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Forum for Dupuytren's and Ledderhose 
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  • Saw Dr. Eaton July 2nd
    • Saw Dr. Eaton July 2nd
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    08/30/2004 23:00
    Steve

    not registered
    08/30/2004 23:00
    Steve

    not registered

    		 Why any other surgeon ?

    I will be keeping Dr Eaton updated on my progress. He already redid the first procedure after 7 weeks which was sooner than he normally would consider but he's never seen a regrowth so quickly before...lucky me. If it stays at 20 degrees I will be happy now. I have a bunch of surgeon appointments later in Sep that I booked as a backup in case this happened...need to debate which procedure would be best to prevent regrowth. From what I've read, a full skin graft is recommended for those with aggressive forms of the disease. Does anyone know someone or have you had the skin graft technique done instead of the traditional Z Plasty?
    08/31/2004 23:41
    George Barbarow

    not registered
    08/31/2004 23:41
    George Barbarow

    not registered

    		 Why any other surgeon ?

    Hi Steve:

    I am puzzled as to why you would consult any other surgeon when Dr. Eaton has treated you. He has done the old procedure many times before he became aware of the NA.

    I would certainly speak with him again before going to someone else.
    08/31/2004 23:53
    steve 
    08/31/2004 23:53
    steve      		so far so good

    If I'm going to have full blown surgery at some point, I don't plan on travelling to Florida to have it when I live in Boston where there are also world class surgeons. The recovery would not be pretty and travelling would be extremely difficult with such an invasive procedure. I have a baby at home and just can't be laid up in sunny florida for a while. He admitted to me if NA failed again surgery is the next route.
    09/04/2004 23:56
    Tom 
    09/04/2004 23:56
    Tom      		so far so good

    I had the NA procedure done last friday and am very pleased right now. I am living in Germany and had the procedure done in Duesseldorf by Dr. med. Kurt Groeben. I have had DC for about four years.
    09/16/2004 23:09
    Steve

    not registered
    09/16/2004 23:09
    Steve

    not registered

    		 1 month later - failure #2

    Its been a month since my repeat NA procedure on my right hand and its completely regrown again leaving me with 45 degree contractures after leaving Dr. Eaton's with a flat hand twice this summer. I'm going to be upping my colchicine dose per doc's guidance and I am trying 2g daily of acetyl-l-carnitine which has shown in studies that it helps pyronies disease. I am hoping I can hold out and get in the collagenase studies or its off to the knife for me.

    Note, I am only 32 so my bad NA experience is most likely a fact that I have an aggressive form of the disease. It is not a reflection on NA I believe. Dr. Eaton has been great to me. But I just wanted to share my experience as it is unsual.
    09/17/2004 23:19
    Randy H.

    not registered
    09/17/2004 23:19
    Randy H.

    not registered

    		 Take Your Best Shot

    Steve:

    Having had one surgery myself I believe you've done exactly the right thing: Try the less expensive, less traumatic, less invasive approach first, then move on to the next level. I certainly hope that traditional surgery serves you well. The instance of reoccurrence in VA Vs surgery has been a topic of much debate. The French have data to suggest that they are roughly equivalent. Others would argue that since they and others haven't had reoccurrence, surgery is preferable in the long run. Unfortunately we simply don't have the data that a randomly assigned long term study could give us. When NA becomes more wide spread we will have at last "clinical" evidence that supports one side of the debate over the other. However, you probably know the general wisdom that the aggressiveness of the disease is probably more significant to reoccurrence than the procedure performed. Again, I hope surgery does the trick, but I'm not sure the data would suggest great optimism. Collageninase essentially does bio-mechanically the same thing as NA. It's longevity is unknown. Frankly I'd rather have NA every six months than surgery every three years. But that's because, as it turns out, my hands don't recover at all well from the knife, so I'm biased by my experience.

    Did you use your hands in any way that might have been traumatic?

    09/17/2004 23:07
    Frances

    not registered
    09/17/2004 23:07
    Frances

    not registered

    		 So Sorry to hear this

    Dear Steve,

    I'm so sorry to hear this. Can Dr. Eaton get you into the phase III trials as an alternative to surgery? And, please don't leave this forum if you decide to follow through with the surgery, you and your case are important to the rest of us.

    God Bless,

    Frances
    09/17/2004 23:02
    Steve

    not registered
    09/17/2004 23:02
    Steve

    not registered

    		 recurrence

    Thanks for the kind words...I did not have trauma, its hereditary for me. I am hoping to get in the trials but Dr Eaton doesn't have any connection. If I do have surgery, I may consider the skin graft to prevent recurrance given my condition. Has anyone had the graft here?
    09/17/2004 23:29
    Kristen 
    09/17/2004 23:29
    Kristen      		recurrence

    Steve - I think we've discussed this before. I have 20 years on you, but a similarly aggressive case. I've been having NA every 6 months for the past 3 or 4 years. I don't see surgery as an answer, since some people with similarly agressive cases have gone through the surgery only to have it return in a few months. I don't find this acceptable. NA is not fun, but it's only a bit more intrusive than having your teeth cleaned, so I'll continue with it. I think you summed it up when you said that the recurrence said more about the aggressiveness of your disease than it does about the NA procedure. A rapidly growing case is just something to live with and NA seems to be the best way to deal with it. As I told Dr. Eaton, "This sucks, but on the up side, I've saved a bundle on rings and manicures." Kristen
    09/17/2004 23:38
    Kristen 
    09/17/2004 23:38
    Kristen      		Skin graft

    Steve - Forgot to mention in the previous email - Dr. Lermusiaux highly recommended that I have surgery with skin graft on my pinky - that it only recurs in 5% of cases after a skin graft. Dr. Eaton didn't recommend it - said in a very nice way that that's a bunch of crap - he'd seen it regrow numerous times underneath a skin graft. I like and respect both doctors and don't know what to think other than I don't want surgery OR a skin graft. Good luck. Kristen
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