| Nodules on fingers |
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09/05/2013 23:51
moondanc 
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09/05/2013 23:51
moondanc
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Re: Nodules on fingers
pia2some:
This is the worst of the PIP joint nodules. It constantly hurts. It pulls the skin so tight it almost feels like the skin will split.
My dream would be that all those cords and nodules could be treated at one time with one treatment. Ha. Fantasy, is more like it. lol
~ dawn
Seeing your pictures just makes me livid. I KNOW it's the Xiaflex. I've got the same kind of stuff. You just sit here and wait for the nodules to explode. I've actually had some success with a nodule between the MCP and PIP joint on my index finger. This is a little gross so tune out if you're squeamish-
-I bite the nodule and massage it with my teeth and it has broken it up. Too bad I can't get that angle on the rest of my fingers!
Diane
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09/05/2013 23:55
moondanc
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09/05/2013 23:55
moondanc
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Re: Nodules on fingers
pia2some:
I do read in bed with my Nook and I can swipe the pages with my thumb, so that is good.
~ dawn
Well, that's all I needed to know--thanks I also read in bed with my tablet so guess I'll become a thumb swiper or perhaps I can figure a way to get a stylus molded into my splints!
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09/05/2013 23:56
pia2some
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09/05/2013 23:56
pia2some
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Re: Nodules on fingers
moondanc:
pia2some:
This is the worst of the PIP joint nodules. It constantly hurts. It pulls the skin so tight it almost feels like the skin will split.
My dream would be that all those cords and nodules could be treated at one time with one treatment. Ha. Fantasy, is more like it. lol
~ dawn
Seeing your pictures just makes me livid. I KNOW it's the Xiaflex. I've got the same kind of stuff. You just sit here and wait for the nodules to explode. I've actually had some success with a nodule between the MCP and PIP joint on my index finger. This is a little gross so tune out if you're squeamish-
-I bite the nodule and massage it with my teeth and it has broken it up. Too bad I can't get that angle on the rest of my fingers!
Diane
Sorry, that mental image made me laugh. But yeah, my nodules and cords are popping up almost daily now. And I had absolutely nothing going on in my left hand at the time of the Xiaflex. Now that palm is so puckered and pulled that I can't even clean my hands well because dirt gets up under the puckered skin. Cords all in that palm and the ringer finger is pulling way in - probably a 30 degree contracture already. I also have nodules forming in the webbing. That all happened within 3 months of Xiaflex.
~ dawn
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09/06/2013 00:02
pia2some
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09/06/2013 00:02
pia2some
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Re: Nodules on fingers
moondanc:
pia2some:
I do read in bed with my Nook and I can swipe the pages with my thumb, so that is good.
~ dawn
Well, that's all I needed to know--thanks I also read in bed with my tablet so guess I'll become a thumb swiper or perhaps I can figure a way to get a stylus molded into my splints!
Is the picture of my splints the same kind you are talking about? At least it's nice that they can be remolded as your hands change. I will sometimes wear one splint during the day if I can. I find that I automatically close my hand into fist most of the time. That is because they are pulling so tight now that it just feels better when my hand is closed. Wearing the splint at least keeps me from closing it. But of course, I can only wear one at a time.
What is really frustrating is that I am a serious yoga student. I do at least one, and sometimes two, classes a day. We've had some interesting times figuring out how to adapt poses that require weight bearing on my hands. But I'm determined to make it work and so far, so good.
Callie, I have an appointment with a new hand specialist on September 16. I've been going to Dr. Kay Kirkpatrick up until now. She was trained in NA by Dr. Eaton is a name in the Dupuytren's world as a knowledgeable doctor. And she is. But it is rather far from home. A closer doctor just did two NA procedures on my mom's hand this summer. Her hands are nowhere as bad as mine, but this doctor seemed very skilled. If I am comfortable with his knowledge and expertise in DC, I may stick with him. It would be soooo much easier to go to his office if I'm having procedures done.
~ dawn
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09/06/2013 01:32
moondanc
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09/06/2013 01:32
moondanc
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Re: Nodules on fingers
pia2some:
Is the picture of my splints the same kind you are talking about? At least it's nice that they can be remolded as your hands change. I will sometimes wear one splint during the day if I can. I find that I automatically close my hand into fist most of the time. That is because they are pulling so tight now that it just feels better when my hand is closed. Wearing the splint at least keeps me from closing it. But of course, I can only wear one at a time.
~ dawn
Mine are like that but since it's been 2.5 years I only have a 2 finger one for one hand. The one's I'm going to get-- I've already talked to and made an appointment with an OT here for the Monday I get back from my NA trip are Otoform and have silicone in them which is supposed to help with the contracture. The OT will adjust the splints as needed. I cannot imagine wearing two at night-- or anytime except if I want to use it as an excuse for my husband to have to do everything :-). Unfortunately, a month after my NA, he has to have serious ankle surgery and will be in a non-weight-bearing cast for 2-3 months so I have to heal very fast to take care of him. It's SO much fun getting older Guess I can't complain, he's got DD on top of that but no contractures yet.
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09/06/2013 06:27
wach  Administrator
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09/06/2013 06:27
wach Administrator
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Re: Nodules on fingers
Yes, I used the Fixxglove for a full year. I didn't feel that it distrubed my sleep and it is easy to put on and off. In the morning, though, my fingers were stiff and it took about 10 minutes until they were in good shape again. I would not use a dynamic splint. It's not comfortable and might aggravate the disease (but that's just speculation),
Wolfgang
moondanc:
I've got six of those nodules, two without contracture yet-- arghhh. Did you splint for the entire year? What kind of splint? I'm going to have--two custom molded splints (I'll probably never sleep again ) for night and probably some small individual dynamic joint splints.
Diane
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09/06/2013 06:33
wach Administrator
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09/06/2013 06:33
wach Administrator
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Re: Nodules on fingers
NA might be an option if you have a very experienced doctor. But it really depends on the individual situation and your doctor has to decide. Surgery is not a very good option for the pinkie because there is not much flesh to cut ... but it's still an option. Maybe a knife fasciotomy where they cut the cord surgically? Or maybe I try a combination of massaging and splinting just to see how it works http://www.ncbi.nlm.nih.gov/pubmed/21965179. I am not suffering very much from the bent finger so I am more into trying whether I find something else.
Wolfgang
pia2some:
Wolfgang,
Are you considering surgery now? I'm assuming NA isn't a good option for the pinky either?
~ dawn
Edited 09/06/13 09:39
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09/06/2013 18:55
moondanc
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09/06/2013 18:55
moondanc
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Re: Nodules on fingers
wach:
Yes, I used the Fixxglove for a full year. I didn't feel that it distrubed my sleep and it is easy to put on and off. In the morning, though, my fingers were stiff and it took about 10 minutes until they were in good shape again. I would not use a dynamic splint. It's not comfortable and might aggravate the disease (but that's just speculation),
Wolfgang
moondanc:
Sorry I'm cross posting with you--we've too many threads going :-). i'm still not sure about the dynamic. I'm sure not going to get the DynaSplint although that's what Dr. Pess recommends. I may try a dynamic splint on my worst PIP-pinkie- knuckle as an experiment.
I'm anxious to try the Otoform to see if the silicone makes any difference.
Do you think it would be possible/dangerous? if one worse two Fixxgloves at night. If you get up, would I have enough motion to hold a glass of water, etc?
Diane
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