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Hi, I'm new here
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08/12/2010 19:41
f7sharp 
08/12/2010 19:41
f7sharp 
Hi, I'm new here

Just an introductory post. I am new to the forum, but not new to this disease. I was first diagnosed in 2001. I have a contracture on my left hand - little finger only. In my case, I know exactly what caused this. It was a trauma to the hand due to overly zealous use of a screwdriver when assembling some furniture in early 1999. The very next day I noticed a small callous like lump in my hand where the screwdriver butt was digging. The lump never went away and gradually over the next few years grew into a cord which pulled in my little finger.

At the time, the hand surgeons wanted to charge an arm and a leg to do their thing with no guarantee about the effectiveness of the procedure. I was having none of that, so I went online and learned about the things being done in France. I had NA in Paris by Dr. Badois in November of 2004. This was successful pretty much as most people describe their experiences. But, it's six years later and it has gradually grown back to the point where I need to address it once again. So I am researching alternatives. I may opt to go back and repeat with Dr. Badois. But there seem to be many more Doctors in the US doing this now (I live in Seattle). And the new Xiaflex alternative seems to be taking hold as everybody and their brother is now authorized to perform this procedure.

Anyway, I would like to hear experiences with Xiaflex. I know it's early. I've read all the stuff on the web site so no need to repeat that. But if people who haven't shared their experiences would do so, I would appreciate it.

Also, has anyone tried combining Xiaflex/NA to break the cord, with RT to stop the progression? I don't recall seeing any information about this. RT seems to be limited to early stage only.

I want to avoid surgery because I am a guitar payer and don't want to risk losing a finger. I've already given up Piano because of this disease. I'd hate to lose my ability to play guitar.

Anyway, hello and thanks for listening.

And thanks for the great web site.

08/13/2010 05:52
wach 

Administrator

08/13/2010 05:52
wach 

Administrator

Re: Hi, I'm new here

Welcome to our forum! You will find a lot of experience and a lot of information. The menu on the left side might also provide some insight.

NA combined with radiotherapy is currently being tried by several doctors in the US. No results published yet but it probably will, maybe already this year. It takes time because it needs of follow-up. But expectations are not extrmely optimistic because radiotherapy works best on nodules or freshly growing cords which have a high percentage of myofibroblasts. There had been some discussion in this forum as well (you can use the search feature on the top menu).

Combining NA with Xiaflex probably wouldn't be that useful. Both treatmtents aim at breaking a cord. NA mechanically and Xiaflex enzymatically. Once the cord is broken with one treatment you wouldn't need the other anymore.

Wolfgang

08/13/2010 13:29
dave t

not registered

08/13/2010 13:29
dave t

not registered

Re: Hi, I'm new here

Hi,

I posted my good experience with xiaflex on the listserv in June. You can find it a bit further down the listserv. i go back for second xiaflex treatment next month. Will probably have 3-4 treatments total. Prior to xiaflex I had NA which was successful...for 9 months and then DC recurrance.

08/13/2010 17:42
f7sharp 
08/13/2010 17:42
f7sharp 
Re: Hi, I'm new here

@dave t:
Hi,

I posted my good experience with xiaflex on the listserv in June. You can find it a bit further down the listserv. i go back for second xiaflex treatment next month. Will probably have 3-4 treatments total. Prior to xiaflex I had NA which was successful...for 9 months and then DC recurrance.


Thanks Dave. I saw your posts. Looking forward to your followup experience.

08/13/2010 17:45
f7sharp 
08/13/2010 17:45
f7sharp 
Re: Hi, I'm new here

wach:
Welcome to our forum! You will find a lot of experience and a lot of information. The menu on the left side might also provide some insight.

NA combined with radiotherapy is currently being tried by several doctors in the US. No results published yet but it probably will, maybe already this year. It takes time because it needs of follow-up. But expectations are not extrmely optimistic because radiotherapy works best on nodules or freshly growing cords which have a high percentage of myofibroblasts. There had been some discussion in this forum as well (you can use the search feature on the top menu).

Combining NA with Xiaflex probably wouldn't be that useful. Both treatmtents aim at breaking a cord. NA mechanically and Xiaflex enzymatically. Once the cord is broken with one treatment you wouldn't need the other anymore.

Wolfgang

Thanks Wolfgang. I didn't mean to imply combine NA with Xiaflex, but rather one or the other in combination with RT. I understand that Xiaflex and NA accomplish (or at least attempt to accomplish) the same thing.

08/26/2010 02:43
jds 
08/26/2010 02:43
jds 
Re: Hi, I'm new here

I'm also new to the forum. My right hand developed the contracture about 30 years ago. Went to a hand surgeon to see what to do and he showed me in graphic detail how he was going to open my hand up and cut up lots of stuff. He recommended waiting until the contracture was significant to do the surgery.

I decided no one was ever going to do that to my hand so I started a regemin of hyperflexing my fingers on that hand past straight. I did that 2 to three times a day for over 20 years and, although the contracture is still significant, I retain full use of the little and ring fingers on that hand. BTW this is one of the recommended procedures at the Mayo Clinic.

http://www.mayoclinic.com/health/dupuytr...racture/DS00732

About 5 years ago, the contracture started in my left hand and has progressed much faster than the right hand. Still do the exercises and so far am not having any loss of motion in the fingers in either hand.

I don't think that this type of exercise can do any harm. Limit yourself to the amount of flex that is not too painful. Over time you should be able to get the fingers about 1" over extended if you look at your hand from the side and imaging the palm flat on a table and the fingers pulled up.

I may have had the good fortune of starting when the disease was just starting and been able to keep ahead of it.

I hope you do well.

08/26/2010 12:41
David26

not registered

08/26/2010 12:41
David26

not registered

Re: Hi, I'm new here

jds, glad the stretching works well for you. Your DD is apparently very mild with slow growth over 30 years.

Dr. Eaton and others have suggested that some forms of stretching should be avoided. Read here.
http://dupuytrenfoundation.blogspot.com/...blasts-and.html

Strange disease. Confusing options. Some advances are being made but it looks like good solutions are a long ways off.

08/26/2010 15:48
LubaM. 
08/26/2010 15:48
LubaM. 
Re: Hi, I'm new here

David26:
jds, glad the stretching works well for you. Your DD is apparently very mild with slow growth over 30 years.

Dr. Eaton and others have suggested that some forms of stretching should be avoided. Read here.
http://dupuytrenfoundation.blogspot.com/...blasts-and.html

Strange disease. Confusing options. Some advances are being made but it looks like good solutions are a long ways off.
Indeed...very weird disease...so different from one individual to the next one....I've had NA twice on same finger, six years apart. It was done by the top doctors...Dr. Eaton and Dr. Denkler....both times on PIP and DIP joints of small finger...first time PIP at 45 degrees, next time at 90 degrees...both times contractures started to return after six months...

Yet, others on this forum have reported good results for NA lasting 8 years (on same joint at 90 degrees contracture).... no explanation as to why so different... I myself have the "other" hand with nothing but nodules that didn't progress to cords or contractures for over 10 years...had RT on that hand 10 months ago...good results so far !! WEIRD !!

08/26/2010 16:09
TomVirginia 
08/26/2010 16:09
TomVirginia 
Re: Hi, I'm new here

I first noticed dimples in my left hand perhaps 10 years ago. The disease progressed very slowly then showed up in the right hand about 5 years ago. The small finger on the left hand is the only one that ever contracted and for about 5 years I waited for Collagenase to be approved. Throwing in the towel on that idea I had radiation in both hands 11 months ago. Right hand was in the early stages and the progression, although hard to determine, seems to have been halted.
Small finger on the left hand is another story however. it was in the 50 degree range at the start of treatments and the progression seemed to be stunted for 5 months. It kicked back in in this past spring and I started looking for other options when I could no longer stick my hand into the pocket of my pants. I met with a Xiaflex approved surgeon and was warned that patients with the same involvement in their pinky fingers were the ones that experienced a few ruptured tendons during treatment. The incidence is small but I didn't want risk it. I also have a high deductible and the stuff is $$$$$. My surgeon suggested 2 and possibly 3 injections would be needed and at 3K a pop etc etc I was going to be dropping some cash. The required hand brace was an added expense and I knew it was going to be an extreme annoyance at night.

While this was going on I ran into an acquaintance who also had Dupuytren's very severely in two fingers of his right hand. With the help of this site he learned of N.A, treatments and had the procedure done in the spring of this year in Florida. We met in the early summer and showed me his astounding results.
My choice was becoming clear and when I walked into the doctor's office last week my finger was bent about 90 degrees.
During the thorough consultation I asked about the possibility of a ruptured tendon and was given a simple explanation that the needle and Xiaflex do essentially the same thing different ways and for me to think of the cord either being weakened mechanically with a miniature scalpel or chemically/biologically with Xiaflex. Sort of like the difference of using Drano or a mechanical snake on a clogged drain. Drano is hard to control when it's let out of the bottle while you can control the depth of penetration with a snake.
The doctor who performed N.A. procedure needs no mention in these forums. He maintains a Hall of Fame section on his website and you can judge my results by looking for the date 08-17-10.
Had I know it would be so simple I would have had it done years ago. I'm still grateful for having R.T. in my right hand however. The N.A. procedure itself was the pain equivalent of a couple of bee stings. Keeping my hand elevated and occasionally iced caused me to have hardly any discomfort in the days following. Nine days after there are some pressure sensitive areas but no general discomfort at all. My finger still has about a 5-10 degree bend which I believe will improve over time. The most annoying issue has been the slow to heal fissure where my skin slit open during the release. It's a fair trade.
Keep researching your options and the answer will come. Good luck, make a contribution to this most helpful website if you can afford it.
Tom

08/26/2010 17:37
David26

not registered

08/26/2010 17:37
David26

not registered

Re: Hi, I'm new here

Tom, viewed your pics. Good results. PIP contracture of the pinkie. Similar to mine but I also have a lot of cords and nodules deveoping in both palms. Do you know if you had a nodule in or around the PIP joint?

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