Teenager With Dupuytren's...Help? |
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10/05/2008 04:51
allhailthesporks
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10/05/2008 04:51
allhailthesporks
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Re: Teenager With Dupuytren's...Help?
It would be really nice not to have surgery again... I hope not. The cord is very defined, and it's been looking worse every time I go for PT, oddly. Is that because I just had surgery? My range of motion was very good for a while and still is, but the progress seems to be reversing a bit now, or at a standstill, at least. The wound is all healed up, though. That's good.
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10/05/2008 06:55
Wolfgangnot registered
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10/05/2008 06:55
Wolfgangnot registered
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after sugery
The healing after a surgery seems to push Dupuytren's (even in areas remote to the surgery), at least it did so in my case and others report similar experience. It will get better after you hand healed. Are you wearing a night splint? Once your hand has sufficiently healed it might make sense to wear one, there is a chance that the splint slows down further contracture. It doesn't seem to work for each and everyone but at least worth a try.
To jimh: why don't you have NA? It's basically the same procedure as Xiaflex but using a needle instead of the enzyme and it is available.
Wolfgang
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10/05/2008 23:45
jimh
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10/05/2008 23:45
jimh
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Re: Teenager With Dupuytren's...Help?
Wofgang, I may have NA at some point. My thumb has a large radiating contracture at the base, however it's only pulled in the thumb by about 20 degrees - maybe not enough to be snapped after NA. There is also a contracture upwards on the thumb at the PIP joint, pulling down the tip of the thumb; but NA isn't very effective on PIP joints. NA is not available here in Minneapolis so it would require an expensive trip to Florida, California or elsewhere; I am thinkin Xiaflex will be more widely available in a year, and more effective against these sorts of contractures.
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10/06/2008 01:28
Megan Lydennot registered
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10/06/2008 01:28
Megan Lydennot registered
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Re: Teenager With Dupuytren's...Help?
J Ann,
Hi....You've probably written about what you do nutritionally before, so I hope you don't mind my asking you a little more about your diet. I'm experimenting to see if anything has an effect. What sources of protein do you eat (do you eat poultry and/or fish?). What about sugar? (I'm trying to eat no sugar). Are you taking any supplements like NAC?
Any nutritional/supplemental advice is appreciated.
- Megan -
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10/06/2008 03:24
allhailthesporks
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10/06/2008 03:24
allhailthesporks
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Re: Teenager With Dupuytren's...Help?
I haven't been using a night splint. The only thing my PT's been doing is stretching and massaging, and recently he started using some kind of electric, heated massager with ultrasound gel. Due to my mother's busy schedule, it's been difficult to get to my appointments lately. I haven't seen my surgeon in going on three weeks, and I only saw my PT once last week. My thumb has enough range that I can live with it now, but I don't want it to get any worse. Can a cord go away by itself? No, right?
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10/06/2008 22:40
JAnnRunner
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10/06/2008 22:40
JAnnRunner
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Re: Teenager With Dupuytren's...Help?
First response to Jess because this is very important: DO NOT MISS ANY THERAPHY APPOINTMENTS!! With DC it is kind of a one chance shot to get it right the first time, with DC you scare worse than others and massage and probably that cold laser they are using on your hands is fighting the scar and breaking it up so it does not build around your cord or more important your joint. If your mom can not take you find someone that can, how far from your house in the theraphy clinic?? they might be able to direct you to another hand theraphist.. call your doctor about your cord as well I also had a raised cord during theraphy and it did go down later and I can not even see it anymore..but do not take a chance.. DC in the fingers is hard to treat.
Megan and Jess, about my diet I really am no expert just do what works for me and I take no supplements to speak of just : E , calcium, and multi vitamin. I eat some meat: fish, eggs, a little chicken but no red meat. I eat nuts and soybean products also because I eat no dairy.. lots of vegs and some fruit ( to me fruit is too sweet) I try to stay away from sugars, white foods, and sweets as well. In time your body will adjust to your new healthy eating and you will not crave junk food and sweets anymore.. it is not a diet think of it as fueling you body... I hope this helps
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10/06/2008 23:30
allhailthesporks
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10/06/2008 23:30
allhailthesporks
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Re: Teenager With Dupuytren's...Help?
Unfortunately, the closest PT clinic covered by our insurance is pretty far. I try to get there, but sometimes missing an appointment is unavoidable. I don't have my liscence, yet, nor do I have anyone else to take me. I know it's important... I'll keep all you said in mind. Thanks.
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10/07/2008 00:58
JAnnRunner
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10/07/2008 00:58
JAnnRunner
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Re: Teenager With Dupuytren's...Help?
Jess,
you can call your PT and they can give you exercise at home, most of what they due you can work on at home. Please give them a call if they are reputable clinic they will help you out all they can by giving you more at home instructions. Keep your chin up there is an end in sight!!
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10/08/2008 00:12
jimh
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10/08/2008 00:12
jimh
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Re: Teenager With Dupuytren's...Help?
Yeah don't worry too much about missing a PT appointment. The main thing is to do the exercises they give you. A lot of what they do at PT is 'evaluation' to see if you're doing the exercises and if they're having the desired effect. It seems like many patients are slackers and need constant reinforcement or they won't do what they're supposed to. But it's obvious you're highly self-motivated. It's all going to look a lot better in a couple of months.
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