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Seeking Doctor Experienced with Xiaflex
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01/06/12 08:10
Maddie 
01/06/12 08:10
Maddie 
Seeking Doctor Experienced with Xiaflex

I am looking for a hand surgeon in the U.S. who is really good and has a lot of experience with Xiaflex.

Some background: I had an NA procedure on a cord in my thumb web done last summer by Dr. Denkler in the San Francisco Bay Area. I was very happy and it and loved Dr. Denkler. However, I also have a beginning contraction in the pinkie on my right hand that Dr. Denkler said NA wasn't suitable for it because there was too much risk of nerve damage in that location. He thought Xiaflex would work well for it, though.

The problem is that I live in Washington, D.C., and really prefer not to travel all the way across the country for this. (Last summer I was in the San Francisco Bay Area visiting friends anyway.) I don't mind traveling to find a really good, experienced doc, but would prefer sticking to the East Coast or Midwest so it's a shorter trip.

I checked the Xiaflex website and it lists a number of doctors in the DC and Baltimore area who administer Xiaflex. However, I want someone who has used Xiaflex a lot and is really experienced with Dupuytren's in general. It would be really nice if they also do NA, as I may need that again in the future.

BTW, one thing Dr. Denkler said to me was that he thought that since I have been very proactive in dealing with my Dups (I had RT pretty early on, and have now started in with Xiaflex and NA to address the cords that had alreay developed), he thought I could go the rest of my life without any significant contracture and without ever needing open surgery. Even though my Dups is quite aggressive, he said that he thought Xiaflex and NA could keep it under control. Right now I can still "pass" the tabletop test, and I hope to keep it that way without open surgery.

It is very frustrating that so much of the medical establishment -- and the insurance companies!! -- do not share this vision of early treatment for this disease.

Anyway, if you know of a really good Xiaflex doc on the East Coast or in the Midwest, I'd love that info. One thought I had was Dr. Easton in Florida, but his website only mentions NA. Does anyone know if he does Xiaflex also?

Thanks for any help you can provide!

Maddie
Washington, DC

01/07/12 01:25
hammer 
01/07/12 01:25
hammer 
Re: Seeking Doctor Experienced with Xiaflex

Hi There,the Indiana hand Institute has the Doctor that helped get Ziaflex on the market.F Thomas Kaplan is his name.He is the Doc doin the injections on the Xiaflex.com website.He is at "indianahandtoshoulder.com" they r doin a multiple cord study on Xiaflex right now.Dave

01/10/12 07:49
richardt 
01/10/12 07:49
richardt 
Re: Seeking Doctor Experienced with Xiaflex

Dr. Kaplan at the Indiana Hand and Shoulder Center in Indianapolis is good, I had an xiaflex injection from him as part of a clinical trial last year. Closer to your Washington D.C. home, is Dr. Lawrence Hurst at Stonybrook in Long Island. He was part of the group that orchestrated the clinical trials of Xiaflex. I had graft surgery from him, and found him an excellent physician.
good luck.

02/23/12 21:39
Maddie 
02/23/12 21:39
Maddie 
Re: Seeking Doctor Experienced with Xiaflex

Thanks very much to you both for your responses! And my apologies for not responding sooner. I left for RT in Germany soon after these posts, so it fell through the cracks.

Still trying to figure out my next step. I have scheduled a consultation with Dr. Eaton to discuss all my options, but he said he doesn't do a lot of Xiaflex, so I may set up a consultation with a Xiaflex specialist as well. Too bad everyone is so spread out around the country! (Though at least Dr. Eaton is near Ft Lauderdale, not a bad place to go this time of year.)

Maddie

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