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03/29/2003 23:33
Julinot registered
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03/29/2003 23:33
Julinot registered
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Kenny
Kenny,
Your experience reminds me of my first surgery. The doctor who performed it was a orthopedic surgeon, not a HAND surgeon. When I went to him he appeared knowledgable and confident in doing the surgery. I naively agreed to the surgery without asking the right questions. Within 3 months of surgery a cord began to reform in the exact same location of surgery. I too did not have much in the way of PT after surgery.
Upon my second surgery in the same fingers(ring and little finger LH), I had extensive PT for six weeks, night splint and multiple daily excercises. The surgery was done by a hand surgeon who has done over 500 DC procedures, and explained to me the importance of complete removal of the DC diseased tissue and rigerous PT. Since I have an agressive case of this disease, I have recurrence but not in the exact location of the surgery, although proximate to the incision(surgery #2 was done in 1999).
Needless to say, if you decide to have surgery, the advice I would like to share:
1. Locate a good hand surgeon who has done this procedure many times(500 sounded pretty good to me, I nixed one surgeon who claimed to he did ~6 a year).
2. Ask lots of questions(read these forums and Walts page, follow the links, it will help you gain an understanding of DC and the questions you should ask a surgeon)
3. Follow the rigerous PT your doctor prescribes (he will if he is knowledgeable about DC)
4. Consider the alternative solution(s); NA, or collagenase if you can wait the 2++ years until approval.
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03/29/2003 23:34
Julinot registered
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03/29/2003 23:34
Julinot registered
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Kenny
Kenny,
Your experience reminds me of my first surgery. The doctor who performed it was a orthopedic surgeon, not a HAND surgeon. When I went to him he appeared knowledgable and confident in doing the surgery. I naively agreed to the surgery without asking the right questions. Within 3 months of surgery a cord began to reform in the exact same location of surgery. I too did not have much in the way of PT after surgery.
Upon my second surgery in the same fingers(ring and little finger LH), I had extensive PT for six weeks, night splint and multiple daily excercises. The surgery was done by a hand surgeon who has done over 500 DC procedures, and explained to me the importance of complete removal of the DC diseased tissue and rigerous PT. Since I have an agressive case of this disease, I have recurrence but not in the exact location of the surgery, although proximate to the incision(surgery #2 was done in 1999).
Needless to say, if you decide to have surgery, the advice I would like to share:
1. Locate a good hand surgeon who has done this procedure many times(500 sounded pretty good to me, I nixed one surgeon who claimed to he did ~6 a year).
2. Ask lots of questions(read these forums and Walts page, follow the links, it will help you gain an understanding of DC and the questions you should ask a surgeon)
3. Follow the rigerous PT your doctor prescribes (he will if he is knowledgeable about DC)
4. Consider the alternative solution(s); NA, or collagenase if you can wait the 2++ years until approval.
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03/29/2003 23:43
Julinot registered
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03/29/2003 23:43
Julinot registered
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Jerry/Sean
Jerry,
Could you post the reasons of the people who were disatisfied with NA? I am considering this procedure(as you know for at least a year!) and was suprised by such a high percentage of disatisfaction.
BTW, both you and Sean have made useful contributions to this forum. We all have our opinions and want a better solution to this affliction, so I hope you continue your positive comments and help.
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03/29/2003 23:45
Richard
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03/29/2003 23:45
Richard
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Gary/Sean
Gary/Sean, Mary Beth and I are probably naive, posting on a forum such as this, but my DC is a reality that I live with which is probably worse than what you have encountered. You seem obsessive in opposing anything other than tradit- ional surgery. You have posted excellent info at times, you have posted diatribes without basis. You seem to represent only the entry level or less invasive DC disease don't speak for me or others who have an unimaginable condition, for which surgery is no longer an option due to the complications of repeated surgeries. We are desperate for answers not arguments. Now, for whatever it is worth the Kennalog injections have flattened one of my nodules and reduced pain from pressure on it, the clobetasol has softened and flattened some of my nodules and I will soon be getting more injections of Kennelog and possibly vera- pamil, and we'll post the results.
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03/29/2003 23:32
Sean
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03/29/2003 23:32
Sean
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Richard
Richard, What are you talking about? Why the hostile attitude? 1) What is this Gary/Sean stuff? 2) Give me an example of "diatribes without basis". 3) I am not representing anyone except my own experience and the imformation I have read. I have DC in both hands and Ledderhose in both arches. I am certainly not representing anyone in your condition. I feel sorry for you. Obviously it is extremely stressful for you. 4) What arguements? There is an attempt to degrade any comment I make by Jan, TOm or Jerry (and now MaryBeth and Richard) who are either the same person or related because they come out of the woodwork at the same time to support each other. Obviously it must make them feel good so that is fine. Hope it makes you feel better also. 5) Where did you decide that I was "obsessive in opposing anything other than traditional surgery"? I considered NA before having my surgery, but the disease was too far along. I also considered the colleganase treatments but live too far from Stoneybrook or Stanford. I also considered doing nothing. So I had surgery on an 85 degree contraction and was pleasantly surprised that it went so well and the finger and hand is now in perfect condition until recurrence, if it should come. 6) Why are you and MaryBeth "naive"?
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03/29/2003 23:34
Mary Beth and Richardnot registered
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03/29/2003 23:34
Mary Beth and Richardnot registered
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Ledderhose in foot
Kenny, After reading your posting on having a pea sized lump removed from your foot, and now it is "golf ball sized" I recently read, on a Ledderhose site that "...when only the fibroma is removed, failure to remove the plantar aponeur- osis when a modular mass is present may invite recurrences." I can only say that a surgery where plantar aponeurosis is not removed sounds like a partial surgery, however how would any one of us know if the plantar aponeurosis had been re- moved or not? After all you not I are surgeons and when tissue, etc. is removed, how are we to know what is or what isn't? Mary Beth & Richard
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03/29/2003 23:14
Tom Mnot registered
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03/29/2003 23:14
Tom Mnot registered
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injections
Richard:
Would you please provide additional information about the injections you have had, and others you may be contemplating. What was your condition prior to the injections? Did you have nodules, or was it more advanced? Additional details about the circumstances as well as the outcome would be appreciated.
Tom M
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03/29/2003 23:45
Richard
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03/29/2003 23:45
Richard
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Gary/Sean
Gary/Sean, Gary/Sean, to answer your questions. "Why the hostile attitude?" Because I really just don't like you! (But you call everyone hostile anyway!) Next question, "What is this Gary/Sean stuff? You seem to be the same "gentleman" that posted as Gary for a year. You asked for an example of diatribes attributed to Gary/Sean. I can only say, every thing you have posted, read your own words! You say that Jerry, Jan, Tom, Mary Beth and I do not like you and maybe it makes us feel better. You are right. Sean you act as if every DC surgery has a happy ending. BULL, there are many that result in problematic circumstances such as nerve and vessel damage, scar tissue problems,etc. Kiss off! Richard
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04/01/2003 23:21
Mary Beth & Richardnot registered
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04/01/2003 23:21
Mary Beth & Richardnot registered
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tom m/injections
Tom M, Richard has had one injection of Kenalog approx. 1 month ago, he has noticed softening and flattening in the one nodule that was injected. This injection was performed by a dermatologist. She had put his history and pictures out on a dermatology site. Kenalog was the recommendation that she gave as well as several others as it would not hurt. Other recommedations from dermo's were, Intralesional verapamil for keloids, (which he has from past surgeries), and interferons IL (maybe Kenalog also) for keloids, another recommended Bleomycin for keloids and hypertrohic scars. It seems that some of the recommendations for him were in direct correlation to scar tissue. If you have not had prior surgeries, as he has, these may not be as applicable to you, and you may want to just look into Kenalog and verapamil. His scar tissue is as severe as his DC. Every- one is at a different stage, I guess. He was also given a prescription for temovate gel (generic name-clobestal ointment which we have seen references to frequently) for a topical ointment/gel solution. It seems to have helped as well. We are pursuing these options for softening and flattening, hopefully to reduce pressure from nodules and scar tissue on nerves and vessels. He has now been turned down by two out of country physicians who perform NA due to his scar tissue. If we can resolve the issues of pain management and release of contracture, through a less in- vasive surgery than traditional fasciectomy (of which he has had four) then we feel we have prevailed, as much as is possible. Best of luck to you, Mary Beth and Richard
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04/04/2003 23:07
Rob
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04/04/2003 23:07
Rob
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Dupuytren
On the 13th of March I had surgery done on the ring finger of the right hand by a Hand Surgeon.After removing the cast(splint) which was in place for 10 days , I was informed that in a week I would be able to play golf and PT would not be necessary!I have massaged the hand with Vit E oil and everything has healed beautifully, I can make a fist,touching the palm writh the 4 fingers!However I do not sleep at night because of the pain, the hand is stiff ,sore & swollen.I would appreciate any suggestions as regards specific exercises. I am missing my golf and my age is 66 !!. Thanks
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