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07/19/2003 23:04
Richard
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07/19/2003 23:04
Richard
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NA
Having had four surgeries for dupuytrens disease over the last ten years I feel I'm quite "qualified or exper- ienced" to discuss the need for a better alternative. My surgeries have been extensive, involving all of the joints of all the fingers on the left hand and palm. On my right hand only two fingers and a portion of the palm. These surgeries have resulted in scar tissue, nerve and blood vessel damage that is worse than the DD. The last two surgeries were performed in 2000 and 2002 after I had learned of NA. My esteemed surgeon convinced me (yes he talked me out of NA) that only surgery could help for DD. What an ignorant, close minded group some of these plastic and ortho surgeons are! My dear wife Mary Beth has researched alternatives and literally begged these surgeons to provide me w/injections, topical verapamil, or less invasive surgical procedures. They haughtily informed us none of it would work! In March, I found a dermatologist who started injecting my nodules with kennalog (triamcin- olone acetonide). Within weeks the nodules were decreasing in size and becoming softer. The intense itching stopped, and the pain from simple things like turning a door knob diminished. In May I started using topical verapamil on the ledderhose in my toes of left foot. The nodules have not increased in size as they had been and seem to be soft- ening. I have just returned from Europe where over three days NA was performed on both my hands. The results were spectacular considering what my European Dr. had to work with. The fingers and part of the palm on my right hand where no surgery had been done were completely straightened. The remaining fingers were straightened or improved, some as much as 95 percent. For over four months the pain in my left hand, elbow and shoulder had required medications to relieve the pain. Mary Beth asked me this morning if the pain had lessened and it occured to me that I had felt none of the usual cramps and aches that had so distracted me of late. I have owned and operated businesses for some 25 years or so. I have found you can't buy a truck from a grocery store and you might as well talk to a barber as to a sur- geon if you want any options for dealing with DD. In all cases surgery should be the last resort for dupuytrens because alternatives do exist. Respectfully, Richard B.
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07/19/2003 23:04
Randy
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07/19/2003 23:04
Randy
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NA
Richard,
Thank you for your encouragement, thought it seems you've paid for your wise advice with at the cost of much pain and suffering. Congrats on yet another testimony to the effectiveness of French NA!!
Now three months into recovery from my first DC surgery I told the man who is probably among the finest hand surgeons on the West Coast that it would be a Cold Day In Hell before anyone cuts my other hand, which immediately after surgery decided to flare up with lumps of it' own. Often, surgery only spreads the disease.
Richard, you forget to mention the great results of Cordase from BioSpecifics. FDA approval looks to be two years away, assuming the long awaited Phase III trial goes as expected. It may prove to be better than NA as the injected enzyme actually dissolves the rouge collagen.
For those on the verge of surgery.....don't. I haven't had NA, but trust me, if necessary (and God willing it will not), I would fly to France in a heart beat.
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07/25/2003 23:00
Sara
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07/25/2003 23:00
Sara
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NA
Just one word of advice to all new sufferers. Do NOT have surgery unless absolutely necessary. A huge waste of money and ruins your fingers. Limits future options. Worst mistake I have ever made. NA much better. I have had experience of both and believe me, I would NEVER consider surgery again. Sean must be the most fortunate person to have such a good result.
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07/25/2003 23:39
Sean
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07/25/2003 23:39
Sean
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Surgery
Sara, I'm sorry that you had a bad experience with surgery. But, because your experience was bad, it doesn't mean that everyone has bad experiences that "ruin your hands". There are a handful of people on this forum who repeat over and over that they had a bad experience. If it weren't for those four or five people continually repeating their bad experience, you wouldn't hear that many complaints. Considering there are thousands of DC surgeries worldwide each year, there are not that many complaints on this forum. Perhaps NA is better for some people, but I have not known anyone who has had negative experiences from surgery like those repeated by a few on this forum.
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07/25/2003 23:43
Mary Bethnot registered
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07/25/2003 23:43
Mary Bethnot registered
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Dupuytrens Sufferers United
Sara, I am sorry that you had a bad experience with surgery but I truly mean it. Believe me, you are not the only one, nor are 4 or 5 others. Many have and you are so right, it is a waste of money not just yours but your insurance co's as well. It does ruin fingers and limit future options just as you stated. Sean says that thousands of these surgeries are done annually, where does he get his info? Full of it (uh info, I mean). Make sure you post your email address. You will hear from us soon. HE reminds me of Custer, does not see the last stand is near.
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07/25/2003 23:21
JERRY
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07/25/2003 23:21
JERRY
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Gary/Sean again
Two great posts. Thank you Sara and Mary Beth for telling it as it truly is. Conventional surgery for D/C is merely a goldmine for Gary/Sean's surgeon friends. Yes Gary: Thousands of surgeries are performed, I.E. over and over again on the same uninformed patients.
Richard's recent NA procedure finally restored his surgically crippled hands to a functioning state. Of course that troubles you. You would have been happier had he succumbed to a fifth debilitating surgical procedure. Then Mary Beth would have been in a quandary: Should she feed her 7 year old daughter or POOR RICHARD?
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07/26/2003 23:54
TOmnot registered
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07/26/2003 23:54
TOmnot registered
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Warning to Newcomers
Warning to newcomers: Gary/Sean is only looking out for the interests of the American medical industry. Some theorize that he is paid to sway people away from viable alternatives. Do not be intimidated by his insults, pseudo knowledge, and high handed hyperbole. Please, if so inclined, take your time and read through the threads and many postings and make up your own mind.
You'll also notice, that when reading the effusive praises of the French NA technique, that Sean/Gary is nowhere to be found and uncharacteristically silent.
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07/26/2003 23:41
John Wnot registered
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07/26/2003 23:41
John Wnot registered
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hyperbole
hyperbole is right, hyperbole is what Sean/Gary says. He's wrong. NA will become the method of treatment one day. If you have the genetic tendency and your hand gets injured, the wayward tissue will keep laying down more scar tissue. Reason enough for no more traditional surgery.
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07/26/2003 23:27
Randy not registered
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07/26/2003 23:27
Randy not registered
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Optimistic
John:
It would be great if NA became an alternative in the US and Canada. However in my opinion the injectable collagenase (created by the sponsor of this forum) has a better chance of acceptance much sooner. I'll be relieved when the long awaited FDA Phase III gets underway. What I like about the possibilities is that is actually dissolves the unwanted tissue, therefore removing it, rather than just cutting it in two. When you deduct the cost of travel to Europe and the fact that it will be covered by insurance, the cost will not be a consideration. I think that's our long term hope, with NA as a temporary back up solution. It would be great to have a clinical study comparing the safety and effectiveness of both, but now I'm really dreaming. And don't worry; I haven't been hired by BioSpecifics to hype their product. I'm just optimistic. Phase I and II went quite well.
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07/26/2003 23:07
toMnot registered
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07/26/2003 23:07
toMnot registered
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Collagenase fees
My own humble opinion is that collagenase may become an acceptable alternative to surgery here, because it may be expensive. The American medical industry seems to despise cheap and/or inexpensive solutions.
I suggest that, before getting doe eyed about collagenase, reading some of the material (I believe on Walt Stagners page or some of Jerry's postings) indicating that collagenase could be potentially dangerous.
Either way, wouldn't it be nice to have a variety of choices available?
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