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Advice please re. RT for Dupuytrens, & the rest
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scumble

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scumble

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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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    spanishbuddha 

    Administrator


    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!

      scumble

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      scumble

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      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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        spanishbuddha 

        Administrator


        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

          scumble

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          scumble

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          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.

            scumble

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            scumble

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

            scumble:
            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. Many thanks.

            It is two years since my last post, owing to the more urgent intervention of the covid pandemic, then cancer (my wife's; fortunately she is recovering). I'd now like to ask another question, if I may. First, maybe a recap is in order. I've already received excellent advice from the forum on most of this. Today's question comes at the end.

            Long ago I moved from the UK to South Korea where doctors have little or no experience in treating Dupuytrens, Ledderhose or Peyronies. Since then I've developed all three (the last, at my age, I'm content to live with). A British surgeon who contributed to your Groningen symposium (and on which basis I sought him out) removed an unusual cord on the intermediate phalange of my ring finger that was causing a 30° contraction, but appears to have omitted a second cord below the first that has since kept the contraction at 20°. The finger remained bent after surgery but it was many months before the swelling reduced sufficiently for additional collagen around the wound to make itself obvious. I have not yet been able to return and discuss this with him. However, he also excised nodules from the palm of the same hand, for which, apparently, he obtained consent on the way to theatre. I don't doubt that he did, but do not remember the conversation. I was therefore surprised to wake up with a second scar in the palm. I am told elsewhere that consent should not be sought from a patient minutes before an operation, minor or otherwise.

            Another UK specialist, Dr. Richard Shaffer, whom I managed briefly to see in 2019, observed that the disease threatened an aggressive course, though of course the outcome was not predictable.

            In Seoul, unable to afford regular journeys to the UK (e.g. Dr. Shaffer's clinic), I obtained radiotherapy for Dupuytrens and Ledderhose nodules (one hand, both feet) from a Korean oncologist after introducing him to the Seegenschmiedt protocol.

            I am the first in South Korea to receive RT for this disease, and it worked. But this year new nodules arose outside the irradiated area on the left foot. The oncologist is surprised, but suggests that further treatment, if I wish for it, can be safely done. He would observe the 2cm zone beyond the target as before (and as recommended by the protocol) but dispense with his additional margin previously applied against 'human error.' This will allow him scope to treat the new disease. Given the little experience in treatment among Korean doctors, CT scans were relied upon to build a simulation and careful calibration was made. Hence his belief that the procedure may be safely repeated.

            I have been in this country a long time, and am prepared to accept that this gentleman knows what he's doing. But naturally I should be interested in, and grateful for, comments by professionals (or indeed anyone) on this site who is kind enough to offer a view.

            Incidentally I previously referred to sensory nerve loss associated with the surgery. I no longer believe that surgery was the direct cause. It looks rather as if the position of my neck maintained during the four hours of surgery exacerbated compression that was already occurring, owing to foraminal narrowing.

            Thanks for reading.

              spanishbuddha 

              Administrator


              spanishbuddha 

              Administrator

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

              Hi scumble

              Nice to hear from you again. It's possible that ProfS might pop by and comment, also he is doing zoom consultations these days and may offer one. In the meantime here's what he has to say in the past on follow up treatment with RT https://www.dupuytren-online.info/Forum_...48247359.html#6 if that is the point you are asking about.

              Best wishes SB

                scumble

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                scumble

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

                spanishbuddha:
                Hi scumble

                Nice to hear from you again. It's possible that ProfS might pop by and comment, also he is doing zoom consultations these days and may offer one. In the meantime here's what he has to say in the past on follow up treatment with RT https://www.dupuytren-online.info/Forum_...48247359.html#6 if that is the point you are asking about.

                Best wishes SB

                That is precisely the point, Spanishbuddha, and many thanks for the link. It's a question of avoiding overlap of the radiotherapy fields, as the Korean oncologist is perfectly aware. If Prof. Seegenschmiedt wished to comment I'd be delighted, but if he were here I think he would be assured that I'm in good hands.

                I'll convey his earlier remarks to the doctor. The new nodule is growing at pace - active fibroblasts - and I think further RT would be in order. There goes another month's wages.

                Thank you for your attention and kind welcome - with all good wishes.

                Edited 08/28/21 16:58

                  Prof.Seegenschmiedt 

                  Prof.Seegenschmiedt 

                  PATCHWORK is PATCHWORK ! ... Mixed Feelings about critical Cocktails

                  scumble:
                  spanishbuddha:
                  Hi scumble

                  Nice to hear from you again. It's possible that ProfS might pop by and comment, also he is doing zoom consultations these days and may offer one. In the meantime here's what he has to say in the past on follow up treatment with RT https://www.dupuytren-online.info/Forum_...48247359.html#6 if that is the point you are asking about.

                  Best wishes SB

                  That is precisely the point, Spanishbuddha, and many thanks for the link. It's a question of avoiding overlap of the radiotherapy fields, as the Korean oncologist is perfectly aware. If Prof. Seegenschmiedt wished to comment I'd be delighted, but if he were here I think he would be assured that I'm in good hands.

                  I'll convey his earlier remarks to the doctor. The new nodule is growing at pace - active fibroblasts - and I think further RT would be in order. There goes another month's wages.

                  Thank you for your attention and kind welcome - with all good wishes.


                  PATCHWORK is PATCHWORK ....

                  PATCHWORK can look nice and may be adequate for clothing but not for MEDICINE .... or RADIATION THERAPY .... or COMBINED EFFORTS treating DUPUYTREN OR LEDDERHOSE DISEASE combined with surgery and radiotherapy or vice versa ! However, why are "PATCHES" sometimes necessary and in certain situations justified ?

                  What are situations in DD & LD when "PATCHES" might become necessary ?


                  (1) RADIATION PORTALS TOO SMALL OR RADIATION DOSE TOO LOW ...


                  .... which results in RELAPSES at the EDGE or OUTSIDE of former RT PORTALS ....

                  What are the lessons to learn :
                  why was the RT portal too small ? Possible answers: eventually DISEASE not apparent at that time ? or LACK OF VISUAL or PALPATORY DISEASE DETECTION due to a possible LACK OF CLINICAL EXPERIENCE ? or LACK of SUFFICIENT COVERAGE of the ANATOMICAL RELEVANT REGION (i.e. full involvement of the palmar and plantar aponeurosis) ??

                  I have some doubts that in "scrumble's history" the DD really started just in ONE FINGER and no other regions, e.g. palm ... ?? This would be an extremely rare start of DD

                  In addition I have some doubts about the appropriate radiotherapy portal coverage of the ANATOMICAL REQUIRED AREA ??

                  ---> NEED TO SEE THE RT PORTAL USED in the 1st round of radiotherapy ; NEED TO READ THE CHOSEN RT PROTOCOL


                  ...
                  (2) TIMING and PRACTICE OF SURGERY INAPPROPRIATE

                  ,,,, which can result in relapse or may trigger DD outside the operated areas, even in previously irradiated zones ...

                  I have some doubts about the correct time of the HAND SURGEON to intervene and try to correct a progressed situation ??
                  Was it clear to begin, that he actually planned an "open fasciectomy" which includes both finger and palm region? or was it planned to perform a noninvasive or m

                  I wonder about the situation TODAY -
                  after combined ( = patched) ACTIVITIES of RT plus SURGERY in the operated area ?? - again PROGRESS or STABILITY ??


                  ---> NEED TO SEE THE HAND FUNCTIONS in various daily activities (e.g. grab an hold a glass, spread and lift fingers )


                  (3) APPROPRIATE DETECTION & PLANNING OF TREATMENT FOR LEDDERHOSE DISEASE

                  I wonder about the situation of BOOTH FEET and their CLINICAL SIGNS and SYMPTOMS ??

                  What has been done regarding DIAGNOSTIC ASSESSMENT ?? --> I would recommend ULTRASOUND or even better MAGNETIC RESONANCE IMAGING according to the protocol of Aaron Wolfson from Miami University ...

                  WE have recently started to do MRI and CT-FUSION to cover the affected areas of the foot sole with appropriate depth and safety margins and thus our RT-PORTALS became different from previous practice ... however this requires EXPERIENCE.


                  (4) PLANNED COMBINATIONS are often meant to be STRENGTHENING the weaker part of both treatment components

                  thus, in some occasions "PLANNED REMOVAL of DD and LD NODULES & CORDS followed by RT to the untouched areas
                  might be an individually viable option, however, well practiced radiation therapy might be still the optimal approach.


                  RESUMEE

                  Unfortunately "SCRUMBLE" has a LANDMARK NAME ... addressing the problem of many DD and LD affected persons.

                  as some (internet based) knowledge, some individual (scientific) readings, a well-known "RT rececipe" ( 5 x 3Gy in 2 RT-series) and a lot of mixed feelings and practices have been mixed together in the past to create a "critical cocktail".

                  NOONE has seriously taken the LEAD to GUIDE "scrumble" through the jungle of information leaving to a piled-up "hill of doubts" regarding still useful and rational ways to obtain reasonable DIAGNOSTIC and THERAPEUTIC OPTIONS.

                  If "scrumble" wishes to plan the treatment for both FEET in a REASONABLE and RATIONAL MANNER I am willing to help
                  e.g. by VIDEO CONSULTATION (contact via E.mail: prof.seegenschmiedt@gmail.com

                  Edited 08/29/21 13:03

                  Datei-Anhänge
                  Appropriate Coverage of Hand Palm_MHS(c)2021.jpg Appropriate Coverage of Hand Palm_MHS(c)2021.jpg (4x)

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                  LEDDEEHOSE-TREATMENT DOCUMENTATION & PLANNING - Example_MHS(c)2021.jpg LEDDEEHOSE-TREATMENT DOCUMENTATION & PLANNING - Example_MHS(c)2021.jpg (2x)

                  Mime-Type: image/jpeg, 111 kB

                    scumble

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                    scumble

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

                    Prof.Seegenschmiedt:
                    scumble:
                    spanishbuddha:
                    Hi scumble

                    Nice to hear from you again. It's possible that ProfS might pop by and comment, also he is doing zoom consultations these days and may offer one. In the meantime here's what he has to say in the past on follow up treatment with RT https://www.dupuytren-online.info/Forum_...48247359.html#6 if that is the point you are asking about.

                    Best wishes SB

                    That is precisely the point, Spanishbuddha, and many thanks for the link. It's a question of avoiding overlap of the radiotherapy fields, as the Korean oncologist is perfectly aware. If Prof. Seegenschmiedt wished to comment I'd be delighted, but if he were here I think he would be assured that I'm in good hands.

                    I'll convey his earlier remarks to the doctor. The new nodule is growing at pace - active fibroblasts - and I think further RT would be in order. There goes another month's wages.

                    Thank you for your attention and kind welcome - with all good wishes.


                    PATCHWORK is PATCHWORK ....

                    PATCHWORK can look nice and may be adequate for clothing but not for MEDICINE .... or RADIATION THERAPY .... or COMBINED EFFORTS treating DUPUYTREN OR LEDDERHOSE DISEASE combined with surgery and radiotherapy or vice versa ! However, why are "PATCHES" sometimes necessary and in certain situations justified ?

                    What are situations in DD & LD when "PATCHES" might become necessary ?


                    (1) RADIATION PORTALS TOO SMALL OR RADIATION DOSE TOO LOW ...


                    .... which results in RELAPSES at the EDGE or OUTSIDE of former RT PORTALS ....

                    What are the lessons to learn :
                    why was the RT portal too small ? Possible answers: eventually DISEASE not apparent at that time ? or LACK OF VISUAL or PALPATORY DISEASE DETECTION due to a possible LACK OF CLINICAL EXPERIENCE ? or LACK of SUFFICIENT COVERAGE of the ANATOMICAL RELEVANT REGION (i.e. full involvement of the palmar and plantar aponeurosis) ??

                    I have some doubts that in "scrumble's history" the DD really started just in ONE FINGER and no other regions, e.g. palm ... ?? This would be an extremely rare start of DD

                    In addition I have some doubts about the appropriate radiotherapy portal coverage of the ANATOMICAL REQUIRED AREA ??

                    ---> NEED TO SEE THE RT PORTAL USED in the 1st round of radiotherapy ; NEED TO READ THE CHOSEN RT PROTOCOL


                    ...
                    (2) TIMING and PRACTICE OF SURGERY INAPPROPRIATE

                    ,,,, which can result in relapse or may trigger DD outside the operated areas, even in previously irradiated zones ...

                    I have some doubts about the correct time of the HAND SURGEON to intervene and try to correct a progressed situation ??
                    Was it clear to begin, that he actually planned an "open fasciectomy" which includes both finger and palm region? or was it planned to perform a noninvasive or m

                    I wonder about the situation TODAY -
                    after combined ( = patched) ACTIVITIES of RT plus SURGERY in the operated area ?? - again PROGRESS or STABILITY ??


                    ---> NEED TO SEE THE HAND FUNCTIONS in various daily activities (e.g. grab an hold a glass, spread and lift fingers )


                    (3) APPROPRIATE DETECTION & PLANNING OF TREATMENT FOR LEDDERHOSE DISEASE

                    I wonder about the situation of BOOTH FEET and their CLINICAL SIGNS and SYMPTOMS ??

                    What has been done regarding DIAGNOSTIC ASSESSMENT ?? --> I would recommend ULTRASOUND or even better MAGNETIC RESONANCE IMAGING according to the protocol of Aaron Wolfson from Miami University ...

                    WE have recently started to do MRI and CT-FUSION to cover the affected areas of the foot sole with appropriate depth and safety margins and thus our RT-PORTALS became different from previous practice ... however this requires EXPERIENCE.


                    (4) PLANNED COMBINATIONS are often meant to be STRENGTHENING the weaker part of both treatment components

                    thus, in some occasions "PLANNED REMOVAL of DD and LD NODULES & CORDS followed by RT to the untouched areas
                    might be an individually viable option, however, well practiced radiation therapy might be still the optimal approach.


                    RESUMEE

                    Unfortunately "SCRUMBLE" has a LANDMARK NAME ... addressing the problem of many DD and LD affected persons.

                    as some (internet based) knowledge, some individual (scientific) readings, a well-known "RT rececipe" ( 5 x 3Gy in 2 RT-series) and a lot of mixed feelings and practices have been mixed together in the past to create a "critical cocktail".

                    NOONE has seriously taken the LEAD to GUIDE "scrumble" through the jungle of information leaving to a piled-up "hill of doubts" regarding still useful and rational ways to obtain reasonable DIAGNOSTIC and THERAPEUTIC OPTIONS.

                    If "scrumble" wishes to plan the treatment for both FEET in a REASONABLE

                    SCUMBLE wishes to respond, but something wrong with this page and can't post. Will try again tomorrow. Apologies.

                    Edited 08/30/21 16:37

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