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09/29/2003 23:08
GLENNnot registered
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09/29/2003 23:08
GLENNnot registered
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DON~sq~T DO THE SURGERY!!!!
TO ALL OF YOU OUT THERE WITH DC, DON'T DO SURGERY!! MY FATHER HAD THIS WEIRD DISEASE AND HAD SURGERY 25 YEARS AGO AT A VA HOSPITAL. BACK THEN THEY CALLED IT "STRIPING THE HANDS". WHICH MEANT THEY CUT THE TISSUE WIDE OPEN AND REMOVED EVERYTHING THAT WAS NOT "NORMAL" HAND!! HE HAD BOTH HANDS DONE AND WAS SENT HOME CURED! HE DIED 11 YEARS AGO AND COULD HARDLY FEED HIMSELF BECAUSE OF THE SCAR TISSUE. I DEVELOPED DC IN BOTH HANDS AND BOTH FEET. I HAVE HAD SURGERY ON BOTH HANDS AND ONE FOOT. THE SURGERY HAS MADE MY HANDS MUCH WORSE AND I CAN NO LONGER PLAY A PIANO OR DO ANYTHING THAT REQUIRES A LOT OF FINGER SKILL. TYPING THIS IS VERY HARD. WHAT I MEAN IS THAT THE SURGERY DOES INDEED REMOVE THE DC TISSUE, BUT CAUSES MORE DAMAGE WITH SCAR TISSUE. THE TRAMMA OF SURGERY WILL CAUSE THE DUPUYTREN TO GROW FASTER ALSO. I AM HOPING FOR A DRUG THAT WILL DISOLVE THE EFFECTED TISSUE . THAT IS OUR ONLY HOPE. BY THE WAY, MY 27 YEAR OLD SON NOW HAS DC IN HIS RIGHT HAND AND STARTED AFTER HE BROKE HIS HAND. THERE IS SOME STUDY BEING DONE WITH CALOGENASE(SP)?. ANYBODY KNOW ABOUT THAT? SEEMS THAT IT CAN BE INJECTED INTO THE EFFECTED TISSUE AND IT WILL DISOLVE. BUT OF COURSE IT COMES BACK WITH TIME. BUT IT WOULD BEAT THE HECK OUT OF SURGERY.
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04/23/2004 23:45
Debbie 
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04/23/2004 23:45
Debbie
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poor surgical results
Glenn, I had the DC surgery on my right hand in Oct. 2003 and I mostly agree with your comments. I am very disappointed in the results. My hand is actually worse now than before. I can flatten it better, but ironically, where the finger was curling closed before the surgery,now I can't bend my fingers in to the palm. Its stiff and sore. I have lost strength in my hand. I type for a living and it has not affected that, but it is definitely weaker - you have to be careful when carrying heavy objects, or support it with the other hand. I am now developing DC in my left hand. Luckily it takes years to progress to the point where surgery is required. Unfortunately, I don't believe there's much choice about whether or not to have surgery, without it the disease continues to get progressively worse, until the finger curls right into the palm and then you really can't do certain things. I hope they come up with something new before I'm in need of surgery again.
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04/23/2004 23:35
Randy H. not registered
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04/23/2004 23:35
Randy H. not registered
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Welcome Abroad.
Glen, Debbie.
Well, what you have finally done is come to the right place! It's obvious from your posts that you are new to this site. Read the posts about NA and Dr. Eaton. Welcome abroad.
Now...........what I want to know from you is how hard was it for you to find this site? How many other sites did you visit before you found us?
Debbie: what prevented you from finding this site in Oct of 2003? Did you even try?
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04/23/2004 23:49
Georgenot registered
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04/23/2004 23:49
Georgenot registered
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hypertension drugs
There is hope for us. They are in phase III clinical trials for a clostridial collagenase injection that will dissolve the diseased tissue while hot harming the surrounding tissue. I have no idea when or if it will be approved by the FDA but if it is, I will be a fantastic breakthrough. The only problem would be getting the stuff because I sure demand will be extremely high once it is approved. The company name is biospecifics. Good luck.
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04/23/2004 23:48
Randy H. not registered
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04/23/2004 23:48
Randy H. not registered
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hypertension drugs
George,
I talked to a BioSpecifics administrator on the project (it may have been the company president). They are ***at least*** two years away. Probably more like three because the full and necessary trials at multiple locations have not begun. Only a portion has been started and the research design calls for them ALL. They need additional $$$$$. Any venture capitalist along us? BioS would love to hear from you!
Meanwhile there is NA.
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