| Anyone doing research in the U.S. |
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03/28/2007 01:48
divergeorge70 
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03/28/2007 01:48
divergeorge70
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Anyone doing research in the U.S.
I was wondering if anyone knows of any clinical studies being done on DuPuy Trens contractures at this time. I am 36 years old, and have a very aggressive form. I have had a total of four surgeries on my hands since 2000. I had my right 5th finger amputated because of it, and the "knots" are back in both hands. I even have the "knots" appearing on my feet. I have nodules on all my knuckles, and my fingers have contracted down to 90 degrees and it has only been a year since my last surgery, with skin grafts.
I am looking for any information on this disease, including any information on contributing factors, possible precipitating factors, etc. I would be willing to be examined for research purposes, as my Doctor has said he can't do surgery again, unless it gets to where I can't use my hands, because of all the previous surgeries. There are many things I can no longer do because my fingers catch on things, or just get in the way.
If anyone has any information whatsoever, I would really appreciate being contacted.
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03/28/2007 06:24
Wolfgangnot registered
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03/28/2007 06:24
Wolfgangnot registered
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Re: Anyone doing research in the U.S.
George, you might take NAC (see http://www.dupuytren-online.info/other_therapies.html and http://www.dupuytren-online.info/research_funding.html). This is not an established theraphy and might even turn out to be useless. It's still experimental but not expensive. If it works it probably works best on nodules, not on cords.
If you have a access to radiotherapy then this could also be an option for your nodules. Radiotherapy can stop growth of small nodules and slow down growth of stage I cords. Might be a good option for your new Ledderhose nodules. But it seems that radiotherapy is available in the US only at expensive clinics. It's much cheaper in Germany.
Wolfgang
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03/31/2007 17:05
bstenman 
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03/31/2007 17:05
bstenman
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Re: Anyone doing research in the U.S.
You may have too much scar tissue for another open hand surgery but it would not hurt to contact Dr. Denkler and get his opinion on NA for your hands to help with the contracture.
Radiation is your best bet for reducing the chance for further progression but it will not help the contracture but may help with softening nodules.
I had a Na procedure on March 12 of this year on both hands and one is back to 100% and the other is 95% (doing stretching exercises during the day) recovered. I am now scheduled to meet with the doctor in Essen on April 19 at the clinic to be evaluated and hopefully receive radiotherapy treatment to either stop the progression of the disease or at least significantly slow it down.
I could find nothing that indicated radiotherapy had any significant side effects and nothing to indicate that it might interfere with future surgery should that become necessary.
NA is a low cost, low risk, and fast recovery option worth investigating.
Bruce
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05/01/2007 01:12
GGG56not registered
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05/01/2007 01:12
GGG56not registered
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Re: Anyone doing research in the U.S.
Thanks for the info regarding StonyBrook.
I'm newly diagnosed and starting to freak out about this stuff.
The nodules in the palm and underside of the knuckles appeared a few weeks after carpal tunnel release and triger finger release ( 2/12/07 )on my my left hand. It's painful and the clicking of the
fingers only adds to my anxiety I've been to several experts and am still confused about the options. I'm was an active guy, and hope to remain employable. i'd appreciate any input..thanks in advance.
Joe ( NYC )
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05/01/2007 23:28
Mark_D 
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05/01/2007 23:28
Mark_D
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Re: Anyone doing research in the U.S.
Joe:
Before you freak out too much, do some research about the N.A. procedure.
It's quick & relatively painless, but there are only a handful (forgive the pun) of Hand Surgeons in the U.S. who know how to do N.A.
My brother lives in New York, and has Duputtren's. I told him that my advice is to fly out to California when he needs treatment.
That's because I'm a patient of the two CA Docs (Keith Denkler & Prosper Benhaim) who do N.A. in this state. Thus, based on personal knowledge, I'm very comfortable recommending each of them.
I've read great things about Dr. Charles Eaton in Florida.
Also, I think that there is a Doc in New Jersey who does N.A. I just don't know anything about him.
You'll see on this Forum that our European brethern have another early option - Radiation. But, that's not generally available in the U.S., so you'd probably have to fly across the Pond to get that therapy.
Hope this helps.
Mark
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05/02/2007 12:26
ellenpao
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05/02/2007 12:26
ellenpao
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Re: Anyone doing research in the U.S.
Dr Gary Pess is the doctor in NJ 732-542-4477. It's in Eatontown, right off of the Garden State Parkway. I've had 3 NAs with Dr Pess, and he is terrific!
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05/06/2007 16:31
JWnot registered
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05/06/2007 16:31
JWnot registered
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Re: Anyone doing research in the U.S.
Quote:
Dr Gary Pess is the doctor in NJ 732-542-4477. It's in Eatontown, right off of the Garden State Parkway. I've had 3 NAs with Dr Pess, and he is terrific!
Any advice with regard to Dr. Pess and the NA procedure? I am in the initial work up stage (just submitted 4 photos for his review) prior to making an appointment. Did you stay overnight, was light sedation needed, how long the process take, etc. Thank you!
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