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Forum for Dupuytren's and Ledderhose 
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  • The Cause of Dupuytren’s Disease: A New Theory!
    • The Cause of Dupuytren’s Disease: A New Theory!
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    09/21/2005 23:48
    Michael L.

    not registered
    09/21/2005 23:48
    Michael L.

    not registered

    		 radiation therapy

    Christine,

    You should also check out the 'radiotherapy' topic. Radiation therapy seems to offer a better outcome than NA, if your hands haven't yet started to contract.

    In any case, don't despair - it's not the end of the world.

    - MML
    09/22/2005 23:56
    Stage One

    not registered
    09/22/2005 23:56
    Stage One

    not registered

    		 Radiotherapy- Whoa

    Hi, everyone. I believe it is too soon to endorse or
    denigrate radio-therapy. I have no personal expertise
    other than to recognise that radiation therapy has collateral damage. Kill some cells, and you kill the
    neighbors. Ain't that special? Would you want to know before-hand? That is my reservation. I am all for advancements; I just prefer safe and predictable future
    outcomes. NA is benign. Is Radio-therapy benign?
    Someone needs to collect data so we can make informed
    choices. When push comes to shove, I will ask a Lariboisiere clinician for my expert opinion. That is just me (two years and holding after NA and no complications.)
    09/22/2005 23:27
    Randy H.

    not registered
    09/22/2005 23:27
    Randy H.

    not registered

    		 Dilemma

    Stage,

    I know ex-cancer patients who feel they owed their lives to what is, effectively, radio therapy.
    Certainly more study with long term outcomes is necessary. However, when you read the recent post by miriam under "Treatment by Dr. E" I feel it unfortunate that this option is probably unavailable to her. But true enough, no one knows with certainty how our friend Wolfgang's hand will be in 20 years. Perhaps experimental stuff like radio therapy should best be reserved for aggressive cases. Problem is, aggressive cases curl fast, and according to Wolfegang, RT works best in, well......Stage One. Dilemma.

    09/22/2005 23:07
    Michael L.

    not registered
    09/22/2005 23:07
    Michael L.

    not registered

    		 RT



    I haven't yet looked into this thoroughly, but I think RT is worth serious consideration. Clinicians and researchers have been working with radiation therapy for cancer for decades now, and have a good handle on dosages and risks. The radiation dosages for cancer therapy are sometimes less than that of a chest X-ray or what is received by staying in a high-altitude city like Denver for a couple of weeks. Has anyone ever heard of someone getting cancer from radiation treatment? I haven't.

    And the payoff of halting Dup's progression entirely is pretty good.

    - MML
    09/23/2005 23:45
    Brent Brewer

    not registered
    09/23/2005 23:45
    Brent Brewer

    not registered

    		 I got it when I was 26!

    I got Dupuytrens when I was 26. My Dad showed developments of the disease when he was 18. My Great Grand Mother passed this curse on to every male decendent in my family. It sucks! I have had one successful surgery on my left hand and 2 fairly successful surgeries on my right hand. The problem is that the nodules grow back in different areas. I am currently searching the country for the best surgeon for a third operation on my right hand. I am 44 now and refuse to let this disease beat me. Don't be afraid, there are alot worse things out there that could happen to you.

    If anybody has a story to to tell, I would appreciate reading about it.

    Brent, Ramona CA
    09/25/2005 23:00
    SusieQ 
    09/25/2005 23:00
    SusieQ      		Brent--your inquiry

    Hi Brent,

    This forum is great but it's hard to pinpoint specific information as the topics often meander off course.

    I would like to suggest that you thoroughly explore a technique referred to as N.A. (needle aponerectomy?) which is much less invasive than traditional surgery, and people who have experienced both methods absolutely swear by it.

    The problem is that even the best Cert. Hand Surgeons have not yet accepted this procedure and will try to discourage you from considering it, (the medical profession being slow to change!). A small but increasing number of practitioners in this country now will do it.

    There's a topic above yours (9/24/05) which lists U.S. practitioners of N.A. Dr. Eaton's website (http://www.handcenter.org/newfile16.htm) is one good place to read up on N.A.

    If you scan through some of the posts on this forum you'll find a wealth of extremely positive experiences with this very minimally invasive outpatient procedure.

    Very best of luck to you!

    Susan

    09/25/2005 23:28
    Randy H

    not registered
    09/25/2005 23:28
    Randy H

    not registered

    		 Unsolisited Advice

    Brent,

    As a patient who *has* had both, SusieQ is right on point. You will also learn that surgery can inhibit the effectiveness of future NA, while the reverse is not true. Why not try the far less Invasive before submitting to the higher test stuff?

    The only down side of NA is a yet unproven but acceptable assumption that NA is more prone to recurrence than traditional Open Surgery. However, as you recognize, in the more aggressive cases it will come back anyway. And, as you may have been told, there is a limit to the umber of surgeries one hand can endure. Not nearly so with NA, as it is so very much less invasive.

    Check it out as SusieQ has suggested

    All the best

    RBH
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