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09/08/2015 16:28
spanishbuddha  Administrator
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09/08/2015 16:28
spanishbuddha Administrator
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Re: Newly diagnosed
Skippy:
Regarding your recently diagnosed with DC ..I was diagnosed a month ago.I'm 58 and had what I thought were calluses or such in my right n left hand for about 3 yrs..2 years ago i damaged my r/hand pinkie in a crush accident..healed well but finger has became contracted.over last 2 yrs....I was diagnosed with Dc one month ago.....right hand is worst..affecting pinkie ring and middle fingers..just starting to affect pointer...left hand same fingers..but no contracture yet..Pain often in fingers of both hands especially when grasping or lifting (ive been a builder stone mason most of my life) I cant hold nail guns ..drills etc anymore without bad pain in fingers.bad enough..to.force me to stop using tools..n Im no wimp...lol...so it is painful..I live in NSW Aust..n there is only 1 Orthopaedic hand specialist here..in the small town I live in...n he doesnt believe in any alternative treatment..ONLY surgery...I have researched DC and am interested in the use of Xiaflex injections...Ive joined D.A.R.T.on Facebook.(.advocates for radiotherapy) and I am researching n talking to anyone who has had surgery ........I just joined this site and it is a Godsend to see such a collection of fellow sufferers and helpful comments and advice.....Please be patient with me as I am new to the Computer world and only have a mobile phone to use to get on the web....I will post some pics here soon and update as more happens...Are there many Aussies on here ? ....regards Skip
Welcome to the forum Skip
There are a few Aussie folks participating here, so hang on and they'll be along. In the meantime the search option works pretty well.
Best wishes SB
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09/08/2015 22:37
Cherise 
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09/08/2015 22:37
Cherise
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Re: Newly diagnosed
Skippy:
Regarding your recently diagnosed with DC ..I was diagnosed a month ago.I'm 58 and had what I thought were calluses or such in my right n left hand for about 3 yrs..2 years ago i damaged my r/hand pinkie in a crush accident..healed well but finger has became contracted.over last 2 yrs....I was diagnosed with Dc one month ago.....right hand is worst..affecting pinkie ring and middle fingers..just starting to affect pointer...left hand same fingers..but no contracture yet..Pain often in fingers of both hands especially when grasping or lifting (ive been a builder stone mason most of my life) I cant hold nail guns ..drills etc anymore without bad pain in fingers.bad enough..to.force me to stop using tools..n Im no wimp...lol...so it is painful..I live in NSW Aust..n there is only 1 Orthopaedic hand specialist here..in the small town I live in...n he doesnt believe in any alternative treatment..ONLY surgery...I have researched DC and am interested in the use of Xiaflex injections...Ive joined D.A.R.T.on Facebook.(.advocates for radiotherapy) and I am researching n talking to anyone who has had surgery ........I just joined this site and it is a Godsend to see such a collection of fellow sufferers and helpful comments and advice.....Please be patient with me as I am new to the Computer world and only have a mobile phone to use to get on the web....I will post some pics here soon and update as more happens...Are there many Aussies on here ? ....regards Skip
Hello, sorry to hear about the accident causing the DC diagnosis. I think that you will find many including myself do not recommend surgery as a first option. My experience with surgery was the worst. it had caused all my fingers to flair where I only had a slight curve in my pinky before surgery. Surgeons want to do surgery. Surgery is a proceedure that can activate the disease and effect the whole hand. I found that out the hard way.
After the surgeon saw the damage to my whole hand after a few months from surgery, he said well that sometimes happens with DD and just spinned around on his heels a left the exam room. Left me with no other options or referrals period.
I then tried the splinting yet my pinky was in a fully closed position and no way to open it straight as well as the other fingers are tightening and curling from the surgery.
I tried NA.with a specialist on DD. It didn't help so my only alternative was Xiaflex injections. As RT was not a option on the cords to straighten out my pinky. My other fingers are still at a 20' curvature, we decided to let the DC calm down before attempting any treatment other than thrapy after Xiaflex.
I knew all the side effects going in and the cost was covered by insurance. The hand DD specialist was a doc in the study before Xiaflex was approved in the U.S. I had the injections and my hand swelled up to my arm pit up into the lymph nodes for two weeks. Then it slowly began to tapper off & the brusing calmed down. After two weeks the surgeon opened my finger & straightened it out. It was a bit painful but over in a flash. The skin split in a few areas after straightening the finger and healed in a few weeks.The Xiaflex injections also eliminated the heavy scar tissue left behind from surgery. You can't even tell I had surgey at all. The collagen in DC is activated from disturbing the facia fibrous tissue during surgery and scaring is quite another collagen build up issue. The Xiaflex is made from a special protein, a enzyme that eliminates collagen that attacks the facia tissue causing the fingers contract.
I will mention that before NA and the Xiaflex injections the doc used a freeze spray to minimize any pain , worked very well in my case and he was still able to do the injections without hitting a nerve. My hand is better and have gained back most of the strength. The injection Xiaflex was done last March 2015. Now 6 months later I can wear gloves and hold on to light things better even lift a gallon of Milk,clip my flowers from the garden. The grip has not been as tight than before the surgery.This was due I think because the knuckle was at a 180' position for 2 years before I found Xiaflex thru research on the Internet. Then also this FORUM.
I really wish I knew about this forum before surgery. I trusted the hand surgeon's judgement as I knew nothing at the time about DC.I would not have had surgery and found a dr experienced with DC.
I now wear a Fixxglove splint nightly as at rest the fingers naturally contact onto a fist. With DC it's important to protect the hand and fingers. Will wear the splint the rest of my life. Also during the day due to the damage to my knuckle after 2 years in a fist position my doc preferred that I wear a spring splint during the day when typing doing things that will curl the fingers. They are very comfortable. There are pics of many different splints for different stages of DC on this Forum.
Thats my experience with DD My right hand.
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09/09/2015 00:36
Dep 
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09/09/2015 00:36
Dep
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Re: Newly diagnosed
Skippy:
Regarding your recently diagnosed with DC ..I was diagnosed a month ago.I'm 58 and had what I thought were calluses or such in my right n left hand for about 3 yrs..2 years ago i damaged my r/hand pinkie in a crush accident..healed well but finger has became contracted.over last 2 yrs....I was diagnosed with Dc one month ago.....right hand is worst..affecting pinkie ring and middle fingers..just starting to affect pointer...left hand same fingers..but no contracture yet..Pain often in fingers of both hands especially when grasping or lifting (ive been a builder stone mason most of my life) I cant hold nail guns ..drills etc anymore without bad pain in fingers.bad enough..to.force me to stop using tools..n Im no wimp...lol...so it is painful..I live in NSW Aust..n there is only 1 Orthopaedic hand specialist here..in the small town I live in...n he doesnt believe in any alternative treatment..ONLY surgery...I have researched DC and am interested in the use of Xiaflex injections...Ive joined D.A.R.T.on Facebook.(.advocates for radiotherapy) and I am researching n talking to anyone who has had surgery ........I just joined this site and it is a Godsend to see such a collection of fellow sufferers and helpful comments and advice.....Please be patient with me as I am new to the Computer world and only have a mobile phone to use to get on the web....I will post some pics here soon and update as more happens...Are there many Aussies on here ? ....regards Skip
Type in 'doctors NA Australia' in this site's search engine for a list. Some doctors are more experienced than others. Dr Hunter Smith in Mornington Victoria said he's treated over 600 cases. It took over 4 months before I could have my appointment. He did consultation and NA in same appt because I travelled from interstate. I'd advise you to use a public library computer if you haven't got one and read the very detailed and helpful info on the Dupuytren Society home page ASAP. It will answer many off your questions present and future. Learn what you can before committing to any treatment. Remember your case is different to everyone else's.
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09/09/2015 01:10
dpjcrfsh
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09/09/2015 01:10
dpjcrfsh
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Re: Newly diagnosed
The only doctor in Texas that does radiation therapy is in Austin.
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09/12/2015 00:37
Rocky
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09/12/2015 00:37
Rocky
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Re: Newly diagnosed
Because of the nodules on my left hand, I was uncomfortable holding the steering wheel. However, I found a pair of fingerless gloves on Amazon that have a padded palm and they work perfectly!! They would actually fit even if you have some contracture. I forget how much they were but I think under $20.
I'm also going to research here for a makeshift splint to wear at night. Right now my fingers are straight as an arrow but I'm willing to try anything that will stave off contracture.
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09/12/2015 05:08
Cherise
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09/12/2015 05:08
Cherise
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Re: Newly diagnosed
Rocky:
Because of the nodules on my left hand, I was uncomfortable holding the steering wheel. However, I found a pair of fingerless gloves on Amazon that have a padded palm and they work perfectly!! They would actually fit even if you have some contracture. I forget how much they were but I think under $20.
I'm also going to research here for a makeshift splint to wear at night. Right now my fingers are straight as an arrow but I'm willing to try anything that will stave off contracture.
Yes Rocky I totally get it. I have different gloves for differtend tasks. Even use sports finger protectors / covers used by basketball players, vollyball, golf, etc to protect my fingers. Available at any sports center & probably Amazon... They have everything.
I agree it's important to do anything that can protect our hands .
Kind Regards
Cherise
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