| Personal experience |
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12/07/2011 15:30
IanHawkridge 
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12/07/2011 15:30
IanHawkridge
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Re: Personal experience
I was intending to wait a while longer before entering another post, but having had the time to tour this site a bit, I have realised the pain and anguish that some people are going through (fortunately, I have never experienced either - my case was not that severe). For me, the improvement from taking the Reishi mushroom extract continues daily - last week I manged to lay my left hand, face down, flat on the table, for the first time in years; today (albeit with some pressure applied), I have managed the same with my right hand.
So far, I have used about sixty capsules (I bought three hundred for sixty pounds). It would be great if someone else tried it, to corroborate or contradict my experience. In the meantime, I`ll let you know how I progress.
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12/12/2011 02:06
moondanc 
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12/12/2011 02:06
moondanc
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Re: Personal experience
vanceSF:
11 months ago I had the Xiaflex treatment on my left small finger. As you can see from the attached before/after pic, at two weeks out it was looking really good.
Unfortunately, the contracture came back 5 months later. Now, I'm starting to get some pain in the palm and will be going back to the doctor next week.
I knew that it was a new proceedure and there was a good chance of recurrance. In my case it came back with a vengence.
Vance
I had the exact same experience with Xiaflex (2007 FDA trials) except I had it on my ring finger RH. Less than a year later the DD was back with a vengeance not only in that finger but it also started in the finger next to it (in addition to starting up on my left hand!)-- my pinkie finger-- which contracted to stage 4, more than 135 degrees. I've since had two NA treatments on my ring finger and one on my pinkie just recently and thanks to Dr. Charles Eaton nearly both are straight.
I would love to hear one year or more progress reports from others who have had Xiaflex to see how long-lasting their results have been. I'm still convinced Xiaflex either stimulates DD or makes a "dead" zone where it is injected so that the DD gets worse in surrounding areas. I go back once a year to the trial study hospital for a followup and so far I've met three people who have had the same experience I had after Xiaflex-- their disease got worse and started progressing much faster.
Moondanc
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12/12/2011 17:37
flojo
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12/12/2011 17:37
flojo
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Re: Personal experience
Has anyone who had Xiaflex wear a night splint? It seems to be making a difference in my hand after my 2nd NA.
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12/12/2011 19:24
moondanc
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12/12/2011 19:24
moondanc
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Re: Personal experience
flojo:
Has anyone who had Xiaflex wear a night splint? It seems to be making a difference in my hand after my 2nd NA.
Splints were part of the FDA trials for Xiaflex and I wore one for three to four months-- didn't seem to help. Dr. Eaton decided I should wear a splint after my NA in September--but only on my right hand (I had NA on two fingers of each hand) but I couldn't find anyone to make the kind of splint he RX'd and so I have one similar to the one I had in the trials only this time instead of just for my ring finger it's for both my ring finger and pinkie which had a PIP contraction much worse than the ring finger--in fact I've read that PIP contractions are the hardest to treat. I also know in the FDA trials that PIP contractions were much less successful in terms of straightening than other joints.
In another thread (which I can't find right now) I saw a picture of a splint posted which had the straps going over the palm and apparently the hard part on the outside. This is totally different from any splint I've ever seen. Mine -- both of them-- have a custom molded hard piece of plastic that goes on my palm and affected fingers and the velcro straps go over the back of my hand with one of the straps going over the PIP joint, one near the top and the other at the bottom to stabilize it. I'm supposed to wear it for six months.
I'm curious as to what the splints you and other folks wear are like.
Moondanc
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12/12/2011 22:30
BRIANB 
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12/12/2011 22:30
BRIANB
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Re: Personal experience
The spints that I have worn for years.." with much success" as previously posted seem to be similar to yours.
My splints were made from a script by Dr. Eaton, I went to a Cert. Hand Theropist,who took time and made them correctly.
A cure or a vacine for this disease,sure would be nice
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12/12/2011 22:45
flojo
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12/12/2011 22:45
flojo
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Re: Personal experience
Moondance,
My splint is much like the one you described. This type is essential for me because my contracture is at least 90% in my palm. It cups and tightness goes across the palm from thumb to little finger, but now also from somewhere in my palm to my middle finger. It was designed by a local prothetic and orthotic office called Ace Orthopedics. I thought he did a creative job with the design. I went back in to have it adjusted twice. They were great. I will get a picture of my splint and post it.
Brian,
I'm with you 100%. Things are helping but we need the gene therapy or something to deal with this stuff. My DD is determined to get ahead of me, but I am more determined. Not gonna let it win out!
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12/12/2011 23:18
moondanc
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12/12/2011 23:18
moondanc
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Re: Personal experience
Here's a PDF of the finger split RX'd by Dr. Eaton's office-- an Otoform finger splint with thermoplastic backing. I called a half dozen PT offices and couldn't find any that had heard of "otoform" and since time is of the essence after NA, I opted to go for a "conventional" splint-- it is about the size of the one illistrated although a little longer with a strap at the bottom to keep it stable.
http://handcenter.org/dupchapter/ElastomerSplint.pdf
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12/12/2011 23:34
flojo
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12/12/2011 23:34
flojo
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Re: Personal experience
Moondanc,
Interesting. Mine is very different.
For my hand, the one one I have makes a lot of sense. Like everyone, my DD is unique - mostly in the palm. A finger splint would not help me at all. It seems like mine would work for everybody as it is designed to splint the whole hand and all fingers. You never know when it is going to start tightening up and this works to keep the whole hand stretching out. I'll be interested in seeing what others think about how it might or might not work for them.
Might need some help in figuring out how to post the pics. Need to get the pics first though.
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12/12/2011 23:41
BRIANB
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12/12/2011 23:41
BRIANB
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Re: Personal experience
kind of like mine..same idea...support the palm also...as I feel that allows the hand to rest....
I also wear very light breathable cloves under the splint.....feels more comfortable that way ex. perspiration and keeps the spint clean...
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12/13/2011 08:59
wach  Administrator
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12/13/2011 08:59
wach Administrator
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Re: Personal experience
I am currently wearing the splint that is shown at the bottom of http://www.dupuytren-online.info/dupuytr...techniques.html. It's comfortable to wear as night splint but during the day it would be more convenient if it supported only my little and my ring finger. I guess I will just cut out the support for the middle finger and turn it into a 2 finger splint. Right now I am wearing the splint also during the day on and off because my xiaflexed pinkie PIP joint tends to start bending again. I am gradually reducing the daytime wearing because joints ought to be flexed.
Generaly I would think that any specifically recommended period for wearing a splint after NA or enzyme injection is probably just a recommendation, not more. The best advice might be to put on the splint for a while whenever you feel the contracture is returning. A German member of our Society has been doing that for the last 5 years (after NA) and his finger is still straight.
Wolfgang
moondanc:
...
I'm curious as to what the splints you and other folks wear are like.
Moondanc
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