help! info please |
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11/28/2005 09:20
phil_g
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11/28/2005 09:20
phil_g
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help! info please
hi to you all. my name is phil & i'm a third year occupational therapy student with an interest in dupuytren's disease & it's rehabilitation. (i also have the early stages of the disease myself!) Anyway, i'm currently writing my dissertation on the rehab of post fasciectomy dupuytren's and the involvement of occupational therapists/hand therapists & i would really appreciate any information that you would be willing to share about your experiences. any comments given will be treated in confidence and no names will be used. i am primarily interested in anecdotal evidence about the condition and especially the way that the disease has affected you, both physically (functionally) and psychologically. i must stress that it is surgical interventions that i am writing about, not N.A. Thank you in advance for your time, it is much appreciated. cheers, phil.
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11/29/2005 10:47
wolfgangnot registered
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11/29/2005 10:47
wolfgangnot registered
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post surgery
I had surgery on my left hand (1 finger) and it was technically done very well. But afterwards I felt left alone, My hand was wollen and though my finger was straight again, I wan't able to make a fist anymore (took about 3 months to do so). In the mean time I learned that about 10 percent of all patients have problems with swollen hands. My therapist tried to help with careful exercises, I bathed and exercised my hand regularly. Eventually it became OK. How did I feel? Surgery triggered immediate growth of six new nodules and I felt very desperate. Now 3 years after sugery I can use my hand again, better than before, no recurrence there. But heavy spread of Dupuytren to other areas. I will not have surgery again.
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12/20/2005 16:18
J Annnot registered
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12/20/2005 16:18
J Annnot registered
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answer to Phil
phil, I have had DC surgery twice this year 2/14 and 11/7. I had 4 months post op therphy w/ oc therapist and am in therphy again w/ same therapist. I started showing signs of DC in my early 20's ( did not get diagnosis until Jan this year) I am now in my mid 30's and female. Surgery was on same location on dominate hand small digit. Also have in fing fonger. after this surgery I am straight but fond difficulty making fist. I hope this time it will stop for awhile. So far it has moved quickly and had a flair up last week and am currently on steroids for the painful swelling also have hot red swelling in both fingers . I'm not sure what else you would like to know. I amy very healthy otherwise and active in sports and no family history of DC
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12/27/2005 09:53
thebobster1964
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12/27/2005 09:53
thebobster1964
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answer to phil
I am 41,from Scotland and recently..august had surgery for dupyutrens contracture in my right hand...after surgery,I have been unable to move even the fingers which were not operated on,so as a result,I have been signed off of work since august,also my arm is immobile,and i have been back into hospital to have wrist ans shoulder freed up under anaesthetic.I may have to go back in again for more manipulation of shoulder.I am also attending physiotherapy at least 3-4 times a week,and orthopedic clinic once a week,as well as exercises at home...but with frustratingly very little progress.
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03/04/2006 14:21
explorer
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03/04/2006 14:21
explorer
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Try Vitamin K
I have Dupuytren's in my left hand, and hate it. I started Ron Rosedale's The Rosedale Diet, about two months ago, and have been taking supplements as recommended by the book, available in public libraries. He recommends 2000 mcg Vitamin K per day, more if you have been diagnosed with osteoporosis, but, there's also literature you can find on the web about Vitamin K, and connective tissue disease. Two days into going from 100 mcg Vitamin K per day, to 2000 mcg, I have amazing changes in my left hand...reduced pain, increased freedom of movement. I plan to go up to 5000 mcg per day, as I have been diagnosed with osteopenia, but I'm amazed. I'm posting everywhere I can find a Dupuytren's site. He recommends 8000 mcg per day, if you've been diagnosed with osteoporosis.
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03/10/2006 08:19
wach Administrator
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03/10/2006 08:19
wach Administrator
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high dose vitamin K
Are you sure that such excessive use of vitamin K can't have undesired side effects? Vitamin K1 is known to increase blood clotting and I could imagine that it might increase the danger to get a stroke or work adversely to blood thinning medicamentations.
Wolfgang
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04/19/2006 17:13
explorer
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04/19/2006 17:13
explorer
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High dose Vitamin K
Quote:
Are you sure that such excessive use of vitamin K can't have undesired side effects? Vitamin K1 is known to increase blood clotting and I could imagine that it might increase the danger to get a stroke or work adversely to blood thinning medicamentations.
Wolfgang
Wolfgang,
The research I read says K actually has the opposite effect on blood circulation, preventing the platlets, I think it was, from being "sticky". I didn't find any danger of increased risk of stroke, but it was contraindicated for people on blood-thinning medications, such as coumadin. Ironically, alot of people on blood-thinners eventually have osteoporosis, or stroke. Vitamin K has been used in Japan since 1995 to treat osteoporosis. I found a soft gel that has 9mg of K1, as phytonadione, the synthetic form of K1, and 1mg of K2. I found that the naturally occuring form of K1, phylloquinone didn't give me the positive effects with my Dupuytren's the synthetic form does. The one I get is Life Extension, Super K with K2. Amazon.com carries it, as well as alot of vitamin sites online.
Best of luck, David.
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