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07/26/2013 22:18
callie 
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07/26/2013 22:18
callie
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Re: Personal experience
I was given exercises by a hand therapist which were mostly stretching and flexing. I did flexing of my hand and finger throughout the day. I never put painful pressure on my flexing. I kept my hand/scar tissue moist 24/7 with Aveeno hand lotion. I would force a fist by using a flexible self adhesive bandage (1 1/2" wide, cut in ten inch lengths) to make a rubber-band like situation that I would put around my fist for about ten minutes three times a day. This really seemed to help. My surgeon agreed that if a person did the flexing and exercising on their own it would not be necessary to go to a hand therapist.
My little finger was over 90 degrees contracture before surgery. It is still absolutely perfect 11 years later. There is no sign that I ever had Dupuytren's or surgery except for a faint scar that can barely be seen even with close examination.
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07/26/2013 22:33
Brian_PDX 
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07/26/2013 22:33
Brian_PDX
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Re: Personal experience
BrianP:
I agree and understand what you are saying. We all are seeking justification or rationale for what is completely a mystery. At times I blamed the surgeon for not giving me Xiaflex three years ago when I asked about it. The reality is the people I have encountered in the medical field, right or wrong, all did what they thought was best for me. Perhaps the sin is not being more informed of rapidly changing technology.
Brian
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07/26/2013 22:44
Trigger8 
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07/26/2013 22:44
Trigger8
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Re: Personal experience
Callie I thank you so much for your Post it is making me feel more confident of my impending surgery. I found it interesting that my hand specialist surgeon is very particular about when he will operate. He only operates when the finger is at a certain amount of bend. I have two fingers bending but one hasn't bent enough.
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07/26/2013 23:09
moondanc
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07/26/2013 23:09
moondanc
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Re: Personal experience
callie:
I think the splinting was important in my situation, but I am aware that there is a study floating around that says there is no advantage to splinting. The most important procedures following surgery are flexibility exercises. I did my own therapy and it worked very well.
Also, I had RT which so far seems successful. Zero side effects.
Callie--do you have any more information on the study saying no advantage to splinting? I have mixed experiences with regard to splinting.
Also, I had RT two years ago on both hands-- all fingers (but not thumbs) --I asked them to do the entire palm, the MCP and PIP joints and halfway to the DIP joints (in other words the DIP joint and tips of fingers did NOT get RT). I have slight dryness but not that much different than the dry skin I had before. I haven't noticed thinning skin --probably because I have thin skin on the rest of my body.
When I did the research on RT on another possible side effect-- cancer of the hand--as I recall there was a less than 1% chance and it would be 15 or 20 years down the road. It was a chance I was willing to take.
Diane
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07/26/2013 23:20
moondanc
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07/26/2013 23:20
moondanc
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Re: Personal experience
brianprice:
In addition to the PCP joint bending back to 45, I have nodules in the underside of the PCP joint, and severe reverse bend in between the last two joints of that pinkie finger. None of those were there before the Xiaflex.....
I've bolded your remarks for emphasis. Do you draw any conclusion from this? I know-- it's impossible without clinical studies to "prove" Xiaflex intervention is any worse than NA. But after my first NA--DD didn't spread to my second hand.
After Xiaflex, not only did the disease spread to my second hand (and I know too many other folks who have had that experience) I also have cords on the sides of my fingers, my MCP joints are now affected and I now have nodules between my PIP and MCP joints which I never had -- prior to Xiaflex there was only ONE PIP joint involved.
Best to you and all of us who have aggressive Dupuytren's,
Diane
Edited 07/27/13 02:21
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07/26/2013 23:38
moondanc
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07/26/2013 23:38
moondanc
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Re: Personal experience
Brian_PDX:
Callie,
Would you describe your rehab flexibility exercises in more detail please? Something we could follow and use ourselves? Thank you.
Brian
Callie did a great job of describing her regimen. I've rehabbed with and without a hand therapist involved. One thing I think really helped me with flexibility AND to prevent as much scar tissue as possible was using finger putty or "therapy putty" which can even be purchased at REI in the US or most any PT office or online-
http://www.rehaboutlet.com/therapy_putty.htm
I kept the putty in the freezer so it didn't get soft too soon once I started using it and used it 5-10 minutes, 2 or 3 times a day. I'd basically just play with it-- move it from hand to hand or just use it in one hand constantly squeezing it and moving my fingers. I used green (medium) and blue (firm). In fact, I think I'll go see if I can find it now and start using it just for flixibility.
My hand therapist also had me wear a compression band on my finger between the MCP and PIP joint to prevent swelling-- I'm not sure made much difference. She also had me do contrast baths--alternate my hands in hot water for 5 minutes and then ice cold water for 5 minutes, repeat 3 times. Again, didn't see much difference from when I didn't use this technique. Finally, she did some hand massage (felt good but...) and used ultrasound--again, couldn't see much difference.
Diane
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07/27/2013 01:44
callie
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07/27/2013 01:44
callie
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Re: Personal experience
This is from this website under treat for surgery.
"Finally, we would like to note that the positive effect of wearing a night splint, though it is generally recommended, has not yet been proven by strict scientific standards, see C. Jerosch-Herold et al "Night-time splinting after fasciectomy or dermo-fasciectomy for Dupuytren's contracture: a pragmatic, multi-centre, randomised controlled trial" BMC Musculoskeletal Disorders 2011, 12:136 abstract. The authors find no evidence for the effectiveness of splinting after surgery. They themselves indicate that results might differ for splinting after NA."
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07/27/2013 05:31
brianprice
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07/27/2013 05:31
brianprice
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Re: Personal experience
BrianPDX - this link has various methods for resizing JPGs. How you do it will depend on the particular OS you have and whether you have third party software like Photoshop, iPhoto etc. Anyway this will get you started....hope that helps.
http://www.wikihow.com/Resize-a-JPEG
BrianP
Brian_PDX:
Surgeons do believe "if you can cut it you can cure it" but this new doctor has some different philosophies than the others I have worked with. For example, no splinting. Just extend the fingers via physical therapy. Seems his specialty combination of plastic surgery and hand surgery is a good combination. Radiation is scary, right? Talk about side effects.
I will keep you folks informed of my progress but, having done this before, this surgery already seems to be more positive than the others.
Take care and good luck to all,
Brian
PS: The pictures seem too big a files to upload to this site, any ideas on that?
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07/29/2013 16:18
marigail
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07/29/2013 16:18
marigail
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Re: Personal experience
I have been following all you are saying regarding splinting. I've virtually been in a splint (or two) since last November, and I continue to hold my own against this disease. I've also been exercising, so I guess I'm getting the best of both worlds. I see my doctor next week and I am hoping to be able to at least have a few nights with no splints...sleep has been severely compromised!!!
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07/29/2013 16:57
wach  Administrator
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07/29/2013 16:57
wach Administrator
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Re: Personal experience
Hi Marigail,
why don't you ask your doctor for a more comfortable splint? I have been wearing a splint myself for about 12 months and never had any sleeping problems because my splints were both very comfortable. Currently I am wearing the splint only once a month for about 5-7 days. No idea whether that's optimal but at least it doesn't bother me. When you are exercising you don't pull on your finger or cord, do you?
Wolfgang
marigail:
I have been following all you are saying regarding splinting. I've virtually been in a splint (or two) since last November, and I continue to hold my own against this disease. I've also been exercising, so I guess I'm getting the best of both worlds. I see my doctor next week and I am hoping to be able to at least have a few nights with no splints...sleep has been severely compromised!!!
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