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Advice please re. RT for Dupuytrens, & the rest
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04/27/19 13:54
spanishbuddha 

Administrator

04/27/19 13:54
spanishbuddha 

Administrator

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

Hi scumble, thanks for the update on your hand. I would at first be encouraged that you can get the finger straight, albeit with the other hand. I would want to understand what is stopping it from straightening under normal circumstances. Presumably you are doing lots of physio with tendon glide exercises, so it could be difficulties with swelling, joint stiffness, scarring, tendon sheath, and so on, maybe the dorsal nodules too. Have you been informed of what physical problems are slowing progress? Your physiotherapy should be targeted at resolving these. Have you discussed the use of a dynamic splint during the day? Slightly more than 3 months after surgery can be early days for some more complex cases, as indicated by the ongoing swelling you mention, so persevere. But I am a bit more concerned at the underlying implication of a breakdown in communication and trust with your surgeon or clinic, and think seeking a second opinion on the way ahead, answering and resolving your questions would be helpful.

05/04/19 06:42
scumble 
05/04/19 06:42
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

spanishbuddha:
Hi scumble, thanks for the update on your hand. I would at first be encouraged that you can get the finger straight, albeit with the other hand. I would want to understand what is stopping it from straightening under normal circumstances. Presumably you are doing lots of physio with tendon glide exercises, so it could be difficulties with swelling, joint stiffness, scarring, tendon sheath, and so on, maybe the dorsal nodules too. Have you been informed of what physical problems are slowing progress? Your physiotherapy should be targeted at resolving these. Have you discussed the use of a dynamic splint during the day? Slightly more than 3 months after surgery can be early days for some more complex cases, as indicated by the ongoing swelling you mention, so persevere. But I am a bit more concerned at the underlying implication of a breakdown in communication and trust with your surgeon or clinic, and think seeking a second opinion on the way ahead, answering and resolving your questions would be helpful.
Thank you Spanishbuddha for this. Yes, I'm keeping up tendon glide exercises. No, there has been no help regarding slow progress. I can visit the UK/Europe only infrequently so seeking a second opinion is not easy. Surgery was to my left hand for the excision of a DD cord in the middle phalange of my ring finger. It took place in January and followed RT carried out to the palm (not the finger) nine months previously. But I did also drop in on Dr. Shaffer, who seemed surprised that the finger was none too straight.

1. There has been no sensation in the fingertips of my left hand since surgery. The surgeon has twice claimed this was caused by latent carpal tunnel syndrome aggravated by surgery. But a nerve conduction test in March (here in Korea) showed no CPS, and indicates that sensory loss was caused by his intervention. He will not now comment.

2. The surgeon performed two procedures: a fasciectomy to my finger and a second to the palm. Written consent was obtained for the first, just before surgery. I have no memory of agreeing to the second. It is this second intervention that would have caused numbness in the fingers. The surgeon tells me I gave oral consent on my way to theatre. I cannot refute this, but only recall our initial consultation in which he'd declared that the nodules in the palm were not worth worrying about. According to the GMC, obtaining consent, oral or written, on the point of going to theatre is poor practice.

3. The physiotherapist assigned to follow-up advised me strongly to persevere with the night splint. At precisely the same time, the surgeon himself told me to dispense with it. I have had no guidance from either of them since. I do have a dynamic splint but it is not effective enough to hold my finger straight.

4. The Dupuytren's nodule on the dorsal side of the PIP was visible when I went to surgery. I did not then know what it was, unaware that the disease can occur in that position. It was not remarked upon in the surgeon's pre-op. examination. It was the physiotherapist who first told me it could be Dups. in an e-mail a month afterwards, by which time it had proliferated painfully. I have since asked whether it may be affecting recovery of function. The level of function is unchanged since before surgery. Of course, it is all too easy to blame doctors when things don't work out. The trouble is that there is no response to my reports or queries.

The surgeon's last message to me - having received my letter re. the above - was 'I trust you are satisfied with progress.' Dismissive, in other words. I then wrote to the hospital matron who telephoned me and said it was unfortunate that I am in a distant country. I do not see the relevance. Nor, clearly, had she read my letter. I know that clinically there is nothing to be done. The issue is that my questions are not addressed, and the excuse given that I am 'so far away.' I wrote yet again, and eventually received the offer of another telephone conversation with the same person. I'm not getting through to these people.

The surgeon was recommended by Dr. Wach among others and I have no doubt that he's a good surgeon. But not, I would say, a good doctor. No Korean doctor would dream of behaving in this way. It is their job to answer questions. And so far I have sent only feedback solicited by the surgeon. I am only now on the point of making a formal complaint.

By the way I see Prof. Seegenschmiedt has made some recent contributions to the forum. Perhaps he'd be interested to know that I seem to be the first patient to receive RT for DD & LD in South Korea, having introduced the protocol to a Korean oncologist who made a study of Mr. Seegenschmeidt's papers. I have permission to mention his name - Lim Dong-Hoon - and he is ready to answer questions about the procedure followed. Dupuytren's is hardly known here which is why there is little experience in treatment.

Edited 05/04/19 08:44

05/04/19 09:18
spanishbuddha 

Administrator

05/04/19 09:18
spanishbuddha 

Administrator

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

Hi scumble.

Sorry to hear the further details of your story. If you review the forum or patients’ posts on the FB groups you will find others who had a poor experience and outcome with surgery. In your case it seems you followed the advice in finding an experienced surgeon with recommendations, but that has turned out not to be enough. I will still say that 4 months on can be early days for some cases, and healing may still be taking place as you have mentioned swelling, nerve damage and a flare on the dorsal side. I can’t say if your distance from the hospital and physio is a factor but it’s less than ideal.

I think you need to separate the ongoing complaint you have with the surgeon and clinic, with your requirement to get the best advice to assist with the recovery that may be possible. In your position I would want to understand what is impacting recovery and address those issues. Nerves take a long time to heal, although sometimes they may never recover, swelling from inflammation should subside, the dorsal nodules might affect the ability to make a fist, maybe straightening too. You have not mentioned scarring (internal or external) or pain on movement. But, all these and other aspects need to be addressed in person by a doctor or physiotherapist who can examine you in person. Is there no possibility of getting some local help with this? A dr who performs carpal tunnel or trigger finger surgery for example, and has familiarity with the healing outcomes for those.

Best wishes

05/04/19 10:27
scumble 
05/04/19 10:27
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

spanishbuddha:
Hi scumble.

Sorry to hear the further details of your story. If you review the forum or patients’ posts on the FB groups you will find others who had a poor experience and outcome with surgery. In your case it seems you followed the advice in finding an experienced surgeon with recommendations, but that has turned out not to be enough. I will still say that 4 months on can be early days for some cases, and healing may still be taking place as you have mentioned swelling, nerve damage and a flare on the dorsal side. I can’t say if your distance from the hospital and physio is a factor but it’s less than ideal.

I think you need to separate the ongoing complaint you have with the surgeon and clinic, with your requirement to get the best advice to assist with the recovery that may be possible. In your position I would want to understand what is impacting recovery and address those issues. Nerves take a long time to heal, although sometimes they may never recover, swelling from inflammation should subside, the dorsal nodules might affect the ability to make a fist, maybe straightening too. You have not mentioned scarring (internal or external) or pain on movement. But, all these and other aspects need to be addressed in person by a doctor or physiotherapist who can examine you in person. Is there no possibility of getting some local help with this? A dr who performs carpal tunnel or trigger finger surgery for example, and has familiarity with the healing outcomes for those.

Best wishes
Hello again. Of course you are right about separating these matters. I have to take due responsibility for recovery. The surgery wounds healed rapidly and there has never been pain, other than from the new dorsal nodules which are sensitive. There is only the stiffness which takes some minutes to loosen up. After which, it will more or less straighten (when stretched with the other hand) but still won't bend to the palm. Yes, I suppose that could be the dorsal nodules. And yes, I agree of course it would be sensible to see a hand surgeon here or someone with the expertise to help with ongoing recovery. I've been distracted for some weeks with the latest course of RT to my left foot, but will arrange to see such a person locally asap. (Traditional Oriental medicine can sometimes help also, incidentally). Meanwhile, thanks as ever for your time, and I'll report back presently.

Edited 05/04/19 10:29

08/23/19 06:05
scumble 
08/23/19 06:05
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

scumble:
spanishbuddha:
Hi scumble.

Sorry to hear the further details of your story. If you review the forum or patients’ posts on the FB groups you will find others who had a poor experience and outcome with surgery. In your case it seems you followed the advice in finding an experienced surgeon with recommendations, but that has turned out not to be enough. I will still say that 4 months on can be early days for some cases, and healing may still be taking place as you have mentioned swelling, nerve damage and a flare on the dorsal side. I can’t say if your distance from the hospital and physio is a factor but it’s less than ideal.

I think you need to separate the ongoing complaint you have with the surgeon and clinic, with your requirement to get the best advice to assist with the recovery that may be possible. In your position I would want to understand what is impacting recovery and address those issues. Nerves take a long time to heal, although sometimes they may never recover, swelling from inflammation should subside, the dorsal nodules might affect the ability to make a fist, maybe straightening too. You have not mentioned scarring (internal or external) or pain on movement. But, all these and other aspects need to be addressed in person by a doctor or physiotherapist who can examine you in person. Is there no possibility of getting some local help with this? A dr who performs carpal tunnel or trigger finger surgery for example, and has familiarity with the healing outcomes for those.

Best wishes
Hello again. Of course you are right about separating these matters. I have to take due responsibility for recovery. The surgery wounds healed rapidly and there has never been pain, other than from the new dorsal nodules which are sensitive. There is only the stiffness which takes some minutes to loosen up. After which, it will more or less straighten (when stretched with the other hand) but still won't bend to the palm. Yes, I suppose that could be the dorsal nodules. And yes, I agree of course it would be sensible to see a hand surgeon here or someone with the expertise to help with ongoing recovery. I've been distracted for some weeks with the latest course of RT to my left foot, but will arrange to see such a person locally asap. (Traditional Oriental medicine can sometimes help also, incidentally). Meanwhile, thanks as ever for your time, and I'll report back presently.
Since last posting I've completed my third session of RT, this time to the left foot. Last year it was the right foot and left hand, as related previously. I can report that the Ledderhose nodule on my left foot promptly reduced in size and became less painful. It had been there almost a year. Last year's RT treatments were, I am sure, helpful but the results not so immediate and obvious. I repeat that all this was done by an oncologist here in Seoul, and I am apparently the first patient to have received the treatment in Korea. Dupuytrens does occasionally present itself here but as a result of injury rather than genetic predisposition. So there has been strong interest in my case and further research.

My difficulties continue regarding the English surgeon - a Dupuytrens specialist - who performed a fascieictomy to my left hand when I visited the UK seven months ago. The sensory loss in my fingers persists and he will not answer questions. I am on the point reluctantly of submitting a formal complaint. I appreciate that this may not be of direct concern to others, and won't help my condition. But my correspondence with him has raised questions about, for example, the efficacy of splints. Later I may post more details arising from this.

Meanwhile I have a further question to the forum. The skin is always dry secondary to the radiotherapy, at least for several months. In 15% of cases the effect is permanent. I may be in that portion, but am not certain. However, a callus formed on the left foot soon after RT, and is painful. The same thing happened after RT to my right foot last time. On both occasions it developed a little away from the radiation target, in the metatarsal area. My question, if anyone happens to know the answer, is whether dry skin after RT tends to occur around the target area or only specifically within it.

Edited 08/23/19 16:43

08/23/19 09:26
spanishbuddha 

Administrator

08/23/19 09:26
spanishbuddha 

Administrator

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

Hi again scumble, I’m sure you know the benefits of splinting after surgery are a matter of dispute. The Dupuytrens conference and book had a topic on this as a ‘controversy’ on which two different sides expressed an opinion. You can find these talks, for and against, on YT. https://youtu.be/2-Ad4vp1EOA Having said that most patients posting on this topic in our forum are in favour and report benefits. We have a page about this on the website https://www.dupuytren-online.info/dupuyt...-splinting.html.

I will wait to see what others say about your question on dry skin. I have had both hands treated and do get dry skin, but only in the irradiated area, and only apparent in the less humid months of winter, a topical cream takes care of it.

Edited 08/23/19 09:27

09/27/19 02:57
scumble 
09/27/19 02:57
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

spanishbuddha:
Hi again scumble, I’m sure you know the benefits of splinting after surgery are a matter of dispute. The Dupuytrens conference and book had a topic on this as a ‘controversy’ on which two different sides expressed an opinion. You can find these talks, for and against, on YT. https://youtu.be/2-Ad4vp1EOA Having said that most patients posting on this topic in our forum are in favour and report benefits. We have a page about this on the website https://www.dupuytren-online.info/dupuyt...-splinting.html.

I will wait to see what others say about your question on dry skin. I have had both hands treated and do get dry skin, but only in the irradiated area, and only apparent in the less humid months of winter, a topical cream takes care of it.

Spanishbuddha, thank you for your response to my previous. I apologise for taking so long about it. Whether or not secondary to RT, a callus on the sole of the foot can be quite painful. But as to its causes, there are so many factors in play : for example problems with the back and the knees, one's habits of posture and locomotion that are hard to change at 50+, and as we know one thing leads to another. There's probably no single cause.

Meanwhile the hand surgeon who performed the fasciectomy in the UK early this year claims that, in signing a consent form that warns merely of 'numbness' following surgery, I can have no complaints in respect of sensory loss in three of my fingers that has been in effect from the moment I regained consciousness. He insists that nerve fibres were undamaged, and the only cause can be 'latent' carpal tunnel syndrome aggravated by the operation. Here in South Korea, a consultant neurologist (following nerve conduction studies), a hand surgeon with experience of Dupuytren's, an orthopedic surgeon and, back in the UK, a retired surgeon of long acquaintance, all dismiss this thesis without hesitation. The Korean hand surgeon further explains that damage or trauma to nerves cannot always be avoided even when great care is taken, since the tissues and fibres are so densely combined. I may or may not eventually recover the nerve function.

In due course I could perhaps relate the entire story more concisely, from the beginning, in a new post, once my disputations with the surgeon are somehow concluded.

But there is something else: a lesion or swelling on the dorsal side of the finger from which the Dupuytrens' cord was excised. The knuckle, I mean, on the opposite side to the surgical scar. This was already visible before surgery. I have never known exactly what it might be. The operating surgeon says that he did not notice it, curiously. But he and his physiotherapist later suggested that it may be more Dupuytren's, or else a Garrod's Pad (which commonly occur as part of the Dupuytrens diathesis). If it is Dupuytren's then I don't understand why he didn't remark on it at the time. Not that it seems to be affecting recovery of function in the finger, but it has always been sore. The Korean surgeon, however, says that Dupuytren's is never seen on the dorsal side of the finger. Now, I'm getting on a bit and accept that my joints are going to tend to swell up for all manner of reasons and I'll have to get on with it like everyone else. This distension on the knuckle could be some ordinary build-up of tissue in reaction to the two years of gradual contraction of the PIP joint before the operation. But I should be interested to know if anyone can confirm whether or not the disease can in fact occur on the dorsal side of the finger.

Kind regards.

Edited 09/27/19 03:04

09/27/19 08:33
spanishbuddha 

Administrator

09/27/19 08:33
spanishbuddha 

Administrator

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

scumble:
But I should be interested to know if anyone can confirm whether or not the disease can in fact occur on the dorsal side of the finger.

Kind regards.
This is covered on the BDS website in the section on Garrods pads, check the research paper referenced, and the section on dupuytren dorsal nodules http://dupuytrens-society.org.uk/informa...ted-conditions/

Edit to add link to our own page on this https://www.dupuytren-online.info/knuckle_pads.html

Edited 09/27/19 08:51

09/28/19 03:46
scumble 
09/28/19 03:46
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

spanishbuddha:
scumble:
But I should be interested to know if anyone can confirm whether or not the disease can in fact occur on the dorsal side of the finger.

Kind regards.
This is covered on the BDS website in the section on Garrods pads, check the research paper referenced, and the section on dupuytren dorsal nodules http://dupuytrens-society.org.uk/informa...ted-conditions/

Edit to add link to our own page on this https://www.dupuytren-online.info/knuckle_pads.html

Right, thanks. I missed this. Interesting. Yes, I'd say it is Dupuytren's on the knuckle. It is the ring finger and not the index of course, but the disease has proliferated unusually, as I realized in my early postings last year. The surgeon later declared this himself, as if I didn't already know. Now that the swelling from surgery has lessened, I can see remaining nodules around the middle phalange of the finger, reaching to the dorsal side. The larger bump on the knuckle was like Dupuytren's in its development; tender and pliable at first, then harder and less painful...so.

I hope my lengthy reports are of some interest to others, as some compensation for the kind help you provide.

09/28/19 10:05
spanishbuddha 

Administrator

09/28/19 10:05
spanishbuddha 

Administrator

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

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.

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