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08/14/2003 23:23
JERRY 
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08/14/2003 23:23
JERRY
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For your information:
Hello Everyone,
It has been 1 year since the informative Dupuytren’s survey has been completed and I now believe it is time for re-evaluation.
My hand that experienced the APO procedure 2 years ago (June 2001) remains as the day it was performed: Excellent results.
During July 2002, conventional surgery was performed on my right hand with dire results: Totally unsatisfactory.
In addition; much trauma was inflicted to the point where both hands now have new and enlarged nodules and one foot has developed a nodule and cord: Ledderhose.
This is the type of information I would appreciate receiving from you, whether or not you participated in the survey.
Any additional information that you feel may be pertinent and helpful to others will be greatly appreciated.
The data provided by you has been used to exert pressure upon the medical establishment of our dissatisfaction with their current debilitating surgical procedure. I have learned that we have already made a dent in their thinking, therefore it is incumbent upon you to help in our efforts to bring about the change that is necessary, so we may return to living our lives in a more normal fashion.
As in the past; all information, as well as e-mail addresses will be retained in a confidential manner.
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08/15/2003 23:13
kennynot registered
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08/15/2003 23:13
kennynot registered
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For your information:
Jerry. Do you want us to post a small update here or e-mail you for the survey. or both?
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08/15/2003 23:28
JERRY
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08/15/2003 23:28
JERRY
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For your information:
It will be best to respond via E-MAIL.
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08/20/2003 23:23
JERRY
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08/20/2003 23:23
JERRY
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For your information:
My current request for an update regarding previous procedures and/or changes in conditions has so far produced 29 procedural responses.
13 SURGERIES: 3 Good, 2 Fair, 5 Bad, 3 Awful
Most reported post surgical trauma affecting extremities.
16 APO (NEEDLE): 14 GOOD, 2 FAIR (some regression)
No report of resultant trauma or damage.
We require much more input to get this type of message to the attention of those that are resisting Aponevrotomy; the only alternative treatment now available to us.
PLEASE HELP BY SUBMITTING INFORMATION ABOUT YOUR CONDITION.
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10/23/2003 23:20
Donald Westinnot registered
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10/23/2003 23:20
Donald Westinnot registered
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Surveys
I am going to France for NA this spring. I will email you with the results when I return home.
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10/23/2003 23:40
JERRY
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10/23/2003 23:40
JERRY
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APO
Donald,
Good Luck with your upcoming NA procedure and your willingness to share your results.
It is most unfortunate that so many plead for help, but will not offer any helpful information.
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10/24/2003 23:17
Charlie
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10/24/2003 23:17
Charlie
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APO
If I can get a reply from Dr Badois I will let you know how it comes out. I strongly support the concept of keep track of the results of hand surgery vs APO. When I went to my hand dr. I asked him how sucessful his hand operations on Dupuytren's Disease were. He said few complained to him so he guessed most were pleased. That was a red flag for me. If a dr. does not care enough about his patients to track and keep records on the relative sucess of his operations, I want nothing to do with him!
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10/25/2003 23:12
tomnot registered
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10/25/2003 23:12
tomnot registered
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12?
Hi Dave, I think you miss the point. No one here, that I'm aware of, is against surgery per se. Most of the debate is around which technique is the least invasive and least risky. Those factors considered, its obvious why NA is the preferred technique of many here.
There is also a great deal of consternation with an apparently inflexible medical hierarchy that many perceive to be more interested in the bottom line. For many other afflictions, such as allergies, there is a wealth of methodologies and procedures available to attempt to address the problem. For Dc, here in the US, we are limited to a much more invasive surgery than what is available in other parts of the world.
One thing I do find interesting, since the percentage of people with DC is relatively small, how have you met so many with this affliction? Since I became aware I have it which was early last year. I've only met two others with it. A co worker and an aunt. This co-worker of mine, incidentally, said that his MD had remarked to him 'I wouldn't want that surgery!'.
I think people here are frustrated with the lack of viable options. Basically if they cannot afford a trip to France, they have no choice regarding their treatment whatsoever. I think it's very easy to understand the anger that that has engendered.
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10/26/2003 23:43
Mary Bethnot registered
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10/26/2003 23:43
Mary Bethnot registered
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12?
Dave,
I don't think you need to worry about flaming emails
from this forum. We regularly use our email address and have received only friendly emails, usually asking for more
details about what we've posted. Have never read a survey
re: surgery vs. NA results, only Dr. Badois's NA results.
Jerry has tried very hard to put together a broader survey.
Please respond to his survery. Though it's well known that
he's in favor of NA, he is trustworthy and will record what-
ever results you send.
Also, agree with Tom that many are not against all DC
surgery, per se, just want to have all options known and
available. The European countries where NA is done also
have Dr's who provide fasciectomies. We know a couple of
people who were pleased with surgery, but more who weren't.
The two with good results had minor cases and very limited
surgery. The ones with agressive cases had poor results and
problems. The disease is certainly unpredictable and each
patient different.
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10/27/2003 23:03
Amanda Knowlesnot registered
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10/27/2003 23:03
Amanda Knowlesnot registered
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12?
How is it someone gets diagnosed with DC, and suddenly knows the personal medical history of 12 close people who have DC? Hard to believe this isn't a doctor or someone exaggerating.
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