The right words to ask a prospective hand surgeon |
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03/23/2021 12:16
BobL
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03/23/2021 12:16
BobL
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The right words to ask a prospective hand surgeon
I am actively looking for a doctor to help me with my Dupuytren's contracture. I have called several doctor's offices up, some nearby and others farther away. While I know what I want, I am having trouble figuring out what questions to ask, or even if it is inappropriate to ask such questions.
What I don't want is to go through the cost/trouble of meeting with a hand surgeon who secretly prefers open surgery (though I can see why they might) but says they can - at least in some circumstances - release a contracture with a needle. I suspect that there are such doctors around and I just want to give resolving my contracture with a needle every reasonable chance.
Here's what I think I want to ask:
It is my understanding that the use of a needle, rather than a scalpel, for fasciotomy substantially reduces risk of complications, reduces costs, and improves recovery time, though possibly also increasing the potential for recurrence of the contracture.
About how many Dupuytren’s cases does Doctor X see each year? About what percentage of those Dupuytren’s cases does Doctor X successfully treat using a needle versus a scalpel?
Is that unreasonable to ask? Do any of you have any suggestions for improvement?
I understand that it is quite possible that I might go to the world's expert in NA only to have him tell me that there is something about my specific situation that eliminates NA as an option. I just don't want to find a hand surgeon who says that they can do NA but really doesn't want to.
Thanks,
BobL
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03/23/2021 16:36
spanishbuddha Administrator
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03/23/2021 16:36
spanishbuddha Administrator
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Re: The right words to ask a prospective hand surgeon
Without commenting directly on your wordage, I think I would ask or say directly that you are looking for a doctor/surgeon who treats Dupuytren Contracture as one of their specialities, and who uses Needle Aponeurotomy/Percutaneous Needle Fasciotomy, or Xiaflex, as the first line of treatment when possible for mild to moderate contracture, and state you prefer NA/PNF if clinically possible. This may of course lead to a discussion about treatment choices or options. Drop the mention of Xiaflex if you prefer, or refer instead to minimal non-invasive surgery.
If you get past that hurdle, you can ask more about training, experience, cases, possibly examples or publications or evidence. This doesn't have to be a hard nosed request for data but more of an 'interested discussion' as the potential patient.
If you don't get past that first hurdle you could ask for recommendations.
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03/24/2021 01:38
Prof.Seegenschmiedt
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03/24/2021 01:38
Prof.Seegenschmiedt
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Re: The right words to ask a prospective hand surgeon
BobL: I am actively looking for a doctor to help me with my Dupuytren's contracture. I have called several doctor's offices up, some nearby and others farther away. While I know what I want, I am having trouble figuring out what questions to ask, or even if it is inappropriate to ask such questions. .......
Thanks,
BobL
Good Day for You, BobL
In case your fingers have not yet shown any contracture ( e.g. maximal contracture 10 degree) the use of radiotherapy is still another good option to treat; thus, also an experienced radiation oncologist or therapist may provide a solution for you ...
And if only ONE FINGER has a significant contracture (above 45 degree) , but the other fingers NO CONTRACTURE the solution might be a COMBINED APPROACH, namely minimal invasive RELEASE of the finger plus prophylactic radiotherapy for this finger plus whole hand palm with onl ONE RT SERIES.
So, overall, do not forget to consider RADIOTHERAPY as a treatment option; and if you like you may ask me via E-mail and eventually receive a special medical video consultation with full disease assessment of all your four extremities and broad discussion of the available treatment options from me :prof.seegenschmiedt@gmail.com
Wish you all the best with your (unknown) disease condition and right choices and finally success, Prof. Dr. med. M. Heinrich Seegenschmiedt
Edited 03/24/21 03:50
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03/24/2021 22:29
BobL
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03/24/2021 22:29
BobL
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Re: The right words to ask a prospective hand surgeon
Thank you, spanishbuddah and Prof. Seegenchmiedt for your thoughts and suggestions.
spanishbuddah: I suspect that you are quite familiar with the U.S. Healthcare system. If so, you certainly understand how difficult it is to get into any substantive "conversation" without going all the way to the point of making an appointment and meeting with the doctor in person. That's why I feel like I'll need to be somewhat prescriptive with my questions. (I am going to ask a receptionist, or a scheduler, or maybe an assistant, and then they are going to have to go and talk with the doctor and get back to me.) I've already started asking questions along this vein and the first two offices that I called just never got back to me.
Prof. Seegenchmiedt: Thank you, very much, for your thoughts. I have sent you an email and would welcome the opportunity to talk with you.
Regards,
BobL
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03/29/2021 14:33
BobL
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03/29/2021 14:33
BobL
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Re: The right words to ask a prospective hand surgeon
I just realized a slight ambiguity in my proposed wording:
It is my understanding that the use of a needle, rather than a scalpel, for fasciotomy substantially reduces risk of complications, reduces costs, and improves recovery time, though possibly also increasing the potential for recurrence of the contracture.
About how many Dupuytren’s cases does Doctor X see each year? About what percentage of those Dupuytren’s cases does Doctor X successfully treat using a needle versus a scalpel?
Here's the problem: I am not particularly interested in the XIAFLEX treatments (because of their cost and my impression of the success rate of that approach as opposed to NA/PNF. But XIAFLEX is most certainly marketed as "minimally invasive" and could also be considered a way to treat a Dupuytren contracture "with a needle". Not quite what I am looking for.
That's the kind of thing that I was hoping someone on this forum might point out.
Anyway, I guess that I'll need to refine my wording to specifically say NA/PNF.
BobL
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04/14/2021 06:25
Maddie
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04/14/2021 06:25
Maddie
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Re: The right words to ask a prospective hand surgeon
Bob, where are you located? I have found recs from other patients to be the best source of referals for NA. I
've been doing the same search myself and agree with you that it is difficult. In particular, I've had little success getting any info from schedulers. You may need to make an in person appt wiith one doctor and then, if they don't do NA themselves, see if they have colleagues who do.
Edited 04/14/21 09:25
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04/14/2021 16:55
Prof.Seegenschmiedt
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04/14/2021 16:55
Prof.Seegenschmiedt
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Re: The right words to ask a prospective hand surgeon
Dear BobL
spanishbuddha made a very good point: this world is NOT CHEAP !... and any advice which might be cheap is probably deceiving you or others - CHEAP ADVERTISING governs many aspects of our life and unfortunatey even MEDICINE !
You have to throw your HEART, SOUL and BODY into someone's ARMS. THOUGHTS and BRAIN to get the right approach to yourself and your specific problem. Your FUTURE TREATMENT does not only require the APPROPRIATE OPTIMAL TECHNIQUE (which may be even performed by an anonymous machine" but even more so on AN INDIVUAL WELL TRAINED & EXPERIENCED PHYSICIAN as a RELITABLE PERSONALITY WHOM YOU CAN TRUST .... livelong, as your two hands and eventuall your feet are to precious to be thrown under a cheap knife, a cheap injection or undefined X-rays.
And beyond the search of an appropriate WORDING and receipt of good COUNSELLING an optimal medicine also requires a GOOD BLESSING for the practicing doctor and the patient - a gift which cannot be bought in this WORLD
My current conclusion from this THREAD for you:
Hopefully you will find the best way to approach your aleady complicated pathway burdened by doubts and hesitation. Maybe you will now read my advice "TO TREAT or NOT TO TREAT - THAT IS THE QUESTION" in the Practice Guidebook
Yours sincerely. Prof. Dr. med. M. Heinrich Seegenschmiedt
Prof.Seegenschmiedt:
BobL: I am actively looking for a doctor to help me with my Dupuytren's contracture. I have called several doctor's offices up, some nearby and others farther away. While I know what I want, I am having trouble figuring out what questions to ask, or even if it is inappropriate to ask such questions. .......
Thanks,
BobL
Good Day for You, BobL
In case your fingers have not yet shown any contracture ( e.g. maximal contracture 10 degree) the use of radiotherapy is still another good option to treat; thus, also an experienced radiation oncologist or therapist may provide a solution for you ...
And if only ONE FINGER has a significant contracture (above 45 degree) , but the other fingers NO CONTRACTURE the solution might be a COMBINED APPROACH, namely minimal invasive RELEASE of the finger plus prophylactic radiotherapy for this finger plus whole hand palm with onl ONE RT SERIES.
So, overall, do not forget to consider RADIOTHERAPY as a treatment option; and if you like you may ask me via E-mail and eventually receive a special medical video consultation with full disease assessment of all your four extremities and broad discussion of the available treatment options from me :prof.seegenschmiedt@gmail.com
Wish you all the best with your (unknown) disease condition and right choices and finally success, Prof. Dr. med. M. Heinrich Seegenschmiedt
With gratitude for all affected patients & medical colleagues who help to advance patient care ...
Edited 04/14/21 21:38
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04/14/2021 22:10
BobL
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04/14/2021 22:10
BobL
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Re: The right words to ask a prospective hand surgeon
Maddie: Bob, where are you located? I have found recs from other patients to be the best source of referals for NA. I
've been doing the same search myself and agree with you that it is difficult. In particular, I've had little success getting any info from schedulers. You may need to make an in person appt wiith one doctor and then, if they don't do NA themselves, see if they have colleagues who do.
Hi Maddie, I am in northeast TN. I've done quite a bit of searching now but have been unable to get any actual recommendations for any hand surgeons nearby (specific to DD). Most recently, I actually spoke with a nearby practice of hand PTs and they pretty much said that there isn't anyone in our region who does NA/PNF. I found doctors up in the DC area (about six hours away) that looked promising and I also found one doctor in the Raleigh area. There is also one practice in Asheville, NC who might do NA/PNF. All of the practices that I talked with seemed a little less than confident in their ability to do NA/PNF (and were certainly not forthcoming when asked how many DD cases they treat each year with NA/PNF).
Finally, yesterday, I decided to expand my search area. From these International Dupuytren Society forums, I found a couple of very-positive recommendations of Doctors Pess and Atik at Central Jersey Hand Surgery. Visiting their website was like a breath of fresh air: I felt like I had finally found someone who truly specializes in DD and in NA/PNF procedures. Their website provides several videos (a little graphic maybe, but I liked seeing them) and one of Dr. Pess presenting (presumably) to other hand surgeons on the merits of the NA/PNF approach. (It made VERY good sense to me.) It is a long drive to NJ for me but I would much rather drive a long ways to get someone who is truly expert at what he does. The initial consultation can be done from here in TN via video (Telemedicine) and I plan to take that step as soon as I can get it arranged.
Thanks,
BobL
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04/14/2021 22:29
Maddie
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04/14/2021 22:29
Maddie
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Re: The right words to ask a prospective hand surgeon
I live in central VA but am on a trip to Atlanta right now. I did a consult with Dr. Michael Gottschalk at Emory yesterday. He seemed to have a lot of experience with NA and seemed to know what he was talking about, so I decided to take a chance on him. So I have an NA with him scheduled for my left ring finger tomorrow. I'll let you know how it goes, and I'll also ask him if he would like to be added to the NA doc list on this site. (Assuming he does not screw up my hand, lol!)
I have also had treatment with Dr. Pess and he is definitely one of the leaders in NA in this country, so I don't think you could go wrong there. Given the fairly simple procedure I need to have done this time, I decided I did not want to make the trip to NJ again if I could avoid it. But if I had a contraction at a very difficult site I would certainly go to Dr Pess.
Edited 04/15/21 01:33
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04/14/2021 22:29
BobL
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04/14/2021 22:29
BobL
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Re: The right words to ask a prospective hand surgeon
Prof.Seegenschmiedt: Dear BobL
spanishbuddha made a very good point: this world is NOT CHEAP !... and any advice which might be cheap is probably deceiving you or others - CHEAP ADVERTISING governs many aspects of our life and unfortunatey even MEDICINE !
You have to throw your HEART, SOUL and BODY into someone's ARMS. THOUGHTS and BRAIN to get the right approach to yourself and your specific problem. Your FUTURE TREATMENT does not only require the APPROPRIATE OPTIMAL TECHNIQUE (which may be even performed by an anonymous machine" but even more so on AN INDIVUAL WELL TRAINED & EXPERIENCED PHYSICIAN as a RELITABLE PERSONALITY WHOM YOU CAN TRUST .... livelong, as your two hands and eventuall your feet are to precious to be thrown under a cheap knife, a cheap injection or undefined X-rays.
And beyond the search of an appropriate WORDING and receipt of good COUNSELLING an optimal medicine also requires a GOOD BLESSING for the practicing doctor and the patient - a gift which cannot be bought in this WORLD
My current conclusion from this THREAD for you:
Hopefully you will find the best way to approach your aleady complicated pathway burdened by doubts and hesitation. Maybe you will now read my advice "TO TREAT or NOT TO TREAT - THAT IS THE QUESTION" in the Practice Guidebook
Yours sincerely. Prof. Dr. med. M. Heinrich Seegenschmiedt
Prof.Seegenschmiedt:
BobL: I am actively looking for a doctor to help me with my Dupuytren's contracture. I have called several doctor's offices up, some nearby and others farther away. While I know what I want, I am having trouble figuring out what questions to ask, or even if it is inappropriate to ask such questions. .......
Thanks,
BobL
Good Day for You, BobL
In case your fingers have not yet shown any contracture ( e.g. maximal contracture 10 degree) the use of radiotherapy is still another good option to treat; thus, also an experienced radiation oncologist or therapist may provide a solution for you ...
And if only ONE FINGER has a significant contracture (above 45 degree) , but the other fingers NO CONTRACTURE the solution might be a COMBINED APPROACH, namely minimal invasive RELEASE of the finger plus prophylactic radiotherapy for this finger plus whole hand palm with onl ONE RT SERIES.
So, overall, do not forget to consider RADIOTHERAPY as a treatment option; and if you like you may ask me via E-mail and eventually receive a special medical video consultation with full disease assessment of all your four extremities and broad discussion of the available treatment options from me :prof.seegenschmiedt@gmail.com
Wish you all the best with your (unknown) disease condition and right choices and finally success, Prof. Dr. med. M. Heinrich Seegenschmiedt
With gratitude for all affected patients & medical colleagues who help to advance patient care ...
Dear Prof. Dr. med. M. Heinrich Seegenschmiedt,
Thank you VERY much for contributing your thoughts on my question.
I estimate my specific contracture is about 18 degrees at the MCP and 35 degrees at the PIP, so it is my understanding that RT alone is not suitable.
I understand recurrence is more common after NA/PNF (in comparison to open surgery) and, in my case, perhaps even more likely because I have a small nodule in my other hand and nodules in both feet and also the nodules appeared when I was fairly young (in my 40s). The actual contracture in my right hand started after falling while playing tennis and injuring the ring finger a few years back. The other nodules have remained unchanged for many years.
I understand the suggestion of doing RT after the NA/PNF procedure in order to slow or eliminate future recurrence. I'll certainly talk with Dr. Pess about that idea. Since this will be the very first time that I've needed to have anything done about my DD, though, I am leaning toward waiting to see how quickly the contracture recurs before trying RT.
Thank you again. Regards,
BobL
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