had great experience with xiaflex procedure so far |
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09/07/2013 20:49
carmdi01
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09/07/2013 20:49
carmdi01
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had great experience with xiaflex procedure so far
Had xiaflex injection on Tuesday. Was not that painful. Doc gave me pain reliever with codiene. Had manipulation on Wednesday. Doc numbed the hand. Two clicks and it was over. No pain only immediate swelling. Kept hand elevated and in splint. Tried to ice the hand also. Did take the pain reliever to sleep at night. No pain on Thursday only bad bruising. Friday went grocery shopping with hand in splint. Saturday used hand to shower, wash dishes, etc. No problem. Hand still badly bruised. Swelling seems to be going down. Would advise buying a Elasto-gel hand wrap for cold therapy to use off and on till swelling goes down. If I have my other hand treated, I will be prepared and have a cold hand wrap waiting for me when I get home or possibly tell the doc to have one for me next time. He did not address the swelling part which I felt he should have done. See him in 3 weeks. Till then I am to wear the splint to help straighten out my little finger. The splint is the worse part of it all. Over all, I am very happy with the outcome.
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09/08/2013 22:42
davidw
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09/08/2013 22:42
davidw
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Re: had great experience with xiaflex procedure so far
That's good to hear and yr additional comments noted. please do update us as very interesting to hear how it goes. I have Dupuytrens, one in each hand, at 90 degrees and frankly not sure wot treatment to get. Xiaflex does sound the best.. but its costly in the UK. And I was told £1300 per injection and probably would need two or three per hand and it may recur in 18 months or so.. not to mention it flaring up in other locations..so all in all a tough decision as don't want open hand surgery as it sounds OTT (over the top!). Any suggestions anyone? I hope the Xiaflex is a success for you. Wot happens if you don't do anything? Long term? davidw
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09/08/2013 23:06
callie
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09/08/2013 23:06
callie
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Re: had great experience with xiaflex procedure so far
DavidW,
There can be drawbacks to any procedure. I had surgery (90 degrees little finger) and had excellent results. Not everyone does. I would have surgery again. I had very little pain from the whole experience. But, it is a personal decision.
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09/09/2013 06:10
wach Administrator
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09/09/2013 06:10
wach Administrator
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Re: had great experience with xiaflex procedure so far
David,
have you considered PNF http://www.dupuytren-online.info/needle_aponeurotomy.html as alternative? It works similar to Xiaflex but cuts the cord with a needle instead of an enzyme. In the UK PNF is endorsed by the NHS http://www.nice.org.uk/guidance/index.js...rue&o=11116. You can find a list of clinics on http://www.dupuytren-online.info/NA_list_UK.html.
Wolfgang
davidw: That's good to hear and yr additional comments noted. please do update us as very interesting to hear how it goes. I have Dupuytrens, one in each hand, at 90 degrees and frankly not sure wot treatment to get. Xiaflex does sound the best.. but its costly in the UK. And I was told £1300 per injection and probably would need two or three per hand and it may recur in 18 months or so.. not to mention it flaring up in other locations..so all in all a tough decision as don't want open hand surgery as it sounds OTT (over the top!). Any suggestions anyone? I hope the Xiaflex is a success for you. Wot happens if you don't do anything? Long term? davidw
Edited 09/09/13 09:11
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09/09/2013 11:50
davidw
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09/09/2013 11:50
davidw
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Re: had great experience with xiaflex procedure so far
Thank you Callie and Wach for yr answers and suggestions. I will investigate further, especially NA in the UK. After reading this forum and various others, it does seem to come down to getting a good hand surgeon who has experience in Dupuytrens. The referral i got from my local GP to a surgeon proved unsatisfactory, as I really didn't want the surgeon to operate on my hands or anything else.. thanks very much! Also, it does seem incredible that GPs are so ignorant on Dupuytrens for such a common complaint.. Xiaflex and NA do seem like the next realistic method. However both seem that a reoccurance may well develop in 18 months or so. the xiaflex seemed expensive for that. With NA, the risk is not getting it quite right or damaging other parts of the hand. So, what if I do nothing? What happens to the fingers?! Presume they will continue tightening and contracting? My left hand finger is at 90 degrees. Seems to have got there and stopped. Doesn't hurt and frankly is very livable. My right hand little finger has developed quite fast over the last few years and has quite large nodules and cords. And can hurt after physical work.. In fact, this is how i see my dupuytrens developed. i built my own stone house and cut every cotswold stone and tile over five years. the nodules started in my left hand and gradually contracted. ie I think due to stress on the hands. The two fingers, one in each hand, are now both at 90 degrees. And as i said , livable. But wot will happen in ten years time? The same or much worse? I am 55 yrs old. I hear on this forum, wrong surgeon/Doctor, and one can get multiple problems and in fact have a friend with Dupuytrens who had apparently top hand surgeon operate , several times, and his hands are in a sorry state, with multiple nodules now appearing, in feet and also in other personal areas..which is a worry! So, to operate or not, that is the question? Or do nothing? Any advice please.
davidw
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09/09/2013 14:18
callie
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09/09/2013 14:18
callie
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Re: had great experience with xiaflex procedure so far
Davidw,
You asked, "So, what if I do nothing? What happens to the fingers?"
I can remember my surgeon saying that if I let my finger contract much more than 90 degrees he might have to do the surgery in two different operations because of the difficulty getting to the area. 12 years now after surgery my finger is the same (zero contraction) as before I had Dupuytren's. Your first option would be NA if you don't elect to have surgery. For sure, find a HAND surgeon with experience with Dupuytren's.
The problem to watch is that your hand/finger does not continue to contract. The fingers can contract right into the palm and that brings amputation into the picture. But, it is a personal choice what to do. Some (perhaps many) people live with Dupuytren's and do nothing.
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09/09/2013 16:09
spanishbuddha Administrator
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09/09/2013 16:09
spanishbuddha Administrator
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Re: had great experience with xiaflex procedure so far
Just be aware that fingers left for a long time in a contracture, may develop irreversible joint, ligament, tendon and nerve changes, so that an operation to remove Dupuytren's tissue and straighten them, may not lead to a functioning finger. This is not specific to Dupuytren's and applies to other areas and joints, but fingers are perhaps more of a surgical challenge.
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09/09/2013 16:58
callie
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09/09/2013 16:58
callie
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Re: had great experience with xiaflex procedure so far
I think you are correct. The longer the finger remains in contracture the more the surrounding tissue adapts to the contracture setting. I could be why my surgery was so successful, my contracture of over 90 degrees occurred in less than 18 months.
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09/09/2013 22:47
potter
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09/09/2013 22:47
potter
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Re: had great experience with xiaflex procedure so far
Hi All, Am I correct in believing that xiapex is good only for cords - not nodules?? Cheers, potter
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09/10/2013 06:21
spanishbuddha Administrator
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09/10/2013 06:21
spanishbuddha Administrator
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Re: had great experience with xiaflex procedure so far
Xiapex is approved for use of cleaving cords allowing physicians to straighten contracture. There have been reports of it being used off-label for nodules. I'm not sure of the benefits of this.
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