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12/28/2005 23:40
Frances

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12/28/2005 23:40
Frances

not registered

list of NA practitioners

Hi again Wolfgang,

Your work is much appreciated. Many of us have spent what seems to be a lifetime on our computers trying to spread info about DC and its treatment options and it has worked. There were many times in my house where a voice from the other room would yell, 'Your not on that damn thing again are you?'.

Well, the first couple years were the hardest to show that success was being made, but now there is no voice coming from the other room. There is a growing list of doctors, websites, successes from Britian, interest in Austrailia, a newly formed non-profit organization in Germany, info on radiation therapy, and a huge difference when you google DC from what it used to be a couple of years ago. Back then all websites said the same thing - now we are seeing a change in the information that patients are being given about treatment options and it warms my heart. We have made a difference.

Wolfgang, when you are ready, would you consider chapters from other countries? I know it is early for such a thing, but it would be nice to have local chapters where people can meet maybe once a month and talk with actual 3d people who also have DC. Anyways it's just a thought for now.

Take care and God Bless,

Frances

12/28/2005 23:13
tough guy

not registered

12/28/2005 23:13
tough guy

not registered

list of NA practitioners

Wolfgang,

I think the list of NA practitioners on your website should differentiate between those who have been Paris trained and those who have not. Better yet, I hope all the doctors listed have given permission to be listed.

Remember - someone spent almost an entire year advocating specifically for one doctor as an NA practitioner without the doctors knowledge or consent. To this date there has been no public declaration by that particular doctor that they are an NA practitioner. No website, no Paris-training, no visits to this website. We don't see posts from happy patients. I think it's important to clarify if a doctor wants to be there or not, and even more important for patients to know where and if a doctor has recieved any specific NA training.

tough guy

12/29/2005 23:16
Wolfgang Wach

not registered

12/29/2005 23:16
Wolfgang Wach

not registered

chapters from other countries

Frances, having Dupuytren Societies in other countries is a very good idea! We believe that a forum is an excellent means to exchange experience and knowledge but we are afraid that it might have limited visibility. Many Dupuytren patients are older and might not use the Internet (same for doctors). How many people do we reach with this forum? 100? 500? Very important for those who learn from it but globally still very few. We feel that we need to extend into print media and ideally also into TV. We believe we need to visit congresses and universities to get into the training books. All this is beyond what a forum is be able to do but a Dupuytren Society might have a chance.

Dupuytren e.V. is focussed on Germany (that allows us to get donations tax deductable in Germany) and our books are regularily monitored by the German tax authorities. But we don't believe that this disease is limited by national borders and would welcome and support any Dupuytren Society elsewhere. Creating chapters of the German Dupuytren Society in other countries would probably overstretch our capabilities but we could provide experience, literature, web site support, whatever is helpful, and we would love to do it.

Actually a couple of months ago we had pondered about a French web site from Canada. Your proposal is very welcome!

I am off for a week holiday (those Germans ...) but will get back afterwards.

Wolfgang

12/29/2005 23:36
Frances

not registered

12/29/2005 23:36
Frances

not registered

Not a necessary standard???????

Hi Wolfgang,

I read your reponse about training and completely disagree. I would never send a love one to have a medical procedure by a doctor who was self taught for anything.

There have been many arguements about training on this website and are available for all to read. Patients have a right to know there is a difference and make up their own minds. Your website does not provide that opportunity - in fact your response sounds like you are comfortable in making that decision for everyone, you stated, 'What I'm aiming at is that French training is probably good but not necessarily a quality standard'.

I'm sorry but that statement is completely nuts. Everyone here has worked like dogs trying to set a standard so NA remains closed to those looking to make an easy $500/finger. Specific training in NA helps a patient separate the wheat from the chaff. Like I've pointed out before, it only takes a week....so what's the problem with asking for such a small minimum standard?

I can not support a society or website that excludes providing information about doctor training, nor can I support a non-profit organization that appears to knowingly attempt of sway public opinion. Unbiased my friend, that's what we're after. I don't want anyone to make decisions for me, that's why so many of us are so careful and ask questions.

Frances




12/29/2005 23:11
Randy H.

not registered

12/29/2005 23:11
Randy H.

not registered

Consider This:

Francis,

I fully agree with the basic premise of your post. However, here is what's coming.

Eaton:

<<Is Dr. Eaton training other surgeons in this technique? Not yet. Why? Medical liability. Because The Hand Center is a free standing institute without the legal shelter of a university teaching center, all legal experts have advised against training in NA at The Hand Center until the procedure is in "common use" in the United States - a real catch-22. Dr. Eaton is working on an alternative approach to instruct his hand surgery colleagues at the annual scientific meeting of the American Society for Surgery of the Hand in the fall of 2006. >>

In other words, Eaton is gong to do some "Show and Tell" at the convention and call that "instruction". Is he going to them say: "You guys better go to France now before you try this at home." I seriously doubt it. If Eaton successfuly convinces enough CHS that NA is worth a try, this "catch-22" is about to blow the hinges right off the "French Training" door. Will you support the CHSs who only go to Eaton's' presentation? What about a CHS who couldn't make it but watched a friend who did? How are we going to get to "common use" without sitting back and watching the CHS do their thing? Eaton seems ready to roll the dice. He can't see a way around it.

Yes, once NA is in "common use" Eaton will train all commers. But until then, we will have a window in the US where things will be quite up in the air. CHS will have a new toy. The Gene will be out of the bottle. We are gong to loose control evaluating the 50 new CHS doing NA. I think our success may make your position irrelevant. Having helped launch this, we will apparently loose all control. I'm not criticizing your position as I tend to agree with it. I'm just pointing out what I see coming.

(And please be nice to our new German friend. Your sounding a little too much like *me* when I'm in one of my confrontational moods :-)

12/29/2005 23:25
Frances

not registered

12/29/2005 23:25
Frances

not registered

High Class Problem

Hi Randy,

I think it's up to the medical community to decide how to provide training to doctors who wish to learn NA and trust they will come up with something appropriate for the large numbers who *we* anticipate will be interested in learning NA. It's not up to us to say training is not important because we are not able to see how such a large task can be performed.

Malpractice insurance companies put up roadblocks for reasons. One of them is Pedigree because it *is* important. Heck, the medical community wouldn't listen to words about NA because of that very issue. We've come so far Randy, be patient. Just think of the reputation NA would get if one poorly done NA or nerve damage occured by a person who was not consciencious enough to make sure they learned how and when to perform NA correctly.

I stand by my position that patients have the right to know there is a difference between a self-taught NA practitioner and a trained NA practitioner so they can make their own choice. These are not big things to ask. Susan who posted the list of doctors made the destinction between the french trained and non-french trained doctors and many people besides myself feel the same way. A simple (FT) with an explanation will do.

Personally I'd love to be part a formalized DC movement but am not willing to give up the very thing I believe in the most to do that.

As for growling at Wolfgang, you felt my frustration and exaserbation at having to fight this fight again. It's a dead issue. There is so much information here on this website about training that Wolfgang must have anticipated an argument when he decided to exclude any reference to it - and again when he posted 'What I'm aiming at is that French training is good but not necessarily a quality standard'. With nothing yet in it's place that only leaves the self-taught and that's not acceptable.

The one major benefit to the Biospecifics website is that it is impartial and no one can make decisions for others.

D*amit I wish this hadn't happened.

Frances

12/29/2005 23:09
Randy H.

not registered

12/29/2005 23:09
Randy H.

not registered

High Class Problem

Hey Francis,

You and I have been on the exact *same* page for a long, long time now (well, almost exact). I am sympathetic to your concerns here. All I am trying to do is point out that *if* Eaton does what it *looks* like he is going to do, it's going to get complex keeping score.

It will be the most critical time for NA's future. Your concerns are valid in my mind. I just don't know what we can do but watch this being hatched. All I'm doing is anticipating what comes after the convention. Eaton is going to energize and encourage a bunch of non (FT) CHS to go out and do NA. I'm just pointing out that this is coming in 2006.

But this is *months* away and I may be getting *way* ahead of the curve. Let's see what Eaton actually does. Let's just file this under "High Class (future) Problem"

All the best for the New Year for you and the man in the other room.

Randy

12/30/2005 23:40
Frances

not registered

12/30/2005 23:40
Frances

not registered

Knuckle problems

Hi Randy,

Like yourself I'm concerned about NA getting out of control after the presentation. I'm betting/hoping that the conservative element of the medical community will ensure an orderly procedure is put in place for educating surgeons. They've been through this before with other new techniques so they'll find a way to make it work.

A legit non-profit organization would be helpful to patients and surgeons particularly during this time of transition and for this reason I think local chapters are a necessity. Human contact makes difference in alleviating concerns/fears. When you look at the big picture, yes we are bringing a new procedure forward, but we are also presenting a new attitude/perspective,

'My hands don't have to be perfect, I don't mind having repeat procedures (it's no different then getting my teeth cleaned every year), and yes I've accepted the reality that my DC is more then likely going to come back'.

These are big changes since we all joined this website so long ago. Huge changes. Just talking about the fact the DC comes back is big. Now knowing that there really *is* a continuum of DC severity. That females and young people get it more often then we realized. That some insurance claims have been paid for it as a disability. Some countries will consider workers comp claims if there are no obvious signs of hereditary DC. Some governments call DC rare while others call it common. These are all things that affect patients, information that we did not have a chance to get/share before, and can now pass on.

Like you I see a future, find it exciting, but also a uncertain. Trust and plug away until it unfolds is what I am going to do, just like what we have done in the past.

Frances

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