| New dupuytren patient in Oregon. Please help! |
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02/12/2015 15:58
Rider 
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02/12/2015 15:58
Rider
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New dupuytren patient in Oregon. Please help!
Hi,
Please read my brief story and give any advice. Thanks so much!
I am a 39 year old male living in Oregon. I broke my ulna near the wrist in Septmeber of 2013 which required surgery with plates and screws. Rehab went smooth. I do some bike racing and started riding in the spring of 2014. By the end of the spring I developed a small nodule mid-palm of my ring finger left hand, looking like a large callus. By early summer the nodule was increasing in size and becoming sore. By the end of summer the nodule was larger and sore while riding about a 2/10 pain. I made some adjustments to my gloves and grips which helped but still sore. I saw a local orthopedic surgeon early Fall 2014 and he quickly diagnosed Dupuytrens. My entire family is from Sweden but my parents do not recall anyone in our family having the disease. He informed me there was nothing to do until a contracture occurs and it could remain dormant for many years. So I went about life as usual kind of ignoring it. I started doing P90X DVD home workouts about 5 weeks ago and the nodules have definitely increased in size. Now there are 3 distinct nodules joined together which can be a little sore when doing pull ups. This increase in size has got me worried so I started looking online for answers and came across this site. Based on some posts from other people in Oregon I made an appointment with Dr Kline in Portland for early April. He is not a surgeon but has training in NA. I may make an appointment with Dr Cha, a radiation oncologist, who apparently is competent in the RT procedure. From reading posts it sounds like I may be a candidate for RT. I may be making this up in my head but it seems like there is a very mild sensation in the palm at rest. No contracture.
Please send any advice for me in making treatment decisions. Thanks so much!
Andy
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02/12/2015 18:45
spanishbuddha  Administrator
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02/12/2015 18:45
spanishbuddha Administrator
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Re: New dupuytren patient in Oregon. Please help!
Hi Andy
From your description it sounds like it's active right now, and so you are a good candidate for RT. Find someone who knows about the 'German protocol' and consider that. It is worth still talking to an experienced hand surgeon, experienced with NA and Xiaflex as well as surgery, although none of those treatments are appropriate right now for you.
I have nodules both hands and would never do pull ups, if you mean chin ups to a bar above head height. That's just too much strain on the hands IMHO. That's just IMHO, and only that. I do do DIY, gardening, modest weights, cycle and play tennis but in all cases protect my hands, so you can carry on with most things.
Best wishes
SB
Summary leaflet here http://dupuytrens-society.org.uk/treatme...mentLeaflet.pdf
Edited 02/12/15 20:49
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02/12/2015 19:58
econn 
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02/12/2015 19:58
econn
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Re: New dupuytren patient in Oregon. Please help!
I can't offer much advice regarding RT but if you are looking for a dr. who can offer a second opinion, I would highly recommend Dr Keith Neaman in Salem. He is a plastic surgeon specializing in hands and is proficient in all hand surgeries including, fasciectomy, reconstruction, NA and Xiaflex. I don't know if he can advise on RT at this point. He did my Xiaflex procedure last year and I am extremely pleased.
http://www.healthgrades.com/physician/dr-keith-neaman-x3h9b
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02/13/2015 16:31
Tami1962
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02/13/2015 16:31
Tami1962
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Re: New dupuytren patient in Oregon. Please help!
Hi Andy, I live in Oregon! I have had issues for 20 plus years. Have had N/A with Dr. Kline (it grew back) and saw Dr. Cha $1200 for a first time visit. Dr. Kline was going to do a double N/A (both hands) a few years back and then I was to have radiation by Dr. Cha. All at non-covered insurance expense. Then I started TCM (Traditional Chinese Medicine). TCM is not popular on this site. But the treatment released the contracture, reduced the nodules and I didn't have to have surgery. I highly recommend Rachel Gillman, LAc at Acupuncture NW 503-493-9389. It is by Legacy Emanuel hospital. I play about 10 hours of tennis a week without gloves and life is good. The tingling in your hand means the process is active and growing. Good luck with treatment and let me know if I can help you further. Tami
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02/14/2015 00:11
Rider
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02/14/2015 00:11
Rider
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Re: New dupuytren patient in Oregon. Please help!
Thanks so much for the responses. I will definitely look into the Chinese med. I have an appointment with Dr Cha's partner Dr Seung. Does anyone have experience with Dr Seung at Providence Oregon Clinic?
Also I will skip the pull ups!
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02/20/2015 02:38
callie 
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02/20/2015 02:38
callie
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Re: New dupuytren patient in Oregon. Please help!
Hello Andy, I had radiation from Dr. Cha two years ago. At first I thought the radiation worked, but it definitely hasn't two years out. By about 15 months the nodules/cord have greatly developed and contraction has increased to about 15-20 degrees from 0-1. Irradiation sometimes works.
On my other hand, I had nodules similarly as you describe and they went dormant on their own for over 15 years without doing any procedure. You just never know for sure with Dupuytren's. I am convinced that above normal use of the hands can invigorate Dupuytren's if a person is predisposed.
Edited 02/20/15 04:42
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02/24/2015 03:30
Sherise
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02/24/2015 03:30
Sherise
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Re: New dupuytren patient in Oregon. Please help!
Rider:
Hi,
Please read my brief story and give any advice. Thanks so much!
I am a 39 year old male living in Oregon. I broke my ulna near the wrist in Septmeber of 2013 which required surgery with plates and screws. Rehab went smooth. I do some bike racing and started riding in the spring of 2014. By the end of the spring I developed a small nodule mid-palm of my ring finger left hand, looking like a large callus. By early summer the nodule was increasing in size and becoming sore. By the end of summer the nodule was larger and sore while riding about a 2/10 pain. I made some adjustments to my gloves and grips which helped but still sore. I saw a local orthopedic surgeon early Fall 2014 and he quickly diagnosed Dupuytrens. My entire family is from Sweden but my parents do not recall anyone in our family having the disease. He informed me there was nothing to do until a contracture occurs and it could remain dormant for many years. So I went about life as usual kind of ignoring it. I started doing P90X DVD home workouts about 5 weeks ago and the nodules have definitely increased in size. Now there are 3 distinct nodules joined together which can be a little sore when doing pull ups. This increase in size has got me worried so I started looking online for answers and came across this site. Based on some posts from other people in Oregon I made an appointment with Dr Kline in Portland for early April. He is not a surgeon but has training in NA. I may make an appointment with Dr Cha, a radiation oncologist, who apparently is competent in the RT procedure. From reading posts it sounds like I may be a candidate for RT. I may be making this up in my head but it seems like there is a very mild sensation in the palm at rest. No contracture.
Please send any advice for me in making treatment decisions. Thanks so much!
Andy
Hello Andy,
First I would like to add how sorry I am to hear you have DC. It is a tough issue to deal with and very hard to find a qualified doctor.
Surgery I learned after the fact that it was the wrong treatment for DC. I had one finger bent & frozen after surgery all four fingers flared and cannot place my hand flat palm down on a table.
Live and learn as some would say. The surgeon said he could straighten the pinky with no other warnings or side effects were mentioned. After the surgery, the surgeon said he did all he could and sometimes a flare caused by surgery can make DC worse. That was all he had to offer & that was the last visit. No recommendations as to do what's next leaving me with my dormant hand fingers curled & misshapen .
It took me months of research to finally find the doc I did. He was also involved in the clinical studies for 4 years on XIAFLEX. It's a enzyme made from soil to break the thickened collagen which slowly causes the fingers to curl.
I am in Oregon. I went to a hand surgeon for DC on my pinky the first time.The whole idea was to prevent all my fingers from curling up. The surgery was a bad idea was never warned that all my fingers could flare curled & frozen. Right hand my dominant hand. The surgery was a disaster . Later I learned of needle appronectomy. A needled is used once the hand is numbed to breakup the thicken nodules in my hand that cause my fingers to curl. The needle is used for nodules only. XIAFLEX For thicken cords visible only. It's a learning experience.
For the cords that show in the palm from the wrist thru the fingers a enzyme biologic drug was used to breakup the think collagen that causes the fingers to curl. My first injection with XIAFLEX was done today in the thick cord and scar tissue from the surgery . It's my only option to open my pinky that had totally closed. The other fingers are misshapen due to the many nodules. Needle appronectomy has helped open the 4th finger. It was a good start , 3 more fingers to go with nodules. Takes several treatments . My dr. is a plastic hand reconstructive surgeon & retiring next month in the Portland area. He has had years of experience treating DC, and will finish up the XIAFLEX bio drug pinky finger.
Therapy and hand/finger manipulation and hand/finger splints are made to keep the fingers straightened. Wearing the splints at night. It takes time & I will need to wear splints and strengthen that hand for a year. THANKX to the first surgeon.
DC can come back. There is no guarantee . Most with DC are of Northern European decent. My great grandparents came to the US from Northern Ireland. I am the only one who has this disease in the current generation. My kids are too young to tell if DC effects them yet. It's heredity. I also have severe arthritis in my hands.
There is a lot of info online for further details for both needle appronectomy and XIAFLEX .
If you would like the name of the doctor taking my retired doctors place after my current doctors retirement. PM for name and location.
Kind Regards 
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