 

Administrator

Re: Advice please re. RT for Dupuytrens, & the rest

Hi scumble

I make no judgement or criticism of either you or the surgeon, my last post was not meant to convey such a meaning, so apologies if it did. I was looking for lessons learned by thinking aloud from a neutral position. The only thing I conclude so far is the external appearance immediately after surgery is no real indication of the outcome.

If I was in your place I would be disappointed with the outcome so far, the degree and number of numb fingers, the slow and partial finger recovery to date, and would indeed be looking at and concentrating on methods and prospects of improving either of those.

If I was to make a complaint, I would first decide what I wanted out of the complaint, what change, or resolution, or .. ? I can’t guide you with that. I have my own ideas but am not in your place and have not suffered the disappointment you must feel.

Best wishes SB

10/01/19 16:03
scumble 
10/01/19 16:03
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

spanishbuddha:
Hi scumble

I make no judgement or criticism of either you or the surgeon, my last post was not meant to convey such a meaning, so apologies if it did. I was looking for lessons learned by thinking aloud from a neutral position. The only thing I conclude so far is the external appearance immediately after surgery is no real indication of the outcome.

If I was in your place I would be disappointed with the outcome so far, the degree and number of numb fingers, the slow and partial finger recovery to date, and would indeed be looking at and concentrating on methods and prospects of improving either of those.

If I was to make a complaint, I would first decide what I wanted out of the complaint, what change, or resolution, or .. ? I can’t guide you with that. I have my own ideas but am not in your place and have not suffered the disappointment you must feel.

Best wishes SB

Of course. Sorry for any misconstruction. My complaint - if I ever make one - is not motivated by the disappointing outcome for me, as much as by the surgeon's attitude. My principles are offended because I would not dream of behaving in the same manner. But I realize that to disparage him here is not be a good thing to do and nor is it helpful. The General Medical Council are no use with this. So I'll reflect on whether there are actual and reasonable grounds for a complaint, but firstly what I'd hope to achieve by it. Meanwhile I'll continue with my intermittent research and reports. The RT-nerve loss hypothesis is interesting - I'll pursue it!

Many thanks.

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