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Advice please re. RT for Dupuytrens, & the rest
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02/17/18 16:29
scumble 
02/17/18 16:29
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

Stefan_K.:
If you like Paris you can get your finger straightened at Lariboisière hospital like me in 15 minutes in one appointment for around 100 Euros. I recommend wearing a splint glove at night after that. The doctor may not mention that to you.

Stef

[55, Dupuytren diagnosis 2006, RH contracture and PNF/NA 2014, radiotherapy RH 2015, LH 2017 & 2018, night splint glove RH since 2015]
A nice idea. Haven't been to Paris since I was a student. I will make sure about the splint, which I note you have recommended previously to several others. Many thanks.

02/20/18 13:37
wach 

Administrator

02/20/18 13:37
wach 

Administrator

Control groups in studies of radiotherapy

Prof. Werker is an excellent and highly recognized surgeon and researcher of Dupuytren's, probably one of the best worldwide that we currently have. But he may not be fully familiar with the issue of having a control group for trials in radiotherapy.

In optimum trials patients are randomly assigned to control and to treated groups. Additionally it is made sure that both groups have the same characteristics with regard to potentially influencing factors, like age, gender, family history, smoking habits etc.

For trials that run a few months or maybe a year, this can be achieved and patients who are assigned to the control group are assured that they will be treated after the end of the trial. That's normally not a big problem because Dupuytren's is progressing slowly in most cases.

The first issue is that some patients will refuse being assigned to the control group requesting immediate treatment. This affects random selection and those patients have to be eliminated from the trial completely. But nevertheless, the control group might thus increasingly consist of patients who have less problems with Dupuytren's and maybe overall a less aggressive form of Dupuytren's.

Another issue is that we don't yet fully understand Dupuytren's and don't know which characteristics are important and which not. Those mentioned above are probaly important but there may be others that we are not aware of and that might skew the comparison of the treated and the untreated group.

The third problem with control groups is the length of the trial, and this is a very difficult one specifically when studying the effect of radiotherapy. For surgical trials the observation period may be 1/2 year or one year, maybe two years. For such relativly short periods of time it may be acceptable to patients to a end up in an untreated control group. But when researching the effect of radiotherapy on Dupuytren's you want much longer observation periods, at least five, better 10 year or longer. For such long periods of time you just can't assign patients randomly to a control group. It would not be acceptable to patients and it would be unethical.So what do you do? In his study Prof Seegenschmiedt somehow circumvented this problem by assigning patients into the 21 Gy and 30 Gy treatment groups randomly and using as untreated control group those patients who refused, for whatever reason, radiotherapy. Obviously this is not a random assignment and Prof. Werker is right that this is not the ideal control group but considering the required long term observation I honestly believe this is the best you can do. Of course you still want to make sure that the three goups have matching characteristics, the our best knowlede, and Prof. Seegenschmiedt did that. Details of this study have been published in a book https://link.springer.com/chapter/10.100...-642-22697-7_44

Wolfgang

scumble:
... Dr. Werker at the University of Groningen Hospital maintains that, for Dupuytrens, the Seegenschmiedt research is not convincing since 'it lacks proper control groups.' ..


Edited 02/20/18 13:49

02/21/18 14:37
scumble 
02/21/18 14:37
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

Many thanks indeed Dr. Wach for taking the trouble to set out these obviously important points, which I should hope are of interest to others also. Thank you also for your encomium for Prof. Werker, since I am likely to consult him on my trip to Europe this year.

08/31/18 13:26
scumble 
08/31/18 13:26
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

scumble:
Many thanks indeed Dr. Wach for taking the trouble to set out these obviously important points, which I should hope are of interest to others also. Thank you also for your encomium for Prof. Werker, since I am likely to consult him on my trip to Europe this year.

After several months I now return to the forum with a personal update on progress, and an urgent question (please see paragraph 4 below). Radiotherapy to the Dupuytren's nodules in my left palm at the metaphalangeal head, and to Ledderhose nodules in my right foot, was completed in April this year, here in Seoul, by an oncologist who had studied the 'German protocol.' It may have had some effect on the Dupuytrens; the condition stabilized, perhaps even with some regression. These nodules had appeared only a few months previously. Those on the sole of my right foot had been developing for nearer a year, or possibly more, and I can only say that their size and condition remains the same. Unfortunately, there now seem to be further nodules emerging on the left foot, so further radiotherapy may be needed.

In Korea, where doctors have little experience in treating this disease, the oncologist finds it necessary to rely on CT scans, with which he constructs a computer simulation. There is no use in pointing out that such a procedure has no place in European clinics, and I have to pay most of the costs of the scans along with the RT itself.

In July my schedule finally allowed me to travel to the UK, where a consultation had been arranged with Dr. David Warwick (www.handsurgery.co.uk). Regarding the 'unusual' 45° PIP cord on my left ring finger (this began three years ago, so was not included in RT), Dr. Warwick finds it unsuitable for either PNF or Xiapex, and that surgery is 'the better option.' He also told me: '...if the cord has been down at 45° and more for two long then, even if the Dupuytren's is treated, sometimes the finger will not straighten fully. This is due to a joint contracture' (or 'frozen joint,' as he also refers to it). I was unable to accept his offer of surgery the following week, partly because of the expense, and will have to return at a later time.

Many patients and specialists (on this forum and elsewhere) advise waiting as long as possible before resorting to surgery, since the disease progresses differently in each case and intervention may never be necessary. Dr. Warwick, however, did not advise delay. But nor would he speculate as to how long it might be before the joint became 'frozen.' I cannot return to the UK for treatment for many more months. Therefore my question to the forum is whether other Dupuytren's sufferers can suggest how much time I might have before this 'freezing' of the finger joint might occur. I will be grateful for any further input.

09/01/18 09:38
spanishbuddha 

Administrator

09/01/18 09:38
spanishbuddha 

Administrator

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

The pinkie PIP is the most difficult to treat successfully and have a fully straight and functioning finger after NA, Xiaflex or Surgery. There are several important factors, including the location of cord or cords in relation to other structures in the finger and is often the reason one treatment is preferred over another, and the success or outcome. You don’t say what is unusual about your unusual case? Another factor is the surgeons skill, and here Mr Warwick is highly experienced, respected and skilled. Another factor is how long the finger has been bent and fixed in position, this affects the tendons, the joint capsule and other supporting structures. There is no one answer for you, the sooner the better, the damage may already be done, how long has your finger been bent? If you return to Mr Warwick my concern would be how you get the post operative wound and physio care which often makes all the difference in how successful hand surgery is. This physio care often needs to continue for months, and although you can carry out exercises yourself, continual checks and updates with modifications to the physio recovery may be needed. Of course everything may go smoothly, good healing, no stiffness, but I wouldn’t plan on that basis without expert help being available.

Edited 09/01/18 09:40

09/01/18 12:30
scumble 
09/01/18 12:30
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

spanishbuddha:
The pinkie PIP is the most difficult to treat successfully and have a fully straight and functioning finger after NA, Xiaflex or Surgery. There are several important factors, including the location of cord or cords in relation to other structures in the finger and is often the reason one treatment is preferred over another, and the success or outcome. You don’t say what is unusual about your unusual case? Another factor is the surgeons skill, and here Mr Warwick is highly experienced, respected and skilled. Another factor is how long the finger has been bent and fixed in position, this affects the tendons, the joint capsule and other supporting structures. There is no one answer for you, the sooner the better, the damage may already be done, how long has your finger been bent? If you return to Mr Warwick my concern would be how you get the post operative wound and physio care which often makes all the difference in how successful hand surgery is. This physio care often needs to continue for months, and although you can carry out exercises yourself, continual checks and updates with modifications to the physio recovery may be needed. Of course everything may go smoothly, good healing, no stiffness, but I wouldn’t plan on that basis without expert help being available.

Dear Spanishbuddha: Thanks for your response. Dr. Warwick finds the cord unusual, I think, because it has formed along the intermediate phalange, upwards from the PIP joint, rather than between the metaphalangeal head and the proximal phalange. It's the ring (3rd) finger (not the pinkie), and I will attach two pictures, not very clear I'm afraid but you might see what I mean (just in the central section of the finger, disregarding the separate nodules in the palm).

Dr. Warwick says: 'This cord is too slim for needle fasciotomy and the target too narrow for Xiapex because it is so close to the joint capsule... (so) surgery would be the better option.'

The pictures were taken in February this year. The cord appeared two years previously and there has been little further contraction since the picture was taken. Yes it is difficult, but not impossible, to arrange to be in the UK for surgery as well as essential follow-up. You advise 'the sooner the better,' and I appreciate your frankness. But I am confused, because elsewhere general advice has been to delay intervention as long as possible, to ensure that the contraction has progressed as far as it's going to, and that one should not rush into surgery. That's why I decided not to join Dr. Warwick's operating list straight away. His warning about the 'frozen joint' seemed at odds with the advice I've heard so many times about not doing anything hasty. But I note your remarks as to his reputation.

I do of course accept that there is no one answer, but would be grateful for any further comment, considering this.

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09/01/18 13:23
spanishbuddha 

Administrator

09/01/18 13:23
spanishbuddha 

Administrator

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

Thanks for sharing the photos. I think the advice to delay refers to delaying surgery when there are other options available such as NA or Xiaflex. I don’t really think there is a conflict, NA or Xiaflex is advised when there is a palpable accessible cord, usually quite early in contracture, say anything after 5-10 degrees. In your case I think I would ask Mr Warwick (in the UK surgeons are addressed as Mr not Dr) whether an open fasciotomy (not fasciectomy) is possible, that’s like an NA but an incision is made. But disclaimer IANAD. The finger joint contracture, hence the supporting tissues do not seem too far advanced to have suffered irreversible changes, but I would listen to Mr Warwick in this respect. I stand by sooner the better, but full surgery or fasciectomy, (would it include the palm), complicates the decision on when and the surgery can be a challenge for recovery and the risk of recurrence. I would seek RT afterwards if there are signs of further progression! You have in Mr Warwick one of the things we advise, a highly experienced surgeon in treating DD. The other thing is you could always get a second opinion?

09/06/18 02:41
scumble 
09/06/18 02:41
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

spanishbuddha:
Thanks for sharing the photos. I think the advice to delay refers to delaying surgery when there are other options available such as NA or Xiaflex. I don’t really think there is a conflict, NA or Xiaflex is advised when there is a palpable accessible cord, usually quite early in contracture, say anything after 5-10 degrees. In your case I think I would ask Mr Warwick (in the UK surgeons are addressed as Mr not Dr) whether an open fasciotomy (not fasciectomy) is possible, that’s like an NA but an incision is made. But disclaimer IANAD. The finger joint contracture, hence the supporting tissues do not seem too far advanced to have suffered irreversible changes, but I would listen to Mr Warwick in this respect. I stand by sooner the better, but full surgery or fasciectomy, (would it include the palm), complicates the decision on when and the surgery can be a challenge for recovery and the risk of recurrence. I would seek RT afterwards if there are signs of further progression! You have in Mr Warwick one of the things we advise, a highly experienced surgeon in treating DD. The other thing is you could always get a second opinion?

Thank you very much Spanishbuddha for your thoughts. I have been in touch again with David Warwick , who suggests that a contraction of 45° can be corrected even after some time (mine reached 45° six or seven months ago) but once it reaches 60° it tends to be less 'forgiving.' In my particular case he finds that only fasciectomy is a real option, as I report above. And of course he is a specialist in dermofasciectomy - that is, using skin grafts -which is what he proposes in this instance. As I think you have said yourself (IANAD either) surgery should generally be a recourse only where function is significantly impaired. In any case your approbation of Mr. Warwick is certainly helpful.

Just in case it is difficult to return to the UK, I was wondering which, if any, hand surgeons in Germany also practice dermofasciectomy (it is rather easier for me to travel there), although Mr. Warwick seems prodigiously well-published and prominent in this particular field. I could perhaps find out by trying to contact a number of them but I wonder if there is someone here who already knows.

Edited 09/06/18 02:55

09/06/18 10:01
spanishbuddha 

Administrator

09/06/18 10:01
spanishbuddha 

Administrator

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

I would be even more concerned about the post-operative care needed for a dermofasciectomy, and think you really need to take that into consideration. We have a page listing German doctors performing NA which might be a starting point for your search for another Dr., see https://www.dupuytren-online.de/nadelfas...e_adressen.html

04/27/19 09:36
scumble 
04/27/19 09:36
scumble 
Re: Advice please re. RT for Dupuytrens, & the rest

spanishbuddha:
I would be even more concerned about the post-operative care needed for a dermofasciectomy, and think you really need to take that into consideration. We have a page listing German doctors performing NA which might be a starting point for your search for another Dr., see https://www.dupuytren-online.de/nadelfas...e_adressen.html

Spanishbuddha, I don't believe I ever thanked you for that. I'm afraid this is my first post in eight months. In the end my only option was surgery in the UK, which took place in January - 15 weeks ago, actually. I might come to regret it, and would like to explain why later. However, unless my finger is forced straight, which takes a few minutes, it remains 'locked' in the same attitude it had when contracted, though of course the cord causing contracture has been removed. The physiotherapist overseeing follow-up provided a splint to wear at night, and exercise instructions, all of which I use continuously. In February the surgeon advised me to dispense with the splint, whereas his physiotherapist told me to persist with it for several more months. Since then, none of my questions have been answered, and I have no guidance.

Anyway, I stretch the finger straight before putting on the splint at night. Soon after taking this off, it defaults to its previous crooked position. The PIP joint (where the cord began) is still stiff and swollen. There now appears to be a proliferation of Dupuytren's on the dorsal side of the joint. It was visible at the time of surgery, but I did not then know the disease can grow in that position. That it was Dupuytren's was first suggested by the physiotherapist a month afterwards. The surgeon has never remarked on it. It is now more painful than anything related to the surgery itself. I wonder if it could be affecting recovery. Again, I have no advice on this. There are other complications arising from surgery and I am presently pursuing the clinic for answers. As I have said, I may relate more details on this forum in due course.

My previous posts testify that the disease is following a fairly aggressive course. I am now in the middle of a third series of radiotherapy, this time for Ledderhose on the left foot (a year ago it was the right foot and left hand). But for the moment, I wish to ask whether anyone else with a Duputren's cord removed from a finger (contracted at 45°) has found four months after surgery that the finger would not straighten unaided. Perhaps I am unlucky, or there's something important that I'm not doing. I am using hot and cold water alternately, straightening, bending (it still will not bend as far as the palm) as often as I can, but maybe it just isn't going to work in my case.

Perhaps someone could advise me. Thanks again for the last time!

Edited 04/27/19 09:37

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