| Lost password
93 users onlineYou are not loggend in.  Login
Anyone else try this and is it bad?
 1 2
 1 2
11/26/2011 13:00
Emdoller 
11/26/2011 13:00
Emdoller 
Anyone else try this and is it bad?

Hi

New to this forum but not new to the disease. I've been trying to figure out if I should get treatment and which one. Right now it's two fingers and not too bad but I know it's getting worse.

Anyway after reading about xiaflex and watching the videos I figured if try bending back my fingers myself to see if I can snap the cords. On my ring finger I couldn't do it but on my middle finger I was able to do it. It hurt like hell but I actually heard and felt it snap or rip. It wasn't pleasant but it did increase my range of motion.

Anyone else do this or have an opinion on it?

Thanks - Ed

11/26/2011 14:07
wach 

Administrator

11/26/2011 14:07
wach 

Administrator

Re: Anyone else try this and is it bad?

I have hread stories where that happened accidentially, so it feasible. I am not sure I would do or recommend it. How can you be sure you don't snap anything else?

Now if your finger is fully straight again you might try wearing a night splint for a while to avoid that your finger reconnects the split parts of the cord. that you result in quick recurrence of the contracture.

Wolfgang

11/26/2011 14:18
Emdoller 
11/26/2011 14:18
Emdoller 
Re: Anyone else try this and is it bad?

Thanks for the reply. It's not back to normal but it's better. I'm not a dr but my thinking was that it wouldn't hurt anything else as this is what they do after xiaflex. Additionally I thought that it wouldn't hurt anything else as my finger should be straight.

Anyway, that's what I thought and why I did it. Trust me when I say it hurt.

So far it looks bruised and only hurts if I touch it.

Ed

11/26/2011 15:14
callie 
11/26/2011 15:14
callie 
Re: Anyone else try this and is it bad?

Keep in touch with this forum to let us know what happens in the future. I would be very hesitant about your procedure in that it could easily stimulate the Dupuytren's activity. Dupuytren's seems to react to stress and accentuate the growth if not removed.

11/26/2011 16:23
Emdoller 
11/26/2011 16:23
Emdoller 
Re: Anyone else try this and is it bad?

Thanks will do. I'm just frustrated as I'm sure anyone with this is. Regarding stress bringing it on that's exactly what happened to me as I broke both my wrists in a skateboarding accident about 10 years ago and that was the start of it.

Started with knuckle pads and then my left hand. Interestingly enough the knuckle pads have pretty much gone away.

Lastly, and the key reason I don't want to go with surgery, is I had it on my feet when I was in college and was never diagnosed properly and went through several surgeries to remove the lumps. So my feet are pretty scared up and painful. If I would have known what it was I never would have had the surgery.

Thank goodness there is now the Internet and forums like this.

Ed

12/04/2011 17:41
bstenman 
12/04/2011 17:41
bstenman 
Re: Anyone else try this and is it bad?

With the Xiaflex treatment the tissue is dissolved and then a day or a week later the physician does the same thing you did to break the bond and release the finger. You just saved yourself a month and $4000.

There is good evidence that X-ray treatment can slow the development of Dupuytren's if done in the early stages. It is probably too late for you to consider having this done.

Dr. Keith Denkler who has a great deal of experience treating people with Dupuytren's believes that stretching of the hands is beneficial and cites the relative lack of contracture when it affects the feet as people continue to walk and stretch out the connective tissue.

I know of no research that shows a statistically significant correlation between repetitive stress and Dupuytren's. It first became a problem with me in my 50's and other people are more advanced by the time they reach 30. This seems to indicate that the progression of the disease has little to do with activity. Active people may be more aware of the disease as it impacts them more than someone who is less active or has a different occupation or personal interests.

I don't know if my Dupuyten's gene came from my mother's side of the family or my father's as going back two generations on both sides no one suffered from this defect and I had uncles and grandparents on both sides that lived well into their 80's. My brother was a carpenter for 25 years and his hands were subject to a lot more daily stress than mine but I developed Dupuytren's and so far he has not.

My hands now become fatigued and will cramp when doing activities which require tightly grasping something for a period of time. Previously it was the opposite and I could do things with less fatigue and more hand strength than anyone else I have known over the years and this included body builders who spent many hours free lifting weights. I suspect that the same mechanisms that were positive attributes when I was young are now involved with the lumps, contractures, fatigue, and cramping that I get now.

12/04/2011 20:53
Emdoller 
12/04/2011 20:53
Emdoller 
Re: Anyone else try this and is it bad?

Thank you for the response. I work out with weights a 3-4 times a week and believe that it helps but who knows. What's interesting is I don't seem to have a well defined cord right where the beginning of my ring finger starts and believe this is due to my weight lifting. If I ever want to go have NA performed I'd worry they may not be able to do it.

I live on northern CA so plan on going to Dr Denkler if it gets worse.

Thanks again for your response.

Ed

12/04/2011 23:31
hammer 
12/04/2011 23:31
hammer 
Re: Anyone else try this and is it bad?

Emdoller:
Thank you for the response. I work out with weights a 3-4 times a week and believe that it helps but who knows. What's interesting is I don't seem to have a well defined cord right where the beginning of my ring finger starts and believe this is due to my weight lifting. If I ever want to go have NA performed I'd worry they may not be able to do it.

I live on northern CA so plan on going to Dr Denkler if it gets worse.

Thanks again for your response.

Ed
I had a needle release that didnt work,but weakened the cord enough to break it myself later that night.I am in a multiple cord study right now for xiaflex.I had 2 vials in my right hand 2 weeks ago and went from 70 degrees to 15 drgrees.Its slick stuff Im gettin the left hand done in 3 weeks.Doc Frazier in Oklahoma is the man.He has done 140 xiaflex treatments.This is his 4th clinic on it.I have had 5 surgeries and needle releases.Left pinky is fused.Doc was glad to find me"scar tissue"and I was glad to find him.I will keep ya posted.Nice to find u folks.Dave

12/05/2011 04:31
wach 

Administrator

12/05/2011 04:31
wach 

Administrator

Re: Anyone else try this and is it bad?

Hi Bruce,

there is some literature on "Dupuytren's and occupation" on

http://www.dupuytren-online.info/dupuytr...ure_trauma.html

There probably is a correlation but likely not a very strong one, though it sure depends on the occupation. Other factors, like genetics, might have a stronger influence. Still unclear is why, on an average, men develop Dupuytren's earlier. Maybe occupation? Mikkelsen reports that the disease percentage reduces after pension.

Wolfgang

bstenman:
...
I know of no research that shows a statistically significant correlation between repetitive stress and Dupuytren's. It first became a problem with me in my 50's and other people are more advanced by the time they reach 30. This seems to indicate that the progression of the disease has little to do with activity. Active people may be more aware of the disease as it impacts them more than someone who is less active or has a different occupation or personal interests.

...

12/05/2011 04:42
flojo 
12/05/2011 04:42
flojo 
Re: Anyone else try this and is it bad?

Emdollar,

You may want to email Dr. Denkler with pictures and he will email you back. Feel free to describe your disease. He'll also weigh in on whether he thinks you are a good candidate for Xiaflex if you are interested. He'll talk with you by phone if you need him to.

He does NA, the enzyme, and surgery if necessary. He has treated many hands with all treatments including well over 100 vials of Xiaflex by now.

He is passionate about treating Dupuytren's hands and gives plenty of time to answer all of your questions and makes you feel like he wants to do that for you.

 1 2
 1 2
contracture   dupuytren-online   treatments   grandparents   occupation   contractures   correlation   xiaflex   significant   interesting   accidentially   disease   progression   skateboarding   statistically   Interestingly   successful   experience   Additionally   Dupuytren