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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

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